Saturday, December 31, 2005 11:59 PM CST And Just After Midnight-Happy New Year
NO APPETITE, SPORADIC VOMITING
Nicholas has not had much of an appetite at all the last couple of weeks. And during the last couple of weeks Nicholas has vomited sporadically; all except one of the times it has been when administering oral medicines.
LESS ENERGY, LOTS OF SMILES
Nicholas’ energy level being rather low has not changed his smiles that freely warm our hearts. Usually, the smiles come from Nicholas joking about something or seeing and/or hearing something funny—he loves caring about others and laughter.
Sometimes it is hard for Nicholas to smile, from just not feeling very well.
This evening brother Chris’ former college housemates, Derek and Minas, came to town and Nicholas joked and played PS2 games with them. Tonight cousins entertained Nicholas during our get together with grandmother Eva (dad’s mom), aunts & uncles (dad’s sisters & their husbands), and cousins. And a telephone call to grandmother Charlotte & grandfather Floyd (mom’s parents) completed our celebration as we rang in the New Year with a pop & a bang—lots of them—as all the kids were “shooting” off New Year confetti.
HAPPY NEW YEAR
And it is a happy New Year: being together, sharing smiles & laughter, growing & learning, praying & listening, hoping & waiting while lovingly wishing and striving for happiness together for ever!
Please click on View Photos and see Nicholas grinning—smiling & beaming with happiness.
December 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, December 30, 2005 11:59 PM CST
DAY HOSPITAL
Remember, there are two medicines administered to treat being CMVpositive and the Cytogam is infused in the Day Hospital to manage any negative reactions. Benadryl and Tylenol are given as pre-treatment against reactions. The time in the Day Hospital began at 3:30 PM with the first set of vital signs taken and then the pre-treatment. The infusion was un-eventful (good) and we left the Day Hospital at 8:00 PM.
PACKED LIKE WE’RE READY FOR A NEWBORN
Although today’s Day Hospital appointment was just that, day appointment only, we had suitcases in the drunk of the car for Nicholas and mom & dad as if we were going away for the weekend. In fact, we keep suitcases packed at home as if we were expecting a newborn and wanting to be ready to leave for the hospital on a moments notice. Why? Because we do not want to be in a position where Nicholas has to be admitted without some of his favorite things (games, toys, books, and things for the room to make it “his room”) and a change of clothes for mom & dad.
NICHOLAS
We have to be strong and wise for Nicholas. We have to pray and listen for Nicholas. We have to do all things possible and just know that EVERYTHING IS POSSIBLE THROUGH GOD. There are several immediate decisions to be made and our trust and belief in God are what is constant in our hearts. He will lead us and deliver Nicholas as He created Nicholas—pure and without imperfection.
Nicholas awoke a lot earlier than normal and happily had a nice start to his day with KJ (sleep-over last night) and had an overall quiet morning and night. He looks great and is always quick thinking and caring about others—he has an amazing memory, keen awareness and interpretation of what he sees and hears, and engaging ways of expressing his thoughts. His energy level is still low and his walking is still far from normal.
It is so hard to hear and see what we do every day. However, we trust, believe, and know Nicholas’ joy will be restored through God. God's voice and omnipotence is our resting place for everything we need—and He has given Nicholas to us (to all of us). Learning from Nicholas is easy and hard at the same time. Easy because Nicholas' love seems to come from a natural "spring" of caring. Hard because we all wish and pray that we could "see" Nicholas' healing NOW. And you know what? Every moment of every day we are blessed with Nicholas' love (and your love to Nicholas) and that is really what matters too. Many of you may have heard the notion something like, "It is not just getting to where you want to be (or the achievement of something), it is how you get there that matters." Well, mom & dad are so proud of Nicholas and how he is gets through it all everyday, and how he lovingly works to achieve everything! And that "spring" where the caring and love originates from is given to Nicholas from God so it has to be everlasting, because He is.
December 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, December 29, 2005 11:36 PM CST
SO MUCH GOING ON
So nice to wake up in our own beds…and to get some rest. However, while Nicholas was still soundly sleeping the morning began early, it was fast paced, and filled with very busy conversations through the afternoon with both LPCH & the UOM as well as with our current insurance company and new one effective January 1. The objective with the insurance companies is “continuity of care” with the transition. The objective with the two hospitals is ensuring collaboration and its focus on uncovering what is best for Nicholas and navigating the transition of insurance companies.
Remember, the consultation with the UOM is based on learning their perspectives on curing Nicholas via a cord blood transplant. Some of our questions are:
1) What is it that UOM has to offer making them think they can cure Nicholas?
2) What will be different to trigger graft-versus leukemia effect (GVL) recognizing that Nicholas had bad graft-versus-host-disease (GVHD) with the April 7 BMT and it apparently did not get the GVL effect to destroy any remaining leukemia?
3) What is the UOM’s proposed conditioning treatment, recognizing the toxicity Nicholas has already been exposed to?
SCARE THIS AFTERNOON
This afternoon, Nicholas had a temperature reading 38.2 Celsius (equates to 101.2 Fahrenheit)—low-grade fever. An hour later using three different thermometers the readings were 37.8, 38.0, and 37.9. Then two and a half hours later his temperature was 37.2—so thankful for the below 38 readings because we certainly were not looking forward to going back into the hospital today. However, we will do whatever is needed to keep Nicholas safe (even if it means back to the hospital).
SLEEP-OVER
Tonight, Nicholas was so glad to have KJ at our home for a sleep-over. Play, talking, fun, dinner, movie, popcorn, hot cocoa… Yet another blessing—new, caring, loving friends. PLEASE CLICK ON View Photos.
DAY HOSPITAL TOMORROW (FRIDAY)
Tomorrow, Nicholas will be in the Day Hospital at LPCH for the continued Cytogam treatment. We expect to be home by 9:30 PM.
December 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, December 28, 2005 11:27 PM CST
…AND NOW WE ARE BACK HOME
Today Nicholas began treatment for the CMV: Gancyclovir and Cytogam. The Gancyclovir is administered via IV twice a day over one hour. The Cytogam is also administered via IV; however, it is infused over about 3 hours and all vital signs are checked the first 15 minutes and then every 30 minutes to manage any negative reactions.
Nicholas looked great all day and has been without fever. It was a rather quiet day in terms of energy and during the infusions of these two medicines it was uneventful medically. SO THE GOOD NEWS AGAIN, Nicholas was discharged from the hospital at 6:20 this evening—we are home again. It was kind of like another homecoming for Christmas, not because of presents, because of the warm, loving, and grateful sense of Love.
NOW WHAT
CMV TREATMENT: The Gancyclovir will be administered via IV by mom. The Cytogam will be administered again, this time in the LPCH Day Hospital this coming Friday; next Tuesday, Wednesday, Friday; and the following Monday, Wednesday, Friday and so on as necessary. The Day Hospital stays can last from 4-6 hours in the hospital.
UNIVERSITY OF MINNESOTA CONSULTATION: The LPCH doctors talked to the UOM today and they will continue to collaborate to determine timing for the consultation based on CMV treatment and other action (like possibly another round of Clofarabine) that is also time sensitive. This is all so heavy on our hearts and minds, and we are reminded of something once again. We are reminded that “…I walk with God along the way and oh it is a joyful, dominion day.” Trying to manage all of what has happened, what is going on, and what needs to be going on cannot be done alone by mom & dad (at least not us). Our prayers and listening sets our course!
Right now the thinking is that we will be going to the UOM sometime late next week. Because of the Cytogam treatment, it will probably be a quick 24-hour trip similar to the plan we had for tonight: leaving San Francisco at 11:00 PM and then leaving Minnesota at 8:00 PM the next day. It’s a good thing we’re used to being sleep deprived. We’ll make it work though.
December 28, 2005 Blood Counts:
WBC: 3.8
HGB: 9.2
PLTs: 66
ANC: 2,050
___________________________
Tuesday, December 27, 2005
***Late Update***
THE ROLLER COASTER HAD A TWIST AND U-TURN TONIGHT
The CT Scan was completed by 6:30 tonight and the initial results were interpreted by 7:30. A good thing. Other than some mild thickening around the sinus (not a concern) the CT Scan was clear. Another good thing is that we were cleared to go home-tonight!
We left LPCH at 8:20 tonight and at 9:10 (when we were 15 minutes from home) we received a telephone call on our cell phone. It was the doctor on call and she had news that meant we had to turn around and go back to LPCH. Hard to believe that this journey has taken these types of twists and it is hard for mom & dad to keep rolling with the tides-although we will!
The news, it was that results from microbiology on blood drawn this morning revealed CMVpositive . This is Cytomegalovirus and can be very serious; the treatment is administering Gancyclovir and Cytogam. (For more information about CMVpositive, please refer to the August 18, 2005 journal when CMVpositive registered back then.)
So the twist is that before we made it home we had to go back, make a U-turn. However, the doctor did agree that we could go home, let Nicholas open up his Christmas gifts, and then return tonight so the intervention can begin.
At 1:00 AM Wednesday morning we arrived back at LPCH, and back into our same room we had left just over 4 hours ago.
UOM CONSULTATION POSTPONED
Because CMV can be serious and requires immediate intervention, the consultation at the UOM has to be postponed. Tomorrow (Wednesday) we will have LPCH and UOM collaborate on timing, recognizing that there are several implications by postponing. However, first things first.
NICHOLAS
Nicholas, naturally, was very upset about having to go back after just getting home. We did not tell him until moments before we were to begin opening Christmas gifts together as a family (with all of our boys except one). We explained the circumstances and although he understood, again, naturally he did not want to go back. He is just 5 years old, and regardless of the age would you want to go back? Thankfully, Nicholas was joyful after letting the painful news soak in and having some time to talk about it.
Nicholas wants to be free from all the clinic visits, the hospital stays, connected to an IV pole, the medicines twice a day, and all the limitations linked with cancer. And yet, as we write this journal, we can do so because we know that the only way to get out from "all this leukemia and bone marrow stuff" is to go through it. Go through it knowing that God is our sheperd and He will lead us! Go through it knowing that purity has no room for error.
OUR OTHER BOYS
We say it is about Nicholas right now, and right now has turned into right now 403 days. We pray that our love and demonstrating love will fill our boys with what they need. And, we just know that as hard as it is on them as well, they are being filled with love that provides understanding and comfort. And it is God that gives them joy and happiness through any situation.
Note: And we thank you, all of you again, for being with us for 403 days. You help us in so many ways, thank you.
PLEASE CLICK ON VIEW PHOTOS FOR NEW PICTURES
New pictures under View Photos are of Nicholas Christmas morning at LPCH, and two pictures from tonight during our brief time home before going right back to LPCH.
***Early Update, 4:00 PM CST ***
NOT GOING HOME TODAY (AWAITING CT SCAN)
The good news is that the cultures have been coming back negative. Although Nicholas has been without fever since late Christmas morning, this morning he had a few fevers. Thankfully, he is now without fever; however, the doctors are having a CT Scan performed to rule out any fungus growing.
Because the CT Scan will not be performed until 6:00 this evening and results will take a couple of hours, we are expected to be in the hospital tonight. As long as the CT Scan does not reveal any fungus or other concerns, we should be discharged tomorrow morning (Wednesday).
STILL PLAN ON GOING TO THE UNIVERSITY OF MINNESOTA (UOM) TOMORROW
We are still cleared to travel to the UOM tomorrow. We have found a "red eye" flight that leaves San Francisco tomorrow night at 11:00 PM. This will get us into Minnesota very early Thursday morning, so we will have time to freshen up before our 9:00 AM consultation Thursday morning.
We are planning to fly back home the same day, leaving Minnesota at 8:00 PM. (Maybe Nicholas will be able to play in the snow for a little bit.)
NICHOLAS
Nicholas, we say what we see & know and that is, Nicholas is making the best of his time in the hospital. Does he want to be here, no. Does he like the people here, yes. Does he want to be home, yes (to be with his brothers). So how is he getting by, truly he is finding ways to just be "playing and having fun." And, understandably it is very hard for Nicholas for many reasons (we are sure you can imagine). And, through God, love gets him and us by!
Right now he is playing interactive/educational computer games with two volunteers from Books-A-Live. And someone recently said on Nicholas' guest book: It can be Christmas all year long. Yes it can and literally it can be-we can all make that a fact through our love and caring. And for Nicholas this year, it will be Christmas in another way as well, remember, he hasn't seen what Santa left for him because we had to leave to the ER Christmas morning. So when we do go home, what a beautiful surprise(s) will be there to greet him.
He looks good!
*Oh, in the first picture under View Photos, dad wasn't scared-dad was looking at the slimey stuff on the bottom of the lagoon near the edges and thankful my "water shoes" were on (you know me)*
December 27, 2005 Blood Counts:
WBC: 3.2
HGB: 8.9
PLTs: 69
ANC: 1,700
___________________________
Monday, December 26, 2005 11:59 PM CST
GOOD DAY
Nicholas' good spirits and playfulness carried into today and throughout the day. To family and friends he talked to on the telephone, he was very expressive about how his Christmas was very good-combination of gifts in his stocking we brought from home and gifts that were in his hospital room when he arrived yesterday at 11:00am made a lasting-postive impression on Nicholas. Nicholas has reminded us that it really is the simple things that come from love that are lasting and important.
MEDICAL STUFF
The blood, urine, and other cultures have been negative (good) so far. So the plan is for remaining cultures to be assessed and if they too are negative, Nicholas should be leaving the hospital sometime tomorrow afternoon.
Further assessment of the chest x-rays are not bearing out anything to be alarmed about--GREAT!
We were wondering about the University of Minnesota consultation we have on Thursday, leaving Wednesday, and what impact this fever ordeal will have on it. The doctors have told us that as long as the cultures do not reveal any bacteria or virus, along with Nicholas no longer requiring oxygen now that is lungs are providig what is needed, we can still travel for the consultation. Okay, now we have to finalize the airline/flight that we have been working on since last week-there are several programs and airlines that provide assistance for these types of medical flights. (Talk about collaboration, the LPCH social worker was in our room today and on the telephone helping to ensure the flight to the University of Minnesota is secured.)
Note: Looking at the blood counts below, you will notice that they have dropped. We are not sure yet, however, the lower counts could be because of a viral infection. (Typically, with a bacterial infection the WBC rises.)
FUN STUFF
Nicholas learned another magic trick from nurse Leslie. He had lots of fun demonstrating the trick tonight. Included here under fun stuff, is Nicholas. His Song of Love is just right..."playing and having fun!" We are thankful for the fun moments and days; it brings so much comfort to see him happy and feeling okay. And we still want it all, for Nicholas to be healed so he can continue to bring so much fun-and love-to others and others to him.
*Oh, and the dolphins felt soft and smooth to Nicholas*
December 26, 2005 Blood Counts:
WBC: 3.1
HGB: 8.8
PLTs: 66
ANC: 1,947
___________________________
Sunday, December 25, 2005 9:15 PM CST
*UPDATE #3 9:15 PM CST*
Nicholas slept just about all day. He is awake now and going through his stocking and opening a couple of gifts we were able to quickly grab and bring with us very early this morning. The nurses had gifts and a stocking with Nicholas' name on them when we arrived into his room at 11:00 this morning. He is happily opening the gifts-however, understandably he wants to be home and has been crying and praying to be home with his brothers. Thankfully, some energy has surfaced and he is playful and expressively interacting with several of the nurses as well as mom and dad right now-thank you Lord!
We pray for the manifestation of Love and Spirit throughout Nicholas' body so that nothing can become of anything except purity and goodness realized.
We hope that we will be able to leave the hospital Tuesday afternoon-thank you for being with us and for your prayers. Your voices can be heard and we are trying to feel the power of your love. And our Father, God we know he loves Nicholas!
Mom was able to get her first sleep from last night around 12:30 this afternoon and slept for about 4 hours. Dad will try to get some rest sometime this evening. And we know that our Father, God will provide for us.
*UPDATE #2 11:30 AM CST*
Nicholas is being admitted into LPCH. His oxygen level was low and there is a subtle haziness on the lungs, right lower lobe from the chest x-ray. It could be pneumonia-viral or bacteria, or it could be a cold developing.
Antibiotics Ceftaz and Vancomycin will be administered shortly here in the ER. These two antibiotics provide broad coverage as an intervention to the cause of the fever until the cultures grow out to pinpoint any virus or bacteria to determine the appropriate antibiotic to fight any sepecific virus or bacteria. At this moment he does not have a fever-appears we caught it quickly.
We will be leaving the ER and going to 2North where he has always stayed here at LPCH.
Again, please PRAY with us for Nicholas' healing, please! We trust and have complete faith in God for His loving hand to comfort and guide Nicholas, as well as mom & dad and the medical staff.
We brought Nicholas' Christmas stocking with us so at least he will be able to go through it this morning. We will have his older brothers bring his Christmas gifts to the hospital this afternoon. We will do everything we can to help make this Christmas okay for Nicholas-it's going to be hard to do this because naturally he wants to be home. We want to be home so bad, just loving and being "home" with Nicholas. This roller coaster, slippery road is so very, very hard to experience. From one day to the next, and even moments within the days, hurt so much seeing Nicholas exerience all of "this."
And, again, we are thankful for the many blessings Nicholas and our family have received-it's still so very hard and it hurts so much.
*UPDATE #1 6:40 AM CST*
NICHOLAS HAS A FEVER, ON OUR WAY TO THE EMERGENCY ROOM AT LPCH
Nicholas now has a fever. We are on our way to LPCH for blood work, blood cultures to assess for any viruses or bacteria, and antibiotics.
If his blood counts are still good and he looks okay to the ER department, we may be able to come home after receiving the antibiotics.
PLEASE, PLEASE PRAY AND BELIEVE THAT NICHOLAS IS OKAY--he is God's perfect child!
___________________________
Sunday, December 25, 2005 5:06 AM CST
***Saturday, December 24, 2005 Journal***
Day 400 (1 year and 35 days) since Nicholas’ original leukemia diagnosis
Day plus260 since the BMT
Day 104 of the relapse and Day 27 since the partial remission
CONCERNED
While Nicholas was taking his morning medicines just after noon, he vomited. Throughout the day he was not feeling very well. However, this afternoon when one of his brothers’ friend (Erin) came to visit and tonight while playing with his cousins (Mikayla, Alex, Dominique, and Stephanie) he showed spurts of energy and we were so happy to see, his joyful playfulness and laughter.
Tonight Nicholas said his lower stomach was sore and very, very late tonight he vomited again. Nicholas’ temperature hovered just below 38 Celsius (which is 101 degrees Fahrenheit) tonight. He said he just doesn’t feel well. Nicholas then asked mom if she would write the note to Santa, and he listed several things to be included, including what he was leaving for Santa and what he was leaving for the reindeer.
We PRAY that Nicholas does not come down with a fever, that his stomach pain goes away, and that he feels better so he can enjoy Christmas—giving thanks to Jesus Christ and God. And feel better so he can just enjoy “playing and having fun.”
In the Name of Jesus, we confess God’s Word concerning healing. As we do this, we believe and say that God’s Word will not return to God void, but will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24. We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in him.
GIVING THANKS AND EXPRESSING LOVE
We asked Nicholas what he wanted to include tonight on this journal. He just asked us to say, “Mele Kalikimaka!” Which as you may remember is Hawaii’s way of saying Merry Christmas.
And mom & dad say: enjoy your families, enjoy what each has to offer, and let love guide your thoughts and actions—happy holiday!
December 24, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, December 23, 2005 11:59 PM CST
LAB WORK AND CHECK UP AT CLINIC TODAY
Referring to the December 15 journal, now that we are back from Hawaii and able to better follow up on any issues, we began tapering down on the Prednisone (steroid). Now just 2.5mg once per day and next week we may stop the Prednisone.
The lab work (blood counts and chemistry) look really good with the WBC, PLTs, and ANC rising into and/or toward the target ranges (see above targets, and counts below or also above). However, the Bilirubin (liver marker) was at 2.5 and has been climbing high out of range (below 1.4) since December 7. Tonight we re-started administering Actigall as an intervention. The other liver markers were okay and next Tuesday more lab work will be performed; if the Bilirubin is still high an ultrasound will be performed to assess the liver function.
Nicholas was very, very playful with the staff at LPCH today—he was “playing and having fun!”
OVERALL ABOUT NICHOLAS
Nicholas is in good spirits—with praise to God—and his walking continues to improve although he has about 50 percent mobility at this time. His energy level is probably about 30 percent. You may remember from recent journals that Nicholas was having a hard time finding his "happiness" and joy; the trip has certainly been very, very helpful toward Nicholas "feeling" happy and joyful. And we know, we really know, that only God can bring him happiness, joy, and complete healing. And, we know that God has brought you in our lives and you have been so amazing with your care and love for Nicholas as well as our whole family—thank you.
What remains amazingly high is Nicholas' caring, loving, and enthusiastic thoughts. We are so thankful for Nicholas' love and his "teaching" every, every day—thankful that through God Nicholas brings all these things closer for understanding and recognition!
GETTING READY FOR NEXT WEEK’S CONSULTATION
On December 28 we are scheduled to fly to the University of Minnesota for a December 29 consultation on a different type of BMT. So we are preparing questions and preparing ourselves for just about everything. And first of all, we are praying for God’s guidance, because His direction will set the right course for Nicholas—we trust and believe.
HAWAII PHOTOS
Photos of the Hawaii trip are now on the third album below, under Links. Because the third album has all of the pictures since the BMT, once you access the album, if you scroll to the end you will see Nicholas “playing and having fun” in Hawaii. You will also see mom & dad, his brothers, and his nanny (Kimmy) joining in the fun—loving Nicholas. Aside from the home page photo above, you can click on View Photos to see a few photos before going to the album.
December 23, 2005 Blood Counts:
WBC: 5.5
HGB: 10.8
PLTs: 88
ANC: 1,540
___________________________
Thursday, December 22, 2005 5:59 PM CST
BACK HOME WITH LOTS OF LOVE AND BLESSINGS TO SHARE
Below is a quick recap of Nicholas’ time in Hawaii: December 15-21. LOTS OF PICTURES will be uploaded tomorrow onto the third album under Links below. They will be at the end of the album so once you click onto the album and access it, you can scroll to the end for many Hawaii pictures enabling you to see and feel Nicholas’ happiness. And PICTURES WITH THE DOLPHIN, HOKU, will be on the home page tomorrow.
Arriving home this morning, it was a beautiful sight—a combination of Disneyland and Disney World culminating into a Winter Wonderland. While we were in Hawaii, neighbors transformed our home into a Winter Wonderland for Nicholas. As we pulled up to the house, the lights that we had put up for Nicholas were complimented by lights, lights, and more lights everywhere. As we walked into the house the Christmas decorations we had put up for Nicholas were complimented by more lights everywhere, more decorations everywhere (including the backyard). The feeling of Christmas was brightly and lovingly felt and still felt because the transformation has truly embedded love deeper into our hearts. WHAT FRIENDS AND NEIGHBORS! We know we are blessed to have you and words alone cannot express the loving impact you have on our lives—as great as the feeling you have embedded into our hearts, the feeling of our love and embracing thanks must be felt in your hearts.
A FEW THINGS WE MISTAKENLY SAID
While in the hotel, a few times we would say things like, “what time should we leave the hospital?” Even Nicholas said, are we taking the "wheelchair,” when he meant to say travel stroller or stroller.
Wednesday, December 21, 2005
So, today, Nicholas’ trip ends and his memories just begin. Before leaving the resort, Nicholas took Gatorades to the Dolphin Quest staff. And he said the “red” one is for the trainer, Julie, because red is her favorite color.
Tuesday, December 20, 2005
Wait until you see Nicholas on a Jet Ski for the first time. What do you think he loved to do on the Jet Ski? Did you guess, accelerate? Yes, with Dad on the back, Nicholas loved pressing the accelerator, the waves flying by, and almost throwing dad off (well, not really almost throwing me off, however, he did startle me a few times). Nicholas said, “I always wanted to go Jet Skiing!
At the beach today, we made a big heart-shape outline with Nicholas in the middle. Tomorrow look for these PICTURES and some silhouettes.
Tonight, with the stars sparkling, soft trade winds, the ocean was warm and so pleasing to be just splashing around, “playing and having fun.”
Monday, December 19, 2005
More with Hoku and others. Today, Nicholas participated in a “Kids Quest For Knowledge” at Dolphin Quest. Nicholas was happy to be up close with Hoku again, and he had fun learning, asking questions, and giving some answers during a 2-hour “hands on experience for kids featuring close encounters with colorful Hawaiian reef fish (and a sting ray), green sea turtles and delightful dolphins through multi-sensory activities, games, and role-playing.” This adventure took Nicholas into the lagoon and onto the beach.
The entire Dolphin Quest staff was truly amazing with their attention and love they showed Nicholas—while maintaining a good experience for all the other kids participating.
Sunday, December 18, 2005
Back on the Ocean, today we took Nicholas snorkeling at Hanauma Bay. Nicholas briefly got into the water; however, he spent lots of time just enjoying the beach, cuddled up with mom. The last time we were in Hawaii, Nicholas was the first one going into the water to snorkel, twice. This time, just being on the beach was a good thing for Nicholas.
Saturday, December 17, 2005
Nicholas has not been shopping since his November 2004 diagnosis, and Waikiki was a fun place for Nicholas to shop and have fun looking at the street performers, cultural events, and of course a buying a few toys like his Hawaiian Ukulele (instrument). And of course, restaurants were all part of Nicholas trip and he really enjoyed eating out (its all coming back to him now). Tonight we ate in a softly-lit cabana on the beachfront at the Cabanas Seaside Grill at our hotel, the Kahala Mandarin Oriental Hawaii. We were under the stars and a gentle evening trade wind.
Nicholas said, “I love this wish because I get to go down and swim with the dolphins, swim with them and feed them.”
Friday, December 16, 2005
DOLPHINS: Nicholas woke up to a very big surprise that he could hear and see from one sliding window facing south to the ocean, and one sliding window facing east. From both views, looking down was a sizeable lagoon leading into other bodies of water. And in the lagoon, there was the big surprise. There they were…dolphins “playing and having fun” in what is called Dolphin Quest. “Dolphin Quest transports you to an extraordinary place where people an dolphins make lifelong connections, an dreams of swimming and playing with these magnificent animals come true.”
Nicholas, and the whole family, had an amazing time with one of the dolphins named Hoku. Imagine this, Hoku means “star.” Nicholas was not only face to face, he was mouth to mouth in a loving kiss. The entire staff at Dolphin Quest was incredible; they treated the entire family to lifelong memories of fun, happiness, and love. PICTURES of the experience will be posted tomorrow on the home page and the third album under Links.
LPCH: This morning, Nicholas had a little nausea, however, he did not vomit. We called and talked with the medical team at LPCH, letting them know about the vomiting and that we did not continue with the tapering of the Prednisone (please see December 15 if necessary). They agreed with our decision to not continue with the tapering. Unless there are any other medical changes experienced, Nicholas will go to LPCH next Friday for a follow up and lab work.
UNIVERSITY OF MINNESOTA: Today, we had more conversation with the University of Minnesota regarding the December 29 consultation (please see December 14 if necessary).
MORE LOVE AND WE ARE SO GRATEFUL: Another beautiful surprise as we returned to our room. There was something from mom & dad’s employer, AAA. There it was, a series of round-blue balloons floating above a package, and above these balloons was a big multi-blue covered dolphin balloon. And in the package was a Hawaiian Collectible bear named Hoku Li’ili’i (HOE-koo LEE –ee LEE-ee). Remember, Hoku means star in the Hawaiian language, and Li’ili”i means little. And we have all seen, that through God, Nicholas is our and your “little star.” Thank you AAA, and all of you who work at AAA for being with us in so many ways throughout this whole journey.
AND ANOTHER BEAUTIFUL SURPRISE, ON THE BEACH
After “playing and having fun” on the beach, Nicholas and dad were relaxing on lounge chairs facing the ocean. And guess what flew and landed right at Nicholas feet on the lounge chair? Remember the song, His Eye Is On The Sparrow, we talked about on December 3? Well, we do not put our faith on symbolism, however, the sparrow landing right at Nicholas’ feet was a beautiful surprise. It came to us that God was saying, remember, I am with you!
Thursday, December 15, 2005
Today, Nicholas was on his way back to Hawaii. In route to the airport this afternoon, Nicholas felt a little nausea and then vomited. He has traveled many, many times so we certainly do not think it was caused by anything related to trip he was taking. He has not vomited in quit a while so it is a little alarming. The only medicine change is that Tuesday the Prednisone was tapered down to 2.5mg once per day versus twice per day. However, yesterday we went back to 2.5mg twice per day because yesterday morning his stomach was a little sore. Nicholas slept about 4 hours of the 5 ½ hour flight to Oahu, Hawaii. There was a little turbulence before safely landing. Tonight, Nicholas again vomited.
December 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, December 14, 2005 11:59 PM CST
Day 390 since Nicholas’ original leukemia diagnosis
Day plus250 since the BMT
Day 94 of the relapse and Day 17 since the partial remission
LOVE FLOWING FROM EVERYWHERE
Friends: from Nicholas’ previous school, mom & dad’s work, and neighbors filled the afternoon and night. We talk a lot about love, and love truly continues to flow from everywhere. We are so thankful and amazed at how all of YOU have stayed with Nicholas and mom & dad on this journey—Nicholas feels it everyday, mom & dad and our other three boys live it everyday, and YOU have been right there with all of us even though the normal daily demands of life could pull you away. Thank you so much!
UNIVERSITY OF MINNESOTA CONSULTATION SCHEDULED
Referring to yesterday’s journal about reaching out to other hospitals for input and perspectives, a consultation has been scheduled for December 29, 2005 with the University of Minnesota’s cord blood transplant center. In advance of our arrival, they will review Nicholas’ records including HLA information and then conduct an initial search for cord blood. No decision has been made to have a stem cell transplant (from cord blood), however, the consultation should provide us with options to consider.
We are thankful for the collaboration of the hospitals and their collective focus on Nicholas and not on their respective offerings. And we turn to God every step of the way to ensure our focus!
MELE KALIKIMAKA
Tomorrow afternoon (Thursday), we will be on our way to Hawaii—thanks to the staff at LPCH and of course the Children’s Wish Foundation. Amazingly again, friends have taken action to further ensure Nicholas has a wonderful time in Hawaii.
This afternoon, Nicholas’ teacher and her class called Nicholas at home and sang to him, wishing him a warm and beautiful time in Hawaii. Nicholas listened fondly and when they finished singing, Nicholas said, “Mele Kalikimaka!” Which is Hawaii’s way of saying Merry Christmas. (Not only can Nicholas speak Spanish, he knows some Hawaiian words and their pronunciations.) Do you know the name of Hawaii’s State fish? Nicholas would say it for you and we think you would love hearing him accurately say “Humu-humu-nuku-nuka-apua’a.”
Mele Kalikimaka, and we will try to update the journal while we are away—loving, playing, and being with Nicholas as he relives playing in his dream playground, Hawaii. (New photos will probably have to be posted when we return.)
…I wish it could be Christmas all year long…and we will continually pray, loving and trusting God forever!
December 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, December 13, 2005 11:59 PM CST
TODAY’S CLINIC APPOINTMENT
While mom & dad do not match for a Kier-mismatch or Haplo bone marrow transplant, understanding that the desired match is one that will trigger a “fight” so to speak to attack any leukemia that may exist, the pain of not matching eases up knowing that our blood is so harmonious with Nicholas’ blood.
If there is no desired match with one of Nicholas’ brothers, we will discuss other options. If you are wondering why we are not talking about performing another traditional BMT with the same donor (remember, it was a match) that enabled the April 7 BMT for Nicholas, a repeat of that type of match is very rare to achieve the benefit Nicholas now needs so it is not a top choice. We are having the doctors explore the possibility of a matched unrelated donor (MUD) meeting the desired criteria that would enable a search through the various national registries. The focus is on a Natural Killer (NK) Cell transplant—these cells look for and destroy non-normal cells like those characterized by virus or tumor such as cancer. Also, a consult with the University of Minnesota is being scheduled to help uncover options. We will consult with St. Jude as necessary to ensure all sides for a solution are evaluated.
The immediate plan is still to have another 5-day course of Clofarabine shortly after returning from Hawaii. And more importantly, our focus remains on God’s direction as we continually, pray, listen, and trust Him. Our prayers continue to be for us to have the ability to make the right decisions, for the doctors’ minds and hands to be guided, and for Nicholas... …for Nicholas to be revealed as God made him, pure and perfect, because God’s creation is pure and perfect always and forever.
We were reminded today, “When God closes a door He opens a window.”
CHRISTMAS PARTY AT CHILDREN’S HOSPITAL OAKLAND
How is this for a homecoming? This evening we took Nicholas to CHO for a Pediatric Holiday Party and we say homecoming because of the connections with the MEDICAL STAFF, patients and their parents. After arriving in the Atrium, Nicholas saw his oncologist—Dr. Feusner—and the first thing Nicholas did was lean over and hugged him and affectionately put his head onto his shoulders. He then saw Dr. Beach and had a warm smile and hug for her, then Dr. Hankin and more hugs.
PATIENTS, he talked with Chris who was an older patient (about 12) when Nicholas was treated at CHO. They spent a lot of time talking then, and now too. And PARENTS of the patients, this was truly a homecoming for mom & dad as we embraced Dillon’s mom—Diane, Lauren’s mom—Emma, and talked with others met along the journey at CHO.
While events like this Holiday Party are for the kids, they are so helpful to mom & dad on multiple fronts. Most of us follow/try to support each other child’s website, share via email, and have some telephone conversations as well as live visits at home. However, the live conversations with other parents as we see our kids collectively enjoying each other and the excitement, coupled with free-flowing conversations with the staff, strangely provides some layers of comfort as we collectively fight for all of these beautiful kids.
BEAUTIFUL CLOSE TO THE EVENING AT THE NIEUWSMA’S HOME (Please click on View Photos)
This evening we spent time with long-term friends, Dave & Janie and their four girls: Victoria, Alexandra, Sophia, and Anastasia. Nicholas (well all of us) was treated to live music played by the girls. The music, they played the harp and the piano. On the harp, the girls played The First Noel, Oh Holy Night, Angels We Have Heard On High and other songs that complimented the spirit of love. Nicholas was so in-tune with the spirit of the night as he was wonderfully walking so much more, very vibrant, and lively loving us all.
AND TO EVERYONE, EVERYWHERE: We are so blessed by all of you via the way that you help, support, and love us. Thank you!
December 13, 2005 Blood Counts:
WBC: 2.2
HGB: 11.7
PLTs: 48
ANC: 946
___________________________
Monday, December 12, 2005 8:22 PM CST
FRIGHTENED AND PRAYING FOR EVERYTHING
This evening mom & dad received news that the HLA typing (included in the November 29 journal) has been completed and neither one of us match to the degree necessary for a Kier-mismatch bone marrow transplant or Haplo bone marrow transplant. Although it is not likely, Nicholas’ brothers will be tested tomorrow to determine if they match to the degree necessary (it will take a little over a week for the results).
We are frightened and know that we need to keep loving and trusting God’s love. We really do know this, and, it is just so hard not being able to just fix all of this for Nicholas.
Tomorrow, Nicholas will have blood drawn to check blood counts and other factors. An examination will be completed to help determine what we need to do while Nicholas is in Hawaii from this Thursday to the following Wednesday. Also tomorrow, we should learn more information about the HLA typing, testing of Nicholas’ brothers, and medical options. Tonight we will continue researching all of this from home.
And we will know that it is not about what we can do—it is about loving, trusting, and leaning on God.
Nicholas, he is having good days and relative to the rash and walking, they are improving daily. We are so happy to see his full ability to light up lives with his fun, joyful, and “teaching” nature (it is amazing to see him teach through his actions of caring and loving). Note: His hair has started to grow back on his head.
December 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, December 11, 2005 11:59 PM CST
WE WISH IT WAS CHRISTMAS ALL YEAR LONG
This evening Nicholas was able to visit all of our neighbors during the annual Brookdale Court holiday bash with neighbors celebrating neighbors (children and parents of all ages). While we only stayed about 15 minutes for Nicholas to say hello and interact briefly with his mask on, it felt so good to once again see our neighbors celebrating the spirit of Christmas.
Then an early Christmas dinner and a surprise early visit by Santa Claus at our family friend's home during dinner provided so much love and holiday spirit completely filling our hearts. Friends Reda & Soha and their two girls, Hana and Neda, provided an incredible gift to Nicholas as well as to mom & dad and two of our other three boys. They provided the spirit of Christmas—love. And what an amazing touch, Santa Claus came early with gifts for Neda, Hana, and Nicholas.
Do you know the Christmas song, Grown-up Christmas List? Following are the words and we PRAY our love and your love will continually help to comfort hurting hearts—and PRAY for God’s love to heal Nicholas who continues to be a loving soul helping many of us better understand love.
GROWN-UP CHRISTMAS LIST
Do you remember me?
I sat upon your knee
I wrote to you with childhood fantasies
Well I'm all grown-up now
And still need help somehow
I'm not a child
But my heart still can dream
So here's my lifelong wish
My grown-up Christmas list
Not for myself
But for a world in need
No more lives torn apart
That wars would never start
And time would heal all hearts
Everyone would have a friend
And right would always win
And love would never end
This is my grown-up Christmas list
As children we believed
The grandest sight to see
Was something lovely
Wrapped beneath our tree
Well heaven surely knows
That packages and bows
Can never heal
A hurting human soul
December 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, December 10, 2005 11:59 PM CST
THIS IS THE SEASON, AND THE REASON FOR LOVE
Teacher Ms. Shirley, friends Theresa and Kaeli (from LPCH and RMH), friend Gina, friend Cyndi, and relatives made the day one of love, reading, learning, fun, gratitude, and sharing.
Nicholas was “taking it all in” and was giving all of us a piece of him that we remember. For a moment, will you think about the “piece of me” (Nicholas) that touches your mind, heart, or soul? Whether it is his caring, giving, loving, or joyful nature Nicholas is showing it all daily more and more—what a blessing and what beautiful lessons of trusting in God and loving people. We know what Nicholas is facing medically, however, we really do believe…
…Will you also look at the poem above and its words, every moment we hurt and are so afraid fighting this fight. We are thankful for our trust in God and it still hurts so bad to be fighting this fight. Trusting is easy and it is still so hard. Yet we do believe…
December 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, December 9, 2005 11:59 PM CST
Day 385 since Nicholas’ original leukemia diagnosis
Day plus245 since the BMT
Day 89 of the relapse and Day 12 since the partial remission
CHILDREN’S WISH FOUNDATION
Nicholas’ first wish, to visit Hawaii again, has been approved by the Children’s Wish Foundation. The planning has begun with the initial itinerary provided. Next Thursday Nicholas will depart to Hawaii with mom & dad and his three brothers. A couple key segments of the itinerary include Nicholas to be up close and personal with Dolphin, and snorkeling. As his Songs of Love song goes, he likes galloping on the beach so we will look into Nicholas being on a horse and galloping on the beach.
“A GREAT TIME OUT” (As one of the Warriors’ tag line state)
Wow, the Golden State Warriors are an amazing organization—they truly care about people. Not only did the Warriors place Nicholas in a suite for the game tonight against the Detroit Pistons, they arranged for Thunder (mascot) to visit Nicholas in the suite before the game. Nicholas face lit up as bright as Rudolph’s’ nose. He was so happy to see Thunder again and was full of smiles. It wasn’t just about seats keeping Nicholas from the crowd or the visit by Thunder, it was the overall follow up by the Warriors to make tonight’s experience memorable!
And it was a great game (although the Warriors lost by 3 points). Nicholas had a hot dog, nachos, and lots of fun & laughter that filled his night. And KJ, his friend and former Ronald McDonald House neighbor, joined us in the suite for the second half of the game. KJ dances for the Warriors’ Junior Jam Squad and he lit up the floor during their performance tonight. And Nicholas’ brother Chris, who now works for the Warriors after graduating from college, bought Nicholas some cotton candy to help complete Nicholas’ great time out!
*Please Click On View Photos To See Pictures Of The Fun Night*
NEXT MEDICAL CHECK
Tuesday, December 13 will be the next check up for Nicholas at LPCH. Hopefully the HLA typing will be completed by then so we can review the findings toward making decisions on next steps and where. Lab work will be performed Tuesday to check Nicholas’ blood counts and other key levels. Also, based on the examination we may further taper down on the Prednisone (steroid), getting ready to stop it all together. Progress and good times are happening and although we understand the recent prognosis, we believe in God so we believe in miracles.
BELIEVE
Faith, Pray, Trust, Believe, Believe, Believe. Believe because miracles happen and we believe that with you, we are witnessing a miracle and PRAY that God’s love manifests itself to reveal Nicholas’ healing—and all the glory to God.
December 9, 2005 Blood Counts: (Next blood draw will be December 13)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, December 8, 2005 11:59 PM CST
VERY, VERY NICE DAY
Nicholas looks and feels good. And he had a few surprises—he got up and walked on his own a few times today. His spirit has fully awakened as he engages everyone around him with enthusiasm and joy. Like the sun peeking out from the clouds, a flower opening up revealing its vibrant beauty, or a body of water slowly and majestically providing whatever it is one needs from tranquility to playfulness, Nicholas' spirit and body is embodying them all.
And mom & dad are so thankful that God is in control of Nicholas’ life, our lives, and our joy. With so much pain we understand medically what is in front of Nicholas—and that understanding gives way to the true understanding of God’s omnipotence, omniscience, and omnipresence. And God’s love for Nicholas!
SOME GOOD MEDICAL NEWS
With yesterday’s blood draw, a sample was provided for an Immunoglobulins test (IGG) to measure the level of Immunoglobulins (antibodies) in Nicholas’ blood. Antibodies are substances produced by the body’s immune system in response to bacteria, viruses, or other foreign substances such as fungus or cancer cells. The goal was to have a level greater than 500, otherwise Nicholas would have to go back into the Day Hospital to receive another dose of IVIG (immune booster). He has been receiving these about once per month since the BMT pre-conditioning began on March 31. The good news, Nicholas’ level is 749 so he does not have to go back into the hospital or receive this treatment anymore. Another blessing!
TOMORROW, ANOTHER BEAUTIFUL SURPRISE FOR NICHOLAS
Before the November 19, 2004 diagnosis, Nicholas enjoyed going to Golden State Warriors basketball games. He especially enjoys the mascot, Thunder. Nicholas has been blessed to have Thunder visit him at our home and twice during treatment at Children’s Hospital-Oakland. Since the diagnosis Nicholas has not been able to go to any of the Warriors’ games, and through some special arrangements Nicholas will once again enjoy watching the Warriors and Thunder in person. Tomorrow night the Golden State Warriors are putting Nicholas in a suite (to provide the medical protection needed) so he can enjoy one of his passions—basketball. Hopefully, Thunder will be able to come to the suite to visit Nicholas.
December 8, 2005 Blood Counts: (Next blood draw will be early next week)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, December 7, 2005 11:59 PM CST
A GOOD DAY AT LPCH—YES IT WAS
There was laughter coming from a LPCH clinic room today—Nicholas’ smile was beaming and laughter chiming. Nicholas was having fun, in the hospital! And he was saying and having others say tongue twisters; we were all stumped on “Unique New York” while trying to say it three times, fast. We, certainly, recognize the seriousness of Nicholas situation and recognize that some people may not understand the smiles and laughter. However, our smiles and laughter are blessings to have and to share. As serious as the awful situation is, we are thankful for moments of laughter. Thankful that Nicholas’ spirit is shinning and ringing through all that is around him—for God is providing light and direction through these very troubled times.
TODAY’S MEDICAL POINTS
The rash is giving way to Nicholas’ true self and the doctors now consider it non-active GVHD. Remember, we were tapering off of the Prednisone (steroid) and went back up on the dose when the GVHD rash was flaring up over Nicholas’ entire body. We have begun to taper back down and will taper even further down tomorrow. Thank you, Lord.
Nicholas continues to improve so much on his ability to walk without pain and much more smoothly. He is vibrant and looks vibrant—what a beautiful overall change from what Nicholas has experienced over the last 1-2 months. And we give glory to God and thanks for guiding the minds and “hands” of the doctors. And praise Him for “providing” for mom & dad.
AND NEXT STEPS: While we are awaiting the HLA typing on mom & dad to help determine what type of transplant is an option for Nicholas as well as Nicholas’ blood counts to move up to their target ranges, the bone marrow aspirate to determine full remission may not be performed. The thinking is the assumption that Nicholas is going into full remission and that a bone marrow aspirate will be done shortly before another BMT (Haplo with mom or dad as the donor or a Kier-mismatch). A second round of Clofarabine, that he received November 1-5, is being planned prior to the transplant that will be an attempt to knock out any remaining leukemia. Note: Two weeks ago we did not know if we had time, now we do with at least the partial remission. And another round of Clofarabine before the transplant would be a course to take.
We expect the HLA typing results on mom & dad in the next few days followed by a conference with both Nicholas’ oncologist and BMT doctor by Wednesday of next week. So the overall plan is to:
1) Take Nicholas back to Hawaii at the end of next week
2) Come home to Lafayette
3) Go back to Stanford-LPCH for the second round of Clofarabine
4) Go back home to Lafayette for Nicholas to recover from the Clofarabine treatment
5) Prepare and perform either a Haplo or Kier-mismatch BMT. (And we may not have to go to St. Jude or the University of Minnesota for either one of these transplants because the protocols are available through Stanford-LPCH.)
The collected focus is on maximizing Nicholas’ health every day so that he can be at his strongest during another round of Clofarabine and a second BMT.
ANOTHER BEAUTIFUL SURPRISE: Nicholas has a horse named Fancy, well, it’s not actually his horse although it is a horse named Fancy and it has been available to him via the Tilden Park stables. (Available to all kids.) Today, we received clearance from Nicholas’ medical team to ride Fancy again. Especially because the damp weather will keep the dust down and keep potential-harmful things from Nicholas like mold, fungus, and other things the could be kicked up. Depending on the weather we will take Nicholas to ride Fancy sometime during the next few days.
BEAUTIFUL NIGHT AT MORAGA VALLEY PRESBYTERIAN CHURCH
Tonight, a prayer group led by one of the pastors at Moraga Valley Presbyterian Church got together with Nicholas and mom & dad for readings, prayer, anointment, and exalting God’s name and extending God’s love. What a blessing, this group included parents of Diablo Valley Montessori School (Lafayette) students where Nicholas was going before the diagnosis, and a couple that has followed Nicholas’ journey through a connection at Children’s Hospital Oakland (CHO). The connection at CHO is Dillon, who we met and is the child that Nicholas gave a stuffed bear to a few months ago—remember? We are so thankful for God’s love. He continues to provide for us even when we do not know it is happening.
Since November 19, 2004, our lives have been violently shaken and we have been brought to our knees. And through it we have remained on our knees—in prayer and love for our Father, God. There has been a constant love lighting the paths we have followed and truly constant love providing light warming and comforting our hearts. We place Nicholas in God’s hands and care, and there is no other love to warm, comfort, and deliver Nicholas free from anything that can harm him.
December 7, 2005 Blood Counts:
WBC: 2.2
HGB: 11.7
PLTs: 25
ANC: 1,150
___________________________
Tuesday, December 6, 2005 11:30 PM CST
RELAXING DAY (THIS "IS" A BLESSING)
Remember, several months ago when mom & dad were happy to say on several journals that it was “an uneventful medical day” because there were no medical issues or surprises. Well, that is how it was today—a day we were able to just be with each other however we wanted to and able to relax doing so. It was the first day in a very long time that we could sit down for a few moments and truly relax in thought and prayer.
LPCH TOMORROW AND SPECIAL PRAYER GROUP TOMORROW
Tomorrow we will be back at LPCH for lab work, focusing on Nicholas blood counts being in range (so another bone marrow aspirate can be performed). You know, like the poem above, “…it’s hard to believe the cancer is there…” What we do believe wholeheartedly is that God loves Nicholas so much and we believe His word so cancer or anything contrary to Love, and contrary to Spirit, has no place in Nicholas.
December 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, December 5, 2005 11:22 PM CST
GOOD DAY AT LPCH
Today’s lab work at LPCH revealed that 3 of 4 blood counts referenced daily on these journals have risen toward targeted ranges (listed above), and 2 of the 4 blood counts are in range. Nicholas has an absolute neutrophil count (ANC) of 1,280—this is wonderful. However, the platelets have dropped to 21 and we will be watchful and manage Nicholas’ activities to avoid falling or bumping with the platelets at this level. (Remember, it is expected that the platelets may take longer to recover.)
Nicholas continues to walk better and better; and medically, the doctors expect Nicholas to fully recover his normal walking ability.
NEXT APPOINTMENT WILL BE WEDNESDAY
This coming Wednesday lab work will be performed and we are praying that his blood counts are in range so another bone marrow aspirate can be performed to assess the remission status.
Note: We are still awaiting the HLA typing results on mom & dad, and then we will have a detailed conference with the doctors about decisions and next steps.
TRUST NOT HOPE
While it is natural for us to hope and pray that Nicholas overcomes all of the odds in front of him, we solidly TRUST in God and His love for Nicholas. As much as we LOVE Nicholas, and it is so hard to imagine any greater love, we know that God loves him even more. Because of His love for Nicholas, there is nothing that cannot be done for him. Our faith and prayers remain as strong as our love for Nicholas—the greatest love one can have for another.
December 5, 2005 Blood Counts:
WBC: 2.0
HGB: 11.6
PLTs: 21
ANC: 1,280
___________________________
Sunday, December 4, 2005 11:59 PM CST
Day 380 since Nicholas’ original leukemia diagnosis
Day plus240 since the BMT
Day 84 of the relapse and Day 7 since the partial remission
SPECIAL MOVIE DATE
Nicholas’ special movie date was with his BMT doctor and one of the Nurse Practitioners along with the doctor’s daughter, Jenna. It was Nicholas’ first time going to a movie theater since March 31, 2005 when he began conditioning treatment for his BMT. Nicholas was full of smiles and laughter—he said it was “nice meeting Jenna and sharing popcorn and other snacks with her.” Nicholas said, “I feel happy that my doctor and Karen came to see me, I didn’t have to go see them at the hospital.”
And the movie, it was “Chicken Little.” Nicholas loved when Chicken Little said, “Oh snap!” when Chicken Little was freaked out. Hearing Oh Snap! reminded Nicholas of the Disney TV show “That’s So Raven” because it is a common statement by Raven when surprised or excited.
What a beautiful, warm, and fun time for Nicholas, as well as mom & dad seeing and feeling Nicholas’ joy. And what a wonderful time Nicholas’ doctor and nurse practitioner provided through their heartfelt kindness—we are blessed!
Oh, and one movie note that made it seem so meaningful to mom & dad: There are a couple scenes in a movie theater and one of the lines stated toward the end of the movie was, “There are times when it seems the sky is falling, never give up because every day is a new day!”
On the way home from the theater we saw “the first star” of the night appear and Nicholas was about to make his wish and asked if he could have two instead of one, which of course the answer was “YES”. His wishes were that once he got all better that he’d not have to ever be sick again and to never have to take yucky medicine, never have to be back in the hospital, and finally that he wouldn’t even need to have any more check-ups! Seems like the two were stretched a bit, however, he’s entitled—for sure!
COUSINS AND FRIENDS
This evening Nicholas’ cousins Mikayla and Alex spent time talking and playing with Nicholas. And they provided another fun atmosphere for mom & dad to be comforted by seeing Nicholas’ natural smile and laughter.
And our entire family is so blessed with the love and actions from friends who have been providing dinner, conversation, and their time to be with us in whatever ways needed.
FOLLOW UP APPOINTMENT TOMORROW (MONDAY)
Tomorrow morning we will be back at Stanford-LPCH for a check up, lab work, and appointment with child psychologist (that we requested toward helping us better talk with Nicholas as he is so tired of this “leukemia and bone marrow stuff”). Remember, once his blood counts are in the target ranges (or other wise determined), another bone marrow aspirate will be performed to determine full remission. Although, the words “full remission” doesn’t change what medically is in front of Nicholas. Here too, we lean completely on God and trust His word…
December 4, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, December 3, 2005 11:59 PM CST
A GOOD DAY (FOCUSING ON GOD, LOVE, AND FUN)
There is nothing medical mom & dad want to talk about right now as we are focusing on God, love, and fun. We are praying and listening for His voice to direct the awful decisions before us. We have placed this terrible situation in God's hands—He will see Nicholas, mom & dad, and our family through it as we KNOW there is nothing too terrible for Him. PLEASE REFER TO THE END OF THIS JOURNAL AND TO THE WORDS OF THE SONG, His Eye Is On The Sparrow, for this is what comes to mind as we think about Nicholas and all the kids in need...
Nicholas’ friend Joey spent the afternoon with us and they played PS2 games, played on the play structure spotting the evenings’ first star and watching ducks flying by, played “tickle” games, and overall just spent time together. (Remember, Joey is Nicholas’ life-long friend. Together they have shopped with their moms, played with their dads, spent vacations in Vancouver, Hawaii, Montreal, taken gym sessions…)
Tonight, mom made a fire in the outdoors fireplace and Nicholas & Joey roasted marshmallows. Then we all sat around the fireplace gazing at the fire, listening to its sounds, looking up at the moon & the stars, while listening to Christmas music lighting up our hearts. PLEASE CLICK ON VIEW PHOTOS (Remember, other pictures that have been posted here are attached to the third album below under Links.)
Tomorrow afternoon (Sunday), Nicholas has a special movie date to watch Chicken Little—without mom & dad. For tomorrow’s journal, we’ll get his view on the movie and his thoughts about his special movie date.
As always, thank you so much for being with us.
His Eye Is On The Sparrow
Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.
“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.
Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.
December 3, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, December 2, 2005 11:59 PM CST
HAPPY TO BE HOME, QUESTIONS REMAIN THE SAME, SMILES & LAUGHTER
Nicholas awoke very happy to be home; however, before getting out of bed most of the same questions still circulate in his head and through tears and crying out to mom & dad. God is always the constant presence whether we are talking, praying, or crying together.
And while Nicholas was sad this morning, expressing, “I don’t have my smile back,” we talked and prayed together. We talked with Nicholas about examples of some of the good things that are happening: being home, walking better, able to have restrictions lifted on food and places to go (however, still having to be wise in terms of his exposure to a lot of kids in enclosed places)… And we recognize that these things do not minimize Nicholas being so tired of all the medicine, his Broviac (central line) still in his chest, and not feeling at all like “himself.”
However, this afternoon we walked to our side yard to play and have lunch on his new play structure (deciding to eat on the attached picnic table or in the upper clubhouse). Before Nicholas knew, he had his “smile” back. In fact, he had his smile, his laughter, and his always constant—love—that warmed our hearts so gently and strong. We decided to eat lunch in the upper clubhouse. Nicholas loved the upper clubhouse and enjoyed the attached telescope: he could see the bike trail, better advantage for looking at planes, birds, and today lots of “shapely” clouds. And it was his place to be away from so many things on his mind (on our minds).
SPECIAL SURPRISE DRIVE TONIGHT
Constant in our journals and on the guestbook are the wonderful people we have met over the last few years at Diablo Valley Montessori School in Lafayette. Tonight, Nicholas visited the annual Posada holiday event held by his former class, at one of the parent’s home. The piñata portion was in the garage so Nicholas was able to be on the outside (dressed toasty warm) and was able to take a couple swings at the piñata. It was nice for him to see some of his friends, their siblings that he knew, and parents that he knew.
And for the eating and movie portion, we stayed just long enough for Nicholas to have two slices of pizza and some love-filled hellos. After his first bite into the pizza, Nicholas turned to mom & dad and said, “This is good!” It was the first time since prior to March 31, 2005 that he had pizza from a pizza parlor.
NOTE: The complete update on yesterday’s conference with Nicholas’ oncologist and BMT doctors that we were going to provide today will be provided after our HLA typing conference. The most difficult decisions of our lives will be stated at that upcoming conference, and it should take place by December 12.
PICTURES: While we have some pictures on the View Photos portion of this site, please click on the third album under Links and scroll to the pictures toward the end for recent and current pictures.
December 2, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, December 1, 2005 11:59 PM CST
HOME, SWEET HOME
Nicholas is home! We left LPCH at 4:00 this evening and Nicholas’ request before arriving home was to go to the Blue Gingko restaurant. We did, and he had salmon teriyaki, shrimp tempura, California rolls, and Edamame (boiled soy beans).
VERY TIRED-COMPLETE UPDATE TOMORROW (FRIDAY)
Tomorrow we will provide a complete update on today’s conference with Nicholas’ oncologist and BMT doctors. Not surprisingly, there was a lot of discussion on the medical expectations for Nicholas if he undergoes conditioning chemotherapy before any type of BMT can be performed, medical expectations with any other type of BMT, and medical expectations if no other treatment at all was performed. And there is a lot of discussion we will have in about 10 days when the HLA typing is complete on mom & dad.
While we are overjoyed Nicholas is at least in partial remission and we pray that he gains full remission to be determined when his blood counts rise into target ranges, what medically lies in front of Nicholas is a very, very, very difficult path. And, we know that there is no path that is difficult or too difficult with God—we just know it!
The next few days we will be on our knees, lifting our arms up, raising our heads, and praying our Father, God, comforts our hearts and feeds our minds with direction…
NICHOLAS FIRST ACTIONS AT HOME
We arrived home and what a huge surprise was awaiting Nicholas. We went out into the back, side yard to see a big, beautiful new Rainbow play system that replaced an older one that Nicholas had. The new play system is a gift spearheaded by Judy M Diablo Valley Montessori School (DVMS) mom. And it was installed by friends from Nicholas’ DVMS and our Brookdale Court neighbors while Nicholas was in the hospital: Greg M, JR R, Sean C, Jesse O, Ed B, Mike K, and Harry K.
Words cannot adequately communicate the heartfelt love we feel that continues to be expressed to Nicholas. We are so deeply thankful for everyone's actions through amazing actions like this play system, and the actions of all of you who directly or indirectly touch our lives. As we have said so many times, we know that we are blessed. Thank you all!
And then, Nicholas was off to his room where he sat down and made a Christmas gift for mom. Then he wrapped it himself, topping it off with a bow.
SO MANY PICTURES TO SHARE
Tomorrow evening we are planning to update you with pictures from the last couple of weeks we were in the hospital (including Nicholas making mom’s gift).
HAWAII (NOT THE PLACE IN THE HOSPITAL WE CALL HAWAII)
Details later, however, we are planning to take Nicholas to Hawaii in about two weeks. He has been given the okay to swim with the dolphins in the ocean...and tonight he was reflecting on our Hawaii trip 1 1/2 years ago (please refer to the first album below titled A Few Months Before Diagnosis).
December 1, 2005 Blood Counts:
WBC: 0.6
HGB: 10.2
PLTs: 50
ANC: 400
Wednesday, November 30, 2005 11:30 PM CST
UPDATE #2, 9:30 PM PST
GOING HOME TOMORROW IS THE PLAN (WE’RE PACKING NOW)
We have had many “homecomings” over the last year and each one of them are like a vacation, in terms of the excitement to get there and the things planned to do. And like some vacations, we just want to experience the place—being home. The ups and downs: blood counts, emotionally, and physically, have been terribly hard to get through during this 17-day hospital stay. It has been hard because of the culmination of the last 376 days. Mom & dad realize that as hard as it has been for us, it must just be a fraction of the overall impact to Nicholas—because he has to also deal with the physical pain of the process.
And we received broad instructions to do what we would normally want to do while we’ll be home for a week. Of course, we were told to assess the places we plan to go to so we do not have Nicholas in an environment with a lot of people. Primarily we need to assess if there are a lot of kids where we want to go because of exposure to potential infections.
BEFORE GOING HOME TOMORROW
Tomorrow afternoon we will meet with Nicholas’ oncology doctor and his BMT doctor in a conference about the process moving forward and next steps. The conference should include:
· Approximate day next week for another bone marrow aspirate (after Nicholas blood counts reach target ranges) to assess if he is (medically) in full remission.
· Discussion on a potential Haplo BMT with mom or dad being the donor. Because there is a possibility that even though mom & dad are exact half-matches, neither one of us will match to the degree necessary for this type of transplant so we will also discuss a Kier-mismatch BMT. Note: The HLA typing on mom & dad will not be complete until sometime late next week so decisions will not me made tomorrow (Thursday).
· Whether or not either one of these types of BMTs for Nicholas will be performed here at LPCH, St. Jude in Tennessee (Haplo), or University of Minnesota (Kier-mismatch).
· The thinking on what BMT conditioning treatment Nicholas can (medically and physically) tolerate and makes the most sense. Including what chemotherapy or other method will be used to clean out the marrow to make room for the donor marrow for a Haplo or Kier-mismatch BMT.
· When the conditioning and BMT will be performed.
TONIGHT
· Nicholas, mom & dad went outside the hospital tonight (well, just to the circular entrance) to watch the “Light The Night” Christmas celebration and listen to live Christmas music from a school band and some Christmas Carolers (dressed like you would expect traditional Carolers to dress). And guess what, for the second day in a row a magician was performing here at LPCH, at the celebration. (Pictures should be posted over the next several days once we get home.)
· Nicholas, while crying about all the things he is going through said, “I wish I had a time machine so I can go back to make it so my wrist never hurt, so I didn’t have to have all this stuff and not have to be sick. Or go forward so I can be better already.” Well, we can only think of what is real, that we have God and “In God’s speed” Nicholas is serving Him and the pureness of his body as well as bone marrow is being revealed.
UPDATE #1, 8:50 PM PST
GOING HOME TOMORROW (THURSDAY)
Hooray, we are going home tomorrow afternoon and expect to be home for about one week. Complete update of the day will be posted later tonight.
November 29, 2005 Blood Counts:
WBC: 0.6
HGB: 7.5 (RBC transfusion this morning based on the HGB count)
PLTs: 67
ANC: 288
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Tuesday, November 29, 2005 11:59 PM CST
Day 375 since Nicholas’ original leukemia diagnosis
Day plus235 since the BMT
Day 79 of the relapse
CELEBRATORY BONE MARROW RESULTS
Yesterday’s celebratory bone marrow results mean that Nicholas does not have to undergo another round of chemotherapy to get him into remission.
NEXT GOAL TOWARD FULL REMISSION
The doctors expect Nicholas’ blood counts to begin rising tomorrow (Wednesday) toward the target ranges. And they expect he will record an ANC (ability to fight infections) for the first time since November 5, 2005. Along with normal bone marrow (free of leukemia), full remission will be when Nicholas has an ANC of 1,000, normal WBCs, and PLTs of at least 100.
AND THEN ANOTHER BMT-DONOR BEING MOM OR DAD
Previous journals talked about a Haplo BMT, with mom or dad being the donor, which essentially means a half-match. (Having a match like April 7 did not produce enough GVL to ensure a fight against any leukemia that could have been “hiding” as we experienced causing the relapse.) The half-match by nature of it not being a “match” will produce a fight and the hope of effective GVL. More on a second BMT, Haplo transplant after further discussions with Nicholas’ doctors.
Today, blood was drawn from mom & dad so High-resolution Human Leukocyte Antigens (HLA) typing can be performed. These proteins give an individual his or her unique tissue type. The results will determine which one of us will be the donor for Nicholas’ second BMT. (Mom & dad are exact half-matches to Nicholas; however, the High-resolution typing provides critical factors toward determining which one of us should be the donor for the desired activity to take place in Nicholas’ body.)
AN ARRAY OF SURPRISES FOR NICHOLAS TODAY
Snapshot: Nicholas received a bamboo back-scratcher from one of the nurse Trang; nurse Juliette demonstrated the making of two origami figures—Somersaulting Frog and a Flapping Bird that were given to Nicholas; and this evening a magician performed for patients in the oncology unit—Nicholas participated in making an egg disappear and reappear. After the performance, mom went to Nicholas’ room retrieving Nicholas’ box of magic tricks. Nicholas performed with the magician there as well as after the magician had to leave to visit other units in the hospital.
WHEN WILL WE BE GOING HOME?
For a relative short stay compared to the 45 days we were here (LPCH) for the first BMT, the past 16 days have been very, very, very hard. However, it’s true, Love conquers all and “love” does wonders enabling us to “more than just keep going.” Love fulfills, sustains, and guides us! Thank you, Lord.
We expect to be able to go home after two consecutive days of an ANC of at least 500, and free from fever, bacteria, or viruses. We are hoping to be home by the weekend—any day will be great to go home.
Photos Note: We have lots of pictures from the past 16 days and will post many of them when we get home (access to our home PC and the camera program).
November 29, 2005 Blood Counts:
WBC: 0.5
HGB: 8.1
PLTs: 91
ANC: NA
___________________________
Monday, November 28, 2005 6:20 PM CST
UPDATE #2, 4:20 PM PST
CELEBRATION!
We just received a telephone call from our doctor who was in the laboratory looking at the marrow drawn today. The first word he said to us was, “Celebration.” And then he said the marrow looks good: there are lots or RBCs and PLTs, “ALL KINDS OF GOOD STUFF READY TO COME OUT.” While the analysis is still underway, at the very least Nicholas is in “PARTIAL REMISSION.”
RASH
Because the doctors do not expect Nicholas is getting any GVL effect with the GVHD, today we will go back onto Cyclosporine to better manage the GVHD. And to work toward getting rid of the rash.
WORK STILL UNDERWAY
We are so thankful for the doctors, nurses, the entire staff working on Nicholas; and we know that there is still more work to be done. However, along the way we feel it is the right thing to do—and say—when appreciation is felt.
More importantly, along the way our love for God and trust remains solid. Even though we do not know what we do not know. And although this is one step of several more and the steps ahead could be slippery, our love for God and trust is what we said and choose to always say—it is solid.
And thank all of you so much for “being with us” in the ways that you are!
*EARLY MONDAY UPDATE—OPERATING ROOM PROCEDURE TODAY* 10:45 AM PST
The scheduled Tuesday bone marrow aspirate (BMA) in the operating room has been moved up to today at 11:30 AM PST. IT Methotrexate (chemotherapy) will also be administered into Nicholas spinal fluid "as a precaution" to fight any Leukemia that may be there. And a Platelets transfusion will be performed in the pre-operating room as well.
Also, while we (of course) were praying for the WBC to rise toward the target range, once again they have come down. The target range is 5.5-15.5 and since the last Clofarabine dose on November 5 it has gone up and down from 0.1 to 0.3, 0.4 to 0.5, back down to 0.3, to 0.4, 0.5, and back down today to 0.3. While this is very agonizing we are not dismayed. We continue to trust and believe in God!
Please PRAY with us that Nicholas’ marrow from the BMA will reveal the truth—that Nicholas marrow (his whole body) is pure and perfect because God’s Love and Spirit operates within Nicholas.
November 28, 2005 Blood Counts:
WBC: 0.3
HGB: 8.5
PLTs: 17
ANC: NA
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Sunday, November 27, 2005 11:59 PM CST
GOOD DAY
“Every” day is good day for mom & dad to just be with Nicholas. Today as always there was “complete” love & devotion to Nicholas as every mother and father would provide! We thank God for the blessings enabling us to be what we need to be for Nicholas.
EVERYTHING THAT MADE UP THE DAY
And there was happiness. Also, there were sad moments with Nicholas crying on our shoulders wanting to be healed (no more rash, no more medicines, free from the IV pole and pumps, etc.). There was a lot of worry over the rash and there was—and is—a lot of worry over every thing that goes on around Nicholas and all this “bone marrow and leukemia stuff.”
WBC AND PRAYING FOR KIDS
Although ever so slightly, Nicholas’ WBC came up this morning (Sunday) and we pray that his patience & our patience with complete love for God will see his WBC continue to rise to the target range. Including all of his blood counts—Nicholas deserves it! We say deserve it and our hearts ache wanting all of these kids faced with life threatening diseases to be healed—they deserve it too. We praise God for the many blessings (small and big) in our lives and we pray for Love to be manifested in all of these kids’ bodies because they are God’s perfect children.
NEXT STEPS
Having two consecutive days with an ANC of at least 500 so Nicholas can go home. And Tuesday, when a bone marrow aspirate will be performed to analyze the marrow with a goal of seeing no blasts (no leukemia cells).
November 27, 2005 Blood Counts:
WBC: 0.5
HGB: 9.4
PLTs: 29
ANC: NA
___________________________
Saturday, November 26, 2005 11:59 PM CST
GOOD DAY
Nicholas is so lucky to have always had amazing nurses that care for him in all aspects of the word. Day and night, he enjoyed playing with them and this time receiving a massage from them today and tonight. And this evening he spent time in the place we call Hawaii (remember, this is the outside quad with a large fountain, flowers, bushes, and an open view to the sky).
And remember the first star we saw one evening last week, Nicholas saw that star again this evening and after gazing at it, we looked at each other and smiled. In the midst of everything that is so serious and scary, we are so thankful for little things that add a sparkle to Nicholas’ moments.
RASH
The rash on Nicholas’ entire body is worrisome—Nicholas’ BMT doctor will examine it tomorrow. 1) There is an option of administering high-dose Prednisone (steroid) for a couple of days in an attempt to “knock it out.” 2) Another option is going back onto Cyclosporine because if the rash is GVHD, Cyclosporine will suppress the immune system responding to the donor cells that would be causing the rash. 3) And an option of continue watching and examining the rash if it is felt the benefit of GVHD and any GVL effect is at work destroying any potential leukemia.
Naturally, our priority is whatever is best for Nicholas including his comfort—and this too is so hard to determine. We trust in God and listen so hard for guidance. The rash and itching has been going on for a couple of weeks so it is actually normal to see Nicholas wanting to scratch although multiple intervention has been taken. So, focusing on no negative implications and praying for the GVL effect, we will further discuss all of this with his BMT doctor. During the day and before bed mom & dad combine a massage with applying cream for his face/head, and low-dose steroid cream on the rest of his entire body trying to provide some comfort.
DAY BY DAY BY DAY BY DAY
We understand that we do not have a choice in Nicholas’ cure AND we so, so long for the day that our baby is healed in all aspects of the word. We will never take what was our “normal” life for granted, never, as we pray for Nicholas’ healing and ability to do the “normal” things. We will forge new-normal things, however, our prayers include to continue living together without constant fear of all this leukemia stuff! Well, we do have a choice in how we respond and that choice is continuing to trust God, and to love, love, love.
TONIGHT’S READING
“The First Christmas” was the book mom read to Nicholas tonight and after reading it she asked Nicholas a series of questions about the first Christmas. Mom & dad looked at each other and smiled—Nicholas had all the answers.
November 26, 2005 Blood Counts:
WBC: 0.4
HGB: 8.7
PLTs: 31
ANC: NA
___________________________
Friday, November 25, 2005 11:59 PM CST
STATUS MEDICALLY AND WHAT’S NEXT
We stated that it is expected that blood counts could be low until 14-20 days after the last Clofarabine dose and today is the 20th day. So, we were very sad that this morning’s WBC came down from 0.5 to 0.3. Although it is low and came down, we recognize that it is not “trending” down. And we are not discouraged because, again, we are reminded of God’s words including, “Be still and know that I am God.”
The doctors said THE RECOVERY CAN BE LONGER than 20 days and are encouraged that Nicholas is not otherwise sick—no fevers, no side effects causing intervention, in good spirits… Also, Nicholas’ doctor said Platelets could even have a longer recovery period.
With the RASH still present over Nicholas’ entire body, the medical intervention taken is the increase in the Prednisone dose from 10mg twice per day to 15mg twice per day. The rash seems to improve one day and then seem to have no improvement the next day. This is puzzling to the doctors (and so familiar, like the rash & steroids after the BMT although the rash then was not over his entire body). Although the dermatologist and pathologist determined it to be GVHD, we have asked the doctors to look into it being a drug (like Clofarabine) related rash although the intervention would be the same as being taken. AND with GVHD it could be a graft-versus-leukemia (GVL) effect happening, fighting to destroy any leukemia that may be around.
This coming TUESDAY’S BONE MARROW ASPIRATE: If there is no leukemia we will wait for Nicholas’ blood counts to rise toward the target ranges before next steps can be taken. If there is leukemia an option would be to do another 5-day course of Clofarabine.
HOW WE FEEL
Our faith keeps us strong; AND we hurt, hurt, hurt seeing what Nicholas is experiencing along with his reactions to what he experiences. AND during all that he is experiencing, Nicholas’ communication with everyone continues to amaze in terms of him being so aware, caring, and thinking how to please others. AND with our hurt and wondering why…, we struggle terribly to understand.
We are so thankful that Nicholas is alive and blessing us all with his love—AND we just want the discomfort, emotional feelings, pain, and the leukemia to be gone, declaring that it has no place in Nicholas. We ask for this over and over seeing that Nicholas is doing everything right—he has so much more love to share.
Notes:
Nicholas had a very good day: spending time with his friend Joey, games with hospital staff members, getting a massage from his nurse, and time playing and relaxing with mom & dad.
Yesterday’s Thanksgiving dinner for Nicholas included turkey, dressing, mash potatoes & gravy, green beans, cranberry sauce, pumpkin pie, and more.
Friday, November 25, 2005 6:03 AM CST
November 25, 2005 Blood Counts
WBC: 0.3
HGB: 8.9
PLTs: 41
ANC: NA
Thursday, November 24, 2005 11:59 PM CST
Next labs will be drawn at 2:45am (Friday) so results will not be available until around 4:00am.
___________________________
Thursday, November 24, 2005 11:59 PM CST
Day 370 since Nicholas’ original leukemia diagnosis
Day plus230 since the BMT
Day 74 of the relapse
THANKFUL FOR A GOOD DAY
From morning through night, Nicholas had a good day. He played and spent time on artwork in and out of his room. We spent time on the hospital patio—warmly bundled up. Outside, an older patient was sitting on a bench by herself, bundled up as well (with colorful leaves falling from a nearby tree). Nicholas asked if he could go over and meet her so we did. Her name was Jolene, a 24 year old, who was in the hospital by herself. Nicholas loves meeting people and enjoyed talking with Jolene; he wanted to keep her company.
Nicholas had a good Thanksgiving dinner in the hospital shortly after noon. And for our dinner, dad’s sister and brother-in-law provided us with everything, everything to enjoy a full Thanksgiving meal. And Nicholas had a second Thanksgiving dinner tonight as he ate with mom & dad and one of his three brothers. He REALLY enjoyed his meals all day.
NICHOLAS’ COMMON WORDS TODAY, UNDERSTANDABLY, ABOUT THANKSGIVING
Mom & dad are thankful that Nicholas was in great spirits all day. And following is what he said to everyone he talked to on the phone and who visited him in his room, along with personal thoughts, “…Happy Thanksgiving, happy turkey day, and enjoy your feast!” And when he only talked to his friends (kids), he said, “Say that to them, okay?” asking his friends to say the same Thanksgiving wishes to their parents for him.
MEDICAL NOTES
Rash on his whole body “looks” to be getting better in most areas and his skin is starting to peel in some areas—we do not know if this is a start of it getting better. We pray that his WBC and ANC are now starting to rise toward the targeted range. He continues to walk with greater ease each day. We are THANKFUL for faith, faith that Nicholas is being healed in Jesus’ name and for God’s word of Love.
November 24, 2005 Blood Counts:
WBC: 0.5
HGB: 10.4
PLTs: 70
ANC: NA
Thursday, November 24, 2005 4:43 AM CST
*A Thanksgiving Blessing—the WBC jumped to 0.5*
It’s very early Thursday morning and as we were posting Wednesday’s journal, the lab report for blood drawn at 12:30am Thursday was delivered.
November 24, 2005 Blood Counts:
WBC: 0.5
HGB: 10.4
PLTs: 70
ANC: NA
Wednesday, November 23, 2005
Nicholas had a good day: a lot of activities, visitors from within the hospital (staff from departments like recreational therapy, child life, and nurses/nurse practitioners) as well as friends outside the hospital.
Following up on our request, a child psychologist talked with mom & dad today. She will begin to spend time with Nicholas just visiting and being present for him in partnership with mom & dad. The focus is to provide another avenue for conversation.
Next Tuesday, November 29, a bone marrow aspirate will be performed to check Nicholas’ marrow. We continually pray that it will be free of cancer so we can move toward another bone marrow transplant (remember, a half-match with mom or dad being the donor this time). We pray for Nicholas’ blood counts to begin rising into range and for healing, complete healing now, so he can enjoy life with his family and continually do things to please God.
It’s moments away from Thanksgiving and although we are in the hospital, we know that we have been blessed and give thanks to God and all of you—our family, friends new and old, and acquaintances in the hospital and through this CaringBridge site.
· We give thanks to AAA for being an employer that doesn’t just say they care, they consistently demonstrate it at all levels of the organization and look for ways to “be there” for Nicholas as well as mom & dad.
· To employees at AAA. You consistently and continually anticipate and show up in ways that are always exactly what we need even when we don’t always know what we need.
· To Diablo Valley Montessori School (DVMS) for their continued love and beautiful actions that parents could only pleasantly dream for their school to be in an awful time like we are experiencing.
· To parents of DVMS students that know Nicholas and those that do not know Nicholas now that he has been out of DVMS for over a year. You have been more than amazing in giving of your love, time, energy, cooking, AND incredible actions that a person “wouldn’t” dream because they would be too incredible.
· To all of our neighbors—parents and kids—on Brookdale Court. You have been like sisters and brothers in giving of yourselves, making our homecomings so warm and special, delivering Halloween a day early enabling Nicholas to fully enjoy Halloween although he was going back to the hospital on Halloween…
· To the staff at Children’s Hospital Oakland and Lucile Packard Children’s Hospital for the level of care that one would expect AND much, much more.
· AND to you for taking the time to be with us in the unique ways that you do—we KNOW that we are blessed to have you in our lives.
Please, have a loving Thanksgiving!
And please pray for the kids with life threatening deceases, their parents, and their families—pray for Love to consume their thoughts and for love to manifest itself to reveal Love throughout their bodies.
November 23, 2005 Blood Counts:
WBC: 0.3
HGB: 10.5
PLTs: 6 (Platelets transfusion this morning, Wednesday, based on this count)
ANC: NA
___________________________
Tuesday, November 22, 2005 11:59 PM CST
ACTIVE DAY
To see Nicholas the last day and a half, you would see a little boy working very hard in face of things that are very hard to face. He had an active day playing, walking, drawing, painting, and exercising. He is working so hard to get out of the hospital, to walk so he can run, to get his “happiness back,” and to get his “life back” without a Broviac (the central line in his chest). We had a happy day in spite of many things that were hard to face today.
Note: Today, when Nicholas heard that Kaeli (you know Kaeli, the other BMT patient he met at the RMH) was in the LPCH Clinic because she wasn’t feeling well, he asked to go to the gift shop to buy something to cheer her up. He bought her a coin purse and met in the hospital to give her the gift.
NICHOLAS’ THREE WISHES TO CHILDREN’S WISH FOUNDATION
Following are the wishes Nicholas chose in order of his preference:
1) Trip to Maui, Hawaii with his family so he can swim with the dolphins and snorkel. In May 2004, six months before Nicholas was diagnosed, we took a trip to Maui and Nicholas always talked about going back. In fact, when you listen to Nicholas’ Song of Love, you will hear the line “…He likes snorkeling, dolphins, and swimming…”
2) Trip to Disneyland with his family. Nicholas, mom & dad have already been to Disneyland; and before Nicholas was born, mom & dad and Nicholas’ three brothers were at Disneyland.
3) Nicholas wants to meet, with his three brothers, Michael Jordan and get some basketball training from him “because he is a really good basketball player and I have never met him.”
BEAUTIFUL SURPRISE
Remember the November 3 journal and the song, Beautiful Surprise? Truly, every moment, day, week, month, and every year of Nicholas’ life—not just this past year dealing with all “this leukemia and bone marrow stuff”—Nicholas illuminates rays of sunshine that warms hearts. The beautiful surprise is “love” and the love touches and without boundaries penetrates so many lives and hearts. God’s work is so pleasing! Please God, let Your work (Nicholas) continue to do Your work. Nicholas gladly loves and serves You, Lord; and we gladly love and serve You, Lord.
TODAY’S SLIGHT WBC INCREASE IS A BLESSING
While the WBC increased from only 0.3 to 0.4, it is a blessing to see it moving in the desired direction. We believe, we really believe Nicholas’ blood counts will rise into their desired targets. With healing, we need his blood counts to rise so he has at least a 500 ANC, and we need his blood counts to rise so we can test his bone marrow—loving and praying Nicholas goes into remission, “perfect and pure.”
November 22, 2005 Blood Counts:
WBC: 0.4
HGB: 11.1
PLTs: 15
ANC: NA
___________________________
Monday, November 21, 2005 4:18 PM CST
*UPDATE #2* (11:59PM)
LOTS OF ACTIVITES AND INTERACTION
Thankfully, Nicholas had a full day and night of activities with Books-A-Live, interacting with the nurses outside and inside his room, shooting baskets in his room, trip to the gift shop, walking up a flight of stairs (with mom & dad’s help)… In spite of today’s news and disappointment not to be going home, Nicholas had a good day.
CHILDREN’S WISH FOUNDATION
Nicholas spent time writing out three favorite wishes, and mom & dad completed paperwork for the Children’s Wish Foundation International, Inc. At Children’s Wish Foundation International, their goal is to fulfill a child’s wish in a way that will make it the greatest experience possible. Their planning includes many personal touches and a focus on making it as unique as the child.
Although we have submitted this paperwork for one of Nicholas’ wishes to be granted, we are continually praying for Nicholas to be healed, in Jesus’ name we know it can be done through God.
Note: The Prednisone dose was increased from 10mg twice a day to 15mg twice a day because of skin GVHD.
*UPDATE #1*
NICHOLAS IS NOT GOING HOME TOMORROW (Tuesday). Nicholas' immune system is still too compromised. His WBC is too low and as a result there is no reportable ANC. His ANC needs to be at least at 500 to have some ability to fight off any sort of infection that he may be exposed to.
WE ARE THANKFUL FOR MANY, MANY THINGS (including your continued connections with Nicholas) and we still hurt for many, many reasons (like those listed on last night's journal).
THE BODY & FACE RASH HAS BEEN DETERMINED TO BE GVHD. We are not sure what the intervention will be other than increasing the Prednisone (steroid). Remember the Cylclosporine and Prednisone "roller coaster" Nicholas experienced since his BMT? Well, we pray for effective treatment and overall results to eliminate the rash and that he is shielded from side effects.
AND WE KNOW THAT WE DO NOT HAVE TO FACE ANYTHING CONTRARY TO NICHOLAS BEING GOD'S PERFECT, PURE CHILD. We firmly believe this to be true, we don't just wish it to be true. Please, please, please PRAY this truth with us. Nicholas' prayers are such a heartfelt conversation with God and we patiently look to God's loving answers and delivery of Nicholas "to be normal."
November 21, 2005 Blood Counts:
WBC: 0.3
HGB: 10.7
PLTs: 20
ANC: NA
___________________________
Sunday, November 20, 2005 11:59 PM CST
NICHOLAS’ PRAYER
“I want my life back; I want my happiness!” These have been the common words in Nicholas’ recent prayers and his very deep conversations with mom & dad. It hurts so much to hear his cry, and his SHAKING voice saying to mom & dad, “I want you to understand what I am saying…” We cry, pray, talk, talk some more, pray some more, and focus on love and togetherness. Love we receive and share. Love within and around Nicholas’ body that is at work through God. Dear God, we pray for an answer to the prayers of our little angel, show him you do listen and answer prayers….we need some steps forward to help him keep stepping…we pray this in Your name!
RASH ON ENTIRE BODY AND FACE COULD BE GVHD
The rash on Nicholas entire body could be GVHD so tomorrow the dermatologist team will examine Nicholas. A skin biopsy will be discussed to help identify the rash (remember, the one performed on October 26 was negative for GVHD).
AND CREATING TIME FOR PLAY & FUN
Nicholas and nurse Jill did lots of art today, and a little PS2 fun with interactive games. Oh, and last night (Saturday) during Nicholas’ bath, mom was teaching spelling and some sentence structure as they used bathtub-crayons for fun while learning.
HOME SOON?
Tomorrow the doctors will discuss, with us, Nicholas’ discharge. The plan was for this Tuesday and all of the latest blood and stool cultures have been negative (a good thing). It appears Nicholas’ blood counts/immune system will be important points to consider before a discharge. More importantly, through God’s omnipotence, omniscience, and omnipresence, all things are possible and healing is His word, in Jesus’ name we fervently pray.
November 20, 2005 Blood Counts:
WBC: 0.3
HGB: 10.5
PLTs: 28
ANC: NA
___________________________
Saturday, November 19, 2005 11:59 PM CST
RED BLOOD CELL (RBC) TRANSFUSION: This morning at 3:45 Nicholas’ hemoglobin (HGB) had dropped to 7.0, which was a bigger drop than the doctors expected. There was concern about possible internal bleeding so an early morning “fire drill” was underway. Thankfully, there were no signs of bleeding. A RBC transfusion was given and later at 9:45 this morning Nicholas’ HGB was at 10.5.
MOM & DAD’S CONCERNED WITH BLOOD COUNTS REMAINING LOW; however, remember, in a journal a few days ago we talked about the expectation that blood counts could remain low for 14-20 days after the Clofarabine treatment that ended on November 5. Also, the doctors shared that the Clofarabine effect is like a mini transplant so the marrow is not expected to produce as normal at this time.
CRYING: “Father, why doesn’t God give me what I need…it’s no use, I keep doing what you ask and praying…” Nicholas does do what is asked of him by mom & dad, the medical staff, and he prays diligently—loving God. It is very hard to answer some of Nicholas’ questions and we tell him so. We talk about trusting God and at the same time letting Nicholas know that we do not know exactly what is planned for us—except that His love for us is always the foundation for directing everything around us.
Hearing Nicholas crying and praying in his room, one of the nurses shared the moment with other nurses. Another nurse, who said she was “moved” by Nicholas’ deep conversation and prayer, came in to share a story with Nicholas. She talked about a little girl who had a disease the caused her bones to be very fragile. The little girl was unable to do a lot of physical things that others did, including playing outside. She would see other kids playing and wanted so very, very bad to be outside playing. This little girl developed a love for painting and became an accomplished artist. The little girl who grew into the artist came to understand that she might never have realized her love for painting if she was able to be more physically active… While this is just an example, we realize that there are other examples that may not be as positive, however, we believe God’s words and trust His love will lead Nicholas to joy and happiness. And along the way there is already joy and happiness!
Mom & dad have a feeling of helplessness. Unable to just kiss “it” and make it go away. Today, mom felt so depressed and we feel so useless because we can’t make the itching go away, can’t fix the things that he cries out to God, asking Him to fix them. Today marks one year since the diagnosis; we look at Nicholas going through all of this and like Hana wrote in her project (included in one of these recent journals), we “wonder why.” And there are so many other kids…we wonder why.
MOVIE NIGHT watching Madagascar brought back happy moments and generated new-happy moments as we sat on the window-bench seat with popcorn and juice. We had a “crackalacking” time as Marty (the zebra) would say.
November 19, 2005 Blood Counts:
WBC: 0.2
HGB: 7.0 (RBC transfusion today based on this count); 10.5 a few hours after the transfusion
PLTs: 39
ANC: NA
Friday, November 18, 2005 11:18 PM CST
AS HARD AS “THIS” IS EVERY MOMENT OF EVERY DAY, THERE IS A GALLERY OF LOVE AND LIFE LEADING OUR WAY
“CAN I CRY ON YOU RIGHT NOW AND PRAY?” These were some of Nicholas’ words today, as they have been everyday for the past several weeks. A few times a day Nicholas wants mom and/or dad to just hold him while he cries and we pray. For us, we tell Nicholas that crying is such a genuine, close way of talking with God and it feels so good to cry on His shoulder. It feels so good to really “communicate” with our Father!
THE THREE ANTIBIOTICS discussed a few days ago are still being administered each day, around the clock every 8 hours, which is part of the 10-day process because of the Gram Negative Rod bacteria identified Monday. We pray that the antibiotics continue to do their job of keeping Nicholas free from harmful bacteria in his body. We first and always pray for the Love and Spirit within Nicholas to do their job, knowing that their job reveals the truth and has the power over everything! Then again, it’s almost like asking God to be God so our prayers are really acknowledging Him and recognizing Him as our Father.
ANOTHER TRICK learned and performed today. Nicholas takes two 3-inch tall rabbits and turns the two into… Well someday you may, personally, find out the outcome of this trick that “really” tricked mom & dad.
STAR BRIGHT, STAR LIGHT, THE FIRST STAR I SEE TONIGHT, I WISH I MAY, I WISH I MIGHT, HAVE THE WISH I WISH TONIGHT…And this evening while Nicholas walked onto the patio down the hall from his hospital room, we spotted the first star tonight. It was in the western sky while it was still twilight. It was a picture perfect sky with feather-like clouds seemingly suspended in air and a warm, gentle breeze providing comfort as the evening began to turn dark. And you know the “wishes” he has tonight and everyday since the leukemia diagnosis.
SHARING LOVE AND LIFE. Last night, mom & dad met a couple whose 15-month son was just diagnosed with leukemia. As hard as this journey is for mom & dad, we have been so happy to share love and life with this couple and their child. God knows what we all are thinking and praying about for all these beautiful children of His and we cry out for His love to deliver them all—to be whole, perfect, and pure!
TOMORROW (SATURDAY) MARKS 365 DAYS, one year since Nicholas’ leukemia diagnosis. And we must remember that there is nothing that has power over Nicholas aside from God. It is His omnipotence, omniscience, and omnipresence in operation that rules Nicholas’ life. So we pray, pray, pray for this truth and all the glory to God as He delivers Nicholas perfect and pure. This miracle is the light of God and we trust Him completely! And we must say again, EVERYTHING is so HARD to manage and manage through EVERYDAY...
November 18, 2005 Blood Counts:
WBC: 0.3
HGB: 9.4
PLTs: 57
ANC: NA
Thursday, November 17, 2005 11:59 PM CST
THURSDAY:
1) The SPECIFIC TYPE OF GRAM NEGATIVE ROD BACTERIA IS E. Coli. It is sensitive to the antibiotics being administered—praise God—so our fear that it would be a type that is not easily treatable has been allayed. Note: We normally refer to this overall journey as a roller coaster because things and situations have gone up and down (good path, bad path or like good results, bad results). And we sometimes mention that it is a slippery road because seemingly the situation is on the right path, and then suddenly slip off the path. Whatever we—you—call it, it is a “hard” road to travel and we are thankful that we are able to travel it with God providing us with blessings from many different directions. Note: E. Coli is something we all have in our bodies; however, Nicholas' blood counts being so low and ability to fight infection compromised enabled the bacteria to become "positive."
2) Remember there was a little blood in Nicholas’ stool yesterday morning, and remember his Platelets were very low so a Platelets transfusion was performed. CULTURES FROM THAT STOOL AND SINCE HAVE, THANKFULLY, COME BACK NEGATIVE.
3) The ENTIRE-BODY ITCHINESS HAS BEEN EASED SIGNIFICANTLY. The doctors, including dermatologist, have been following up regularly to determine if there is any other intervention necessary. However, the RASH ON NICHOLAS’ LEGS IS MORE PRONOUNCED and we will follow up with the doctors tomorrow. Note: Although results from the skin biopsy a few weeks ago came back indicating that rash, then, was not GVHD, his doctors today stated that what is now present could be GVHD. So, we pray that it is not GVHD and we pray that if it is it provides the GVL effect discussed in the journals when Nicholas relapsed. AND we continually pray, knowing that Nicholas is God’s creation so nothing can alter His perfect work.
4) Blood counts and chemical panel levels will be determined daily to help keep the doctors ahead of any issues to be managed (including the function of Nicholas’ organs).
5) The earliest Nicholas is planned to go home will be this coming Tuesday. They are waiting for more of the daily blood cultures to come back negative, and to ensure that Nicholas is more stable. If we do go home next Tuesday, we will need to administer some of the antibiotics at home. This is okay with us!
6) MINI CELEBRATION: Nicholas HAS NOW LEARNED TO TAKE ALL OF HIS ORAL MEDICINES VIA PILLS instead of the liquids. This is a big accomplishment and we are so, so proud of Nicholas. This makes administering ten medicines each day so, so much easier for Nicholas because of the taste when taking liquids, for mom to prepare the medicines, and for mom & dad to administer. Well, actually, we are proud of Nicholas either way—he has endured so, so much since November 19, 2004!
7) LOTS OF FUN AND LOVE TODAY:
Nicholas learned a couple MAGIC TRICKS from one of the nurses yesterday, and today he performed one of the tricks (making a ball disappear) throughout the day to the nurses and other staff coming in to see him. And before he makes it re-appear, I wish you could see his hands slowly waving over the container and hear his voice softly say “just the right words” for the ball to re-appear. NICHOLAS ACTUALLY BROUGHT WARM SMILES TO THEIR FACES. They were entertained, however, more importantly they were so happy to see Nicholas having fun.
And two representatives from “BOOKS-A-LIVE,” with its PC interactive stories and games visited Nicholas and he really had fun. When they came into his room, he SAT UP and said, “Yeah!” and started to clap. THIS BROUGHT A SMILETO NICHOLAS’ FACE.
This evening Nicholas was free from being hooked up to an IV pole for about one hour. We packed some snacks and went up onto the roof (remember, it is like a garden with trees, bushes, flowers, and nice views from up high of the surrounding area). We walked, sat, talked, prayed, and WATCHED THE SUNSET. Then, Nicholas got quiet and said, “I just want some time to think by myself because I am not happy right now. Seeing the sunset makes me think about the sunsets we watched before the leukemia—I really miss being able to do whatever we want to, whenever we want to.”
After our trip to the roof, we went to the hospital gift shop and Nicholas shopped for a couple gifts—for himself and he deserved to do just that. Before going back to his room, he spent some time at the nurses’ station playing, coloring, talking, and getting a ride on a chair by mom. SIMPLE THINGS AND MADE-UP THINGS BRING GENUINE SMILES TO EVERYONE!
VERY NICE EVENING cuddled up with mom, eating popcorn and watching a movie. And playing, playing, playing with different people from the medical team and with mom & dad helped make the evening okay.
When one doctor came into the room this evening to examine Nicholas, she was touching and pressing on his stomach. Nicholas said, “This is one of my favorite times with doctors, this feels like a massage.”
Right now, we have classic music (Mozart, Beethoven, Bach, etc.) playing in the background like we always have done, Nicholas seems to be sleeping well, and we know that our Father, God, has Nicholas in His hands as He always does.
And all of this stuff is still so very, very hard. It is so very, very scary and we know that God loves us and that fuels us to love and trust in Him.
November 17, 2005 Blood Counts:
WBC: 0.3
HGB: 8.1
PLTs: 63
ANC: NA
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Wednesday, November 16, 2005 11:59 PM CST
SNAPSHOT UPDATES:
1) Still waiting for the specific Gram Negative Rod bacteria to be identified. Remember, Monday morning Nicholas spiked a fever that caused him to be hospitalized; and early that evening the fever went away. Today (Wednesday), early afternoon he spiked a fever and one hour later—thankfully—the fever had gone away.
2) Nicholas’ Platelets dropped to 11, so this afternoon he had a Platelets transfusion. The Gram Negative Rod bacteria can negatively impact blood counts. And with the 5-day Clofarabine treatment that ended on November 5, normal blood counts may not be present until November 25 because it takes 14-20 days to do so after Clofarabine.
3) This morning there was some blood in Nicholas’ stool (remember, very low Platelets this morning) and his heart rate was elevated throughout the day. Around 2:00 this afternoon his heart rate was around 175 prompting a “mini scare” to mom & dad as several doctors rushed into the room to examine Nicholas. He did not have any complaints of pain, his stomach felt fine, AND he looked good. In fact, aside from seeing the high heart rate on the monitor, you would not expect anything negative going on within Nicholas’ body—again, we thank God for shielding Nicholas. With the blood in his stool earlier and the high heart rates, the doctors wanted to assess for any internal bleeding. Thankfully, Nicholas was doing fine and no internal bleeding determined.
4) Nicholas' upper lip is healing great—there is no sign of infection and tonight it looks just about normal. Yeah!
5) Nicholas’ entire body has been severely itchy although he has been receiving Benadryl and Vistaril around the clock every six hours, which means one of the medicines was being administered every 3 hours. This evening in place of Benadryl we applied Triamcinolone topical cream. On stand by to administer is Nubain if there is continued itching. Tonight the itching was less bothersome and we are so glad because for about 18 hours he was constantly itching, everywhere.
6) Well, WE WILL BE IN THE HOSPITAL FOR A WHILE. Going home is targeted for next Tuesday—we hope to be out of the hospital for Thanksgiving. Last year, with the diagnosis being on November 19, we were in the hospital for Thanksgiving. It was okay (made special because of the love of family and friends that were there for us in some amazing ways). We are sure you can imagine the “Thanks”-giving we will have “just being home.” Nicholas understands that the minimum stay in the hospital for a fever is 48 hours so he was counting on going home today. Understandably, he was not happy hearing from us that we will be here through the upcoming weekend. We talked, prayed, and simply expressed our love and determination to do whatever he would like done to make the stay away from home better and better.
SPECIAL THANKS
Everyone, thank you! Thank you for being with us in your way…thoughts, prayers, guestbook entries, and a variety of personal actions that have been amazing and helpful to Nicholas, mom & dad, and our other boys. As we approach November 19 marking one year since Nicholas’ diagnosis, you can imagine that our lives have more than changed. Our lives have transformed into a mode of love x love x love…that has taken us away from so many things that we love and as a result unable to focus on or pay attention to as we try to focus and attend to Nicholas, our beautiful little boy. Again, many of you have stepped in and helped us manage our lives AND we are forever grateful. Thank you for your continued love that you express and deliver—we need it!
And tonight Nicholas seems to be having a peaceful sleep—thank You Lord!
November 16, 2005 Blood Counts:
WBC: 0.3
HGB: 8.3
PLTs: 11 (Platelets transfusion today based on this count)
ANC: NA
Tuesday, November 15, 2005 10:13 PM CST
NO FEVER, LOTS OF SMILES, LOTS OF THANKS, AND LOTS OF WORRIES “NAVIGATING” THROUGH THE PROCESS
Thankfully, Nicholas has been without fever since yesterday afternoon and throughout the day he had smiles, some laughter, and was in pretty good spirits most of the day. Thankfully, only once did Nicholas cry out about wanting to be home. He works so hard to have a positive demeanor—and if he does not have a positive demeanor we believe it is understandable.
NO FEVER: Although Nicholas was positive for the Gram Negative Rod bacteria and we are waiting for the cultures to further grow out to determine the type, it appears the antibiotics administered are doing their job because Nicholas is remaining free from having a fever. And he is in good spirits, lively engaging with the medical staff—smiling and having fun with them. One nurse came in this afternoon with a box of magic tricks. Nicholas quickly learned a couple of them and was performing for people who came in over the following hour. Making a ball disappear from a lantern-like holder and then re-appearing was his favorite trick to perform.
The doctors and nurses are so pleased that it appears that the right antibiotic was administered to combat the bacteria. Through God, the bacteria cannot have any power over Nicholas.
LOTS OF THANKS: A dermatologist examined Nicholas’ LIP today. The area in question was soft, not hard which is a good thing. He determined that is not linked to any fungus—that was an initial concern—and that it was probably some type of trauma that caused the swelling and the bruise/scab like appearance right in the middle of the upper lip. The swelling continues to come down and it is no longer sore when it is touched. (Nicholas or mom & dad do not know recall any trauma to his lip.)
Nicholas ATE really well throughout the day and night. He enjoyed a Calvin and Hobbes Collection of comics (BOOK) mom read to him this evening, and watching Cinderella. His leg muscles are recovering and he is walking more with greater ease.
AND LOTS OF WORRIES
While we are waiting for the specific type of Gram Negative Rod bacteria to be determined (may be determined by tomorrow night), we are afraid because some types are not easily treatable—we PRAY that it will be treatable. And our fears are calmed knowing that God loves Nicholas and Nicholas loves God. And through God we trust Him to heal Nicholas, His perfect creation!
We are thankful Nicholas is winning the fever battle. And while we are concerned about any bacteria or virus, there are other concerns like A) Having his blood counts continue to climb toward the target ranges, B) An upcoming bone marrow aspirate once his counts recover to—we PRAY for God’s touch—reveal that Nicholas is cancer free (in remission), C) Remaining in remission, and D) A successful second BMT (perhaps mom or dad will be the donor so there is more of a graft versus leukemia effect toward ensuring any remaining leukemia is destroyed, as previously stated). We believe and trust that God will heal His perfect creation, Nicholas, and that His omnipotence, omniscience, and omnipresence will deliver Nicholas free from any disease or side effects.
AT THIS POINT WE ARE NOT SURE WHEN WE WILL BE GOING HOME…as blood cultures are still being checked because of yesterday’s fever, and Nicholas’ blood counts need to recover. It may be by the beginning of next week. We PRAY that we are able to get Nicholas home in just a couple days—he deserves to be home.
November 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Monday, November 14, 2005 8:58 AM CST
*UPDATE#3—ONE RESULT OF CULTURES JUST IN (11:10 PM)*
Results of one of the cultures were just delivered. It reveals positive for a Gram Negative Rod bacteria. This is the second time he was positive for this bacteria; the first time was October 12, 2005. It will take a few days for the specific type of Gram Negative Rod bacteria to be determined enabling assessment of the specific type of antibiotic to be administered. In addition to the antibiotics stated below, Amikacin is being added tonight.
So we will not be going home in 48 hours; we learn more over the next couple of days.
Please, please continue PRAYING with us for the manifestation of Love and Spirit to reveal what is true through God—that Nicholas is God’s perfect child and no disease or anything contrary to God can operate in Nicholas or impact Nicholas.
*UPDATE #2—ADMITTED INTO THE HOSPITAL THIS AFTERNOON (11:00 PM)*
The process when a BMT patient contracts a fever includes a minimum 48-hour hospital stay, two specific antibiotics that have a broad range of infection coverage, and blood cultures drawn to help identify the cause of the fever for specific action to be taken. Because mom & dad are aware of this process, we were pretty much already prepared/packed this morning after discovering that Nicholas had a fever. (After Nicholas went to the bathroom this morning around 6:00, when putting him into bed he felt warm so we checked his temperature.)
ANTIBIOTICS: The Ceftaz and Vancomycin antibiotics were administered at 10:30 and 11:30, respectively. They will be administered every 8 hours. Initial results of the blood cultures should be available tomorrow around noon. Thankfully, this afternoon the fever broke.
LIP: Also, late last night we noticed that Nicholas’ upper lip had a red mark and it was painful to him. This morning it was swollen and appeared to have a bruise right in the middle. This afternoon the swelling had significantly gone down; the doctors are not sure what to make of the lip at this time.
We are so comforted by the way Nicholas’ doctors engage with him and us. His BMT doctor is the attending doctor on the floor this week and she is looking into all the things going on. Tomorrow morning she will share her assessment with us including what she feels would be best for Nicholas. We PRAY for God’s guidance of her mind.
Nicholas had a great appetite so he and mom created a list of items dad picked up from the store this evening (in addition and sometimes in place of his meals in the hospital). And he no longer has to have his lunchmeat cooked/microwaved—so he was happy to eat a few slices of salami from the package.
ITCHY: Nicholas has been itchy all over his body the last 7-10 days for some unknown reason although no rash is visible. The doctors are “keeping an eye on it.”
REMISSION STATUS: After the blood counts recover (start to come up toward the target ranges) another bone marrow aspirate will be performed to assess the affect of the Clofarabine toward getting Nicholas into remission. We PRAY the Clofarabine has done its job, asking our Lord to shield and heal our baby!
WHAT NICHOLAS SAID TODAY
After Nicholas was told that he could have salami without it being cooked/microwaved anymore, following is what he said to mom. “I am so lucky; I still have my Broviac (catheter, central line in his chest) in and I already get to go to restaurants, and I do not need to have salami cooked before I can eat it. Other kids with bone marrow transplants have to have their Broviac out first.” While this “bone marrow and leukemia stuff” is simply devastating and awful to navigate, there are blessings along the way and we are thankful. We praise God for his loving touch.
November 14, 2005 Blood Counts:
WBC: 0.3
HGB: 12.1
PLTs: 30
ANC: NA, because some information is not available when the WBC is below 0.6
*QUICK EARLY MORNING UPDATE*
NICHOLAS HAS A FEVER
We are on our way to Stanford-LPCH. PLEASE PRAY, AND PRAY VERY HARD for Nicholas.
___________________________
Sunday, November 13, 2005 11:58 PM CST
PRAYING
It is so very hard hearing Nicholas crying, praying, and asking why, why, why…he cannot do many things that he used to do. AND we continue to talk and pray with Nicholas—AND we certainly know and give thanks for the many blessing that we have talked about throughout the journals. So while Nicholas cries out, he and mom & dad cry out thanks as well. It's still just very hard!
Did you see Friday’s journal and the “I Wonder Why” portion? Are you a child, parent, sister, brother, grandparent, aunt/uncle, cousin, friend…of someone who is battling “anything?” Whether you are or not, “I Wonder Why” probably flows easily into your thoughts and expressions. From listening, researching, and reading, we understand the process (including the number of years) toward declaring a person is cured of leukemia. We understand the pitfalls toward first reaching remission. We understand, we understand, we understand, AND we too still “wonder why”…
AND through faith the “I Wonder Why” becomes a side note as we focus and concentrate on God’s Love. Through prayer we ask for the work He wants us to do and, yes, we ask for understanding. While Nicholas asks mom & dad why…, we talk with Nicholas letting him know that we are praying to understand many of his questions about why… AND we lean completely on our Father, God, for his Love and Spirit. We lean on Him for His direction, His work, His healing. And we give thanks because we know that Nicholas and mom & dad are blessed.
AND OTHER KIDS…we get on our hands and knees and PRAY. These are God’s perfect children as well AND we pray for their perfect healing, now. Children like Ben, Dillon, Jacob, Matthew, Kaeli, KJ, Sriya…
PLAYING AND GIVING THANKS FOR A MILESTONE KJ REACHED
Today was the 180th day since KJ’s non-cancer BMT that is a very significant milestone. KJ came over to our home for the day. Before dinner, Nicholas prayed over our meal. Nicholas’ prayer was thanking God for KJ’s 180th day, thanking God KJ’s Broviac has been removed, and thanking God for making KJ better.
Please click on VIEW PHOTOS to see KJ and Nicholas playing the board game, Candy Land.
NOTE: If you have not seen Saturday’s journal and the portion about the medical aspect of things right now, please click on JOURNAL HISTORY for a snapshot of what is upcoming.
November 13, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, November 12, 2005 11:59 PM CST
“LIVING,” LOVING, LEARNING, AND PRAYING
Through out the day and night, we prayed together. And through out the day and night we lived, had fun, shared laughter, and helped Nicholas during times of tears and sorrow—while praying for help ourselves and to help Nicholas better during his times of tears and sorrow.
DINNER OUT IS GREAT, AND IT IS NERVE RACKING
Nicholas’ grandma spent the evening and with us and is staying overnight. Tonight, dinner out for Japanese food—everything cooked, no sushi, for us (with Nicholas’ mask only as a back up if needed). Nicholas had chicken teriyaki, shrimp tempura, shrimp rolls, steamed rice, and a Japanese soft drink. He was so very happy to be sitting in a restaurant having dinner selections he loves to eat. While mom & dad are also happy to be dining out with Nicholas, it is also nerve racking ensuring that the restaurant is not too crowded, determining what he can have, ensuring his food is cooked just right and fresh, and that all precautions will be followed.
Tonight we were dining out right when the restaurant was opening to avoid a crowd. The Blue Gingko is a small restaurant and this evening right at opening it was too crowded so we did not feel comfortable eating there tonight. So, we went down the street to another one of our favorite Japanese restaurants, Kane Sushi, which is larger and was just opening for the evening. We know the owners of both so communicating about our situation is not difficult and they are very accommodating (Kane Sushi had already heard about the situation).
Trying to go at non-peak times or when the weather allows us to eat outside is best thing for Nicholas to guard against infection. AND, doing so is nerve racking—tonight when we heard a cough that came from across the restaurant, dad looked at mom so we could assess Nicholas’ safety together. With this being our first time since the BMT dining in at a restaurant, no question we were overly cautious. AND tonight although we were following guidelines for eating out, right when Nicholas was kind of full, dad scooped him up and waited in the car for mom and grandma.
Mom & dad, well Nicholas too, could be considered “old hand” diners, however, tonight it seemed like we were novice in some ways. Well, in terms of all that has been going on since the BMT, it was kind of our first time so you can imagine our questions and precautions. And in addition to the precautions provided to us, we learned some things toward ensuring the right environment.
WHY WE ARE NOT TALKING ABOUT THE MEDICAL ASPECT OF THINGS RIGHT NOW
The next medical step is a conversation with our doctors this coming Wednesday to discuss and map out the next stages of Nicholas’ journey. We will be identifying when the next bone marrow aspirate should take place (when Nicholas blood counts are up closer to normal) to determine status of the marrow. The discussion will include determining another one or two courses of the 5-day Clofarabine treatment Nicholas came off of last Saturday. And the discussion will be on another BMT, including what hospital and when.
So, Nicholas is recovering from the recent 5-day Clofarabine treatment and being in remission is the goal before another BMT can take place. AND we know, we really know, that Nicholas can already be healed/cured because of God’s omnipotence, omniscience, and omnipresence. Healed/cured because of His Word (as we have been talking about more in the journals recently).
LIVING, LOVING, LEARNING, AND PRAYING
The heading above is our focus, in spite of Nicholas’ situation. Through God there is nothing that can stop our living, loving, and learning! And we PRAY to grow in all the right ways including growing together, “forever.”
November 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, November 11, 2005 11:59 PM CST
SEAFOOD FEAST
Knowing that Nicholas likes shrimp and crab, family friend—Soha, and her two girls—Neda and Hana, came over and Soha prepared and cooked a great seafood dish. Nicholas really enjoyed eating fresh shrimp and crab and the tasty sauce. (Please click on View Photos)
EXERCISE AND PLAYING
Nicholas spent time exercising his legs, walking on his own, painting, and playing today. Tomorrow, if it is not raining and not too cold, we plan to take Nicholas to a park (his request).
A SCHOOL PROJECT BY HANA TO SHARE
Hana is a third grader and her sister, Neda, was in the same pre-school class with Nicholas. Recently, Hana shared a project with us that she developed about Nicholas. She submitted it to a school-wide program and following is the written content of the project titled, I Wonder Why.
“This is our friend Nicholas Colby Gilbert. Nicholas is a 5 year old. He went to school with my sister, Neda. He is so nice. Nicholas has three older brothers, Chris, Tim, and Matt.
“Nikko has Leukemia. Leukemia is a bad kind of cancer also known as cancer of the blood. Sometimes, I wonder why he has to suffer so much. A lot of kids have life-threatening diseases and others do not. Why do some kids have diseases and other don’t...I don’t know.
“Last week, we walked in the Light the Night walk. This was a fundraiser organized by the Leukemia society. They need to get money to help doctors find a cure for these kinds of terrible diseases. More than a thousand people showed up for that walk. We walked two miles and raised a lot of money. It was neat. But, at the same time, I wonder why they have not found a cure yet…a lot of people, kids and adults get Leukemia and other cancers, why can’t anyone find a cure yet…I wonder why…
“We go to visit Nikko as much as we can, and as much as he can. We like visiting him. When he is in the hospital, he is in a room that is “clean.” There are filters everywhere to clean all the germs. We have to go through double doors to get to his room. And, of course, we have to wash our hands very well. Whenever we go to see him we always see a lot of kids who are really sick…that’s sad…and that makes me wonder…why…
“A lot of times I wonder about Nicholas and other sick people, I think about life, who gets sick and who doesn’t…why do people get sick…why they have to suffer so much…why do their family and friends have to go through all of this…it’s sad…I really wonder…why…”
THE SCHOOL PROJECT AND WHAT THIS JOURNEY MEANS TO OTHERS
Hana’s project earned first place in her entire school. She called Nicholas and told him, “Congratulations, we won first price!” And following is the content of a note one judge gave Hana: “This is a tremendous essay, very well written. Nicholas has a very precious friend named Hana. I hope you become a doctor and find cures for these diseases. Very wonderful.”
As you probably read in the last several journals, Nicholas is having a hard time dealing with “all this leukemia and bone marrow stuff” in terms of wanting to do the things he would normally being doing if this leukemia journey never happened. As we talk and pray with Nicholas, we start by acknowledging that we hear him and are continually trying to understand what we do not. We pray for God to help us understand and to let Him know that we are glad to be continually serving Him AND asking for His guidance. We always stop and give thanks for what Nicholas is able to do AND what he does have in his life. What he has is our family, friends, churches of many denominations, and new acquaintances from EVERYWHERE caring, supporting, loving, and praying for the truth…
The truth…confessing that the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. That God’s Word is medication and life to his flesh, for the law of the Spirit of life operates in Nicholas. That we have on the whole armor of God and our shield of faith protects Nicholas from all the fiery darts of anything wicked. The truth that Jesus is the High Priest of our confession; and we hold fast to our confession of faith in God’s Word. We stand immovable and fixed in full assurance that Nicholas has health and healing both spiritually and physically right now, in the Name of Jesus.
So this journey is one that, seemingly, is bringing us all together caring, supporting, loving, and praying for the truth…that Nicholas’ has been created in God’s likeness and image so Nicholas has Love and Spirit on board directing his life.
November 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Thursday, November 10, 2005 11:59 PM CST
RESTAURANTS, MOVIE THEATERS, AND STORES
Nicholas reached a HUGE MILESTONE today, he can now go to restaurants, movie theaters, and even stores—during non-busy times and we need to ensure the food is cooked fresh (not prepared and sitting out) and at theaters and stores we need to ensure what Nicholas touches is disinfected.
Tonight, Nicholas chose The Blue Ginko (Japanese restaurant) and McDonalds. He wanted to go to both, however, we took him to McDonalds tonight and we will go to The Blue Ginko tomorrow.
AND his first movie theater visit since the diagnosis may be just Nicholas and a very special date without mom & dad (while mom & dad will be near by enjoying a date of their own).
THE REST OF THE JOURNEY
This morning Nicholas received an IVIG treatment (immune booster) and this afternoon he received a Platelets transfusion—his Platelets were down to 9. The medical staff is very, very pleased at how well Nicholas has tolerated last week’s chemotherapy (that was very, very scary to mom & dad). And as we wrote in a journal last week, we know and understand more and more each day the realization that God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be placed into Nicholas’ body that can have power over God—nothing.
Next Wednesday conversations with two of Nicholas’ doctors will take place to map out the next stages of Nicholas’ journey. We are so grateful to know that God is our Sheppard and He will lead us!
SONG IN YESTERDAY’S JOURNAL
Following is the link, well the address, if you would like to hear the music to the song (Hold On) that was stated in yesterday’s journal. For me to get it to play, I copied and pasted the address onto a Word document and then hit the return key so the “http://www.inspiringthots.net/movie/hold-on.php” becomes a link that you can click onto. Then it should play for you.
November 10, 2005 Blood Counts:
WBC: 0.1
HGB: 11.
PLTs: 9
ANC: NA
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Wednesday, November 9, 2005 10:52 PM CST
Day 355 since Nicholas’ original leukemia diagnosis
Day plus215 since the BMT
Day 59 of the relapse
NICHOLAS’ HEART AND SOUL FUELED A PERSONAL CHALLENGE TODAY
Running is something that kids and many of us like to do at times. Running is something that many of us take for granted. While Nicholas has been doing some leg exercises and walking more and more to build up his leg muscles since being immobile for about two weeks (a couple of weeks ago), walking un-aided is still a challenge.
And through prayer, Nicholas continues to ask God to be able to run. And Nicholas said he wanted to try running. While we were at his side, Nicholas said he was going to do it; he tried to run and fell. He practiced walking some more through out the day, and this evening with our arms underneath his, Nicholas asked to practice running. He practiced and tried running again—his trust in God and his heart and soul fueled his desire and his actions. Nicholas did not run un-aided today, however, he tried, practiced, tried, and has the desire and actions to “keep on.” He “ran” better tonight than he did this morning!
AND Nicholas’ heart and soul works, prays, and wants so badly for God’s love to reveal that he is pure and God’s perfect creation free from any disease.
NICHOLAS’ JOURNEY, OUR JOURNEY
Hold on, Hope, Trust, Love, Family, Friends, Yourself, Dreams, Room for Others, Contribute. These things are at the core of Nicholas, mom, and dad’s life. And God is the source for it all.
Following is a song by an unknown author that was recently shared with us. We are sharing it with you as it gives you more insight to Nicholas, mom, and dad.
Hold On
Hold on
Hold on tightly to what is truly important in life.
Hold on to faith, it is the source of believing that all things are possible.
It is the fiber and strength of a confident soul.
Hope
Hold on to hope,
It banishes doubt and enables attitudes to be positive and cheerful.
Trust
Hold on to trust;
It is at the core of fruitful relationships that are secure and content.
Love
Hold on to love;
It is life’s greatest gift of all, for it shares, cares, and gives meaning to life.
Family
Hold on to family;
They are your roots and the beginnings that you grew from;
They are the vine that has grown through time to nourish you, help you on your way, and always remain close by
Friends
Hold on to friends;
They are the most important people in your life, and they make the world a better place.
Yourself
Hold on to all that you are and all that you have learned,
For these things are what makes you unique.
Don’t ignore what you feel and what you believe is right and important;
Your heart has a way of speaking louder than your mind.
Dreams
Hold on to your dreams;
Achieve them diligently and honestly.
Never take the easy way or surrender to deceit.
Room for Others
Remember others on your way and take time to care for their needs.
Enjoy the beauty around you.
Have the courage to see things differently and clearly.
Contribute
Make the world a better place one day at a time.
And don’t let go of the important things that give meaning to your life.
Hold on to these things!”
Thanks for “holding on” with Nicholas, mom & dad, and our other three boys. Please hold on to God and PRAY with us as we hold on to God first, and through God hold on to hope, trust, love, family, friends, ourselves, dreams, room for others, and as we hold on to contributing.
Note: Follow up appointment tomorrow at LPCH.
November 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, November 8, 2005 11:59 PM CST
PRETTY LIGHTS
This evening we drove up Fish Ranch Road by the Caldecott Tunnel and the view was so pretty, as always. We could see lights glittering from the Golden Gate Bridge, Bay Bridge, San Mateo-Hayward Bridge, and from all the lights that make up the surrounding cities. And what a special treat to learn from the guest book about the Berkeley Hills web cam (thank you Char)!
TOUGH JOURNEY, TOUGHER FAITH
Reflecting on the last couple of journals, we are sure that you can feel that this journey has been getting tougher emotionally as well as physically. And our faith, our passion for trusting God’s words, and our love for our Father—God—is absolutely tougher although very, very hard. Questions and doubts have flirted with our thoughts. We have wondered why Nicholas has not been healed, made whole, and why the realization of anything contrary to purity, perfection have not been cast aside. And, our faith becomes stronger; continually we remain faithful, loving, and praying to adhere to His word; and our love for God is not weakened but strengthen because we believe in His word!
If God’s plan is for us to demonstrate love through this journey, as tough as it gets we will demonstrate love. Although for Nicholas we ache so much hearing his prayers and seeing him work so hard loving and remaining loving, we know that Nicholas is completely loved by God so His love will deliver Nicholas un-harmed and free from disease because it cannot exist in what God created. And, we do wonder why… And then we pray to further understand, and pray for His help to continually help us to understand. We will obey His word, trusting in His word, and yes, we do believe that He has an absolutely beautiful plan for us—as tough as this road is it will be a faint memory and any work we are doing for God is the right work to be doing.
THURSDAY APPOINTMENT AT LPCH
This Thursday Nicholas will be at LPCH—clinic appointment for an immune booster and discussion on next steps. And Nicholas said today, “Father, I know I am healed…”
November 8, 2005 Blood Counts:
WBC: 0.1
HGB: 12.4
PLTs: 37
ANC: NA (Neutropenia: Decrease below normal in the concentration of Neutrophils, a type of white blood cell that is the main cell that combats infection. Just coming off of last week’s chemotherapy treatment has this effect)
___________________________
Monday, November 7, 2005 11:59 PM CST
NICHOLAS' WORDS TO MOM & DAD, AND HIS PRAYER
“Daddy, I know God loves me and he is taking care of me. But daddy, I want the healing to be real, right now, please. Will He do it?” This was one of many conversations Nicholas shared with mom & dad through out the day. Literally, through out the day Nicholas would stop and say, “Will you read some more of the Bible to me?” We read from The Children’s Bible and the Bible.
And we had several prayers that we prayed aloud. Early evening we prayed while Nicholas was in dad’s arms, looking out into the sky, through the clouds sensing the moon and stars that were there even though we could not see them tonight because of the clouds. As we prayed, walked, looking up through a large picture window, swaying softly to the words of the prayer, Nicholas fell asleep. He fell asleep praying to our Father.
Nicholas asked to walk without anyone holding his hands, run without any fear of falling, for his skin to stop itching, for his finger to feel “normal,” for his eyes to not hurt, for his Broviac (central line in his chest for blood draws and to administer medicine without having to be poked every time these things are performed) to be removed, for no more blood draws, for no more hospital visits, to go to school, to go to restaurants, to go to the movie theater when ever we want, to eat what others eat, to be with his friends whenever he wants, and many more things. While it is quite a list, Nicholas’ love for God, his family, friends, and those he meets continues to be amazing. Amazing even when he is not feeling too well.
It is quite a list, however, no list is too long for God and these things he so deserves as God's perfect child that He created. Nicholas continues to love and do what he has to do. He prays asking God for these things, while first and always loving God, his family, his friends, and people that he meets. We PRAY, PRAY, PRAY for the manifestation of God’s love throughout Nicholas’ body making “real” the purity of His word revealing Nicholas’ bone marrow/blood to be pure—free from disease.
AND while praying, Nicholas asked for others to feel better, he was praying for others in the same breath praying to be healed.
While we are PRAYING, asking for these things, we are doing so from the purity of Nicholas' words to our God whom he loves and "trusts" so much. To his Father who said for these things I will do for those who love and serve me. Nicholas does these things and has done them not asking for anything in return, until now. We are asking for these things in return for Nicholas, for Nicholas IS pure and serves God so amazingly well. We PRAY that God will do it because His words are pure and He said will not return to Him void.
NO DRIVE TO SEE LIGHTS GLITTERING TONIGHT
Praying throughout the day was okay with us. We are continually in a learning and discovery mode and it fulfills us—so other than a couple of friends that came to visit, fun and laughter doing various things, praying was the make up of the day. And it was good. With the clouds filling the sky, we postponed our drive this evening to the top of Fish Ranch Road to view lights glittering across the Bay Area.
Through mom & dad's eyes, we get plenty of glittering lights as we watch and see Nicholas just be Nicholas. And for Nicholas, we will find ways for him to enjoy the glitter of lights and life.
November 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, November 7, 2005 11:59 PM CST
NICHOLAS WORDS TO MOM & DAD, AND HIS PRAYER
“Daddy, I know God loves me and he is taking care of me. But daddy, I want the healing to be real, right now. Will He do it?” This was one of many conversations Nicholas shared with mom & dad through out the day. Literally, through out the day Nicholas would stop and say, “Will you read some more of the bible to me?” We read from The Children’s Bible and the Bible.
And we had several prayers that we prayed aloud. Early evening we prayed while Nicholas was in dad’s arms, looking out into the sky, through the clouds sensing the moon and stars that were there, even though we could not see them tonight because of the clouds. As we prayed, walked, looking up through a large picture window, swaying softly to the words of the prayer, Nicholas fell asleep. He fell asleep praying to our Father.
Nicholas asked to walk without anyone holding his hands, run without any fear of falling, for his skin to stop itching, for his finger to feel “normal,” for his eyes to not hurt, for his Broviac (central line in his chest for blood draws and to administer medicine without having to be poked every time these things are performed), for no more blood draws, for no more hospital visits, to go to restaurants, to eat what others eat, to go to school, to be with his friends whenever he wants, and so many more things. While it is quite a list, Nicholas’ love for God, his family, friends, and those he meets continues to be amazing. Amazing even when he is not feeling to well. It is quite a list, however, no list is too long for God and these things he so deserves. He continues to love and do what he has to do. We PRAY, PRAY, PRAY for the manifestation of God’s love throughout Nicholas’ body making “real” the purity of His word revealing Nicholas’ blood to be pure—free from disease.
NO DRIVE TO SEE LIGHTS GLITTERING TONIGHT
Praying throughout the day was okay with us. We were in a learning and discovery mode and it fulfilled us—so other than a couple of friends that came to visit, praying was the make up of the day. And with the clouds filling the sky, we postponed our drive this evening to the top of Fish Ranch Road to view lights glittering across the Bay Area.
November 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, November 6, 2005 11:54 PM CST
CHILDREN’S BIBLE
A “Children’s Bible” is what Nicholas couldn’t put down today. This particular bible has been with us on every hospital stay; however, throughout the morning and night Nicholas had mom & dad read it to him. Other times he was thumbing through it trying to read some of the words and interpreting from the pictures. He tells us, “I know God is always with me and He will always comfort me, but sometimes I just don’t understand all of this stuff.”
Nicholas continues to be so patient, so loving, so trusting, and so needing mom & dad, his family, and God. We use these moments to also pray with Nicholas, asking for help to understand all that he is going through, asking for help to be better parents to better help him go through this, and thanking God for loving us all. We belief and trust in Him and His words, “Be still and know that I am God”, and focus on that truth and His words to know the truth about Nicholas. So in the name of Jesus, Nicholas is healed and we will all be able to rejoice in the Lord seeing his marvelous work through Nicholas.
QUIET RELAXING DAY
Nicholas, and mom & dad, had a rather quiet and relaxing day. Soaking up being home feels so good. Several of Nicholas’ friends stopped by to visit although he was tired most of the day. This evening his nanny (Kimmy) arrived for a visit and by this time he was rested and had fun playing, reading, and just laughing.
TOMORROW
We will let Nicholas create the day he wants to have tomorrow (Monday). One of the things he wants to do in the evening is drive up Fish Ranch Road to the crest if it is a clear evening—he wants to see all the lights and stars from up high. The area provides a stunning, glittery view. During the day, well, like you, mom & dad will find out tomorrow.
NOTE: Please click on View Photos to see Nicholas giving mom a "facial" and his concentration while doing mom's make-up.
November 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, November 5, 2005 10:30 PM CST
HOME!
Nicholas is home; we arrived back in Lafayette around 3:00 this afternoon. Our morning in the hospital was, well, okay. It was nice for dad to see Nicholas and mom sleeping well and so peacefully. (Nicholas did not sleep with dad last night so we didn’t try to trick the nurses when mom would have been in the hospital bed by herself). I guess the anticipation of going home today provided soothing thoughts versus anxious thoughts—and God’s presence set the tone.
Although this stay was just 5 nights, it was a very nice homecoming—it almost seems like the seasons changed in just 6 days. The changing colors of leaves were drastically noticeable, the scent in the air, and just being outdoors in the crisp air was so refreshing. Nicholas’ older brothers did a good job managing daily responsibilities around the house; and the house was noticeably different (in just 6 days): the aroma of apple scented candles and their glow, along with the overall presence of fall created a warm and cozy homecoming.
NICHOLAS
Very early this morning Nicholas received a Platelets transfusion and then a Red Blood Cells (Hemoglobin) transfusion. Over the last several days Nicholas has progressively displayed his strength, energy, and joy. And Nicholas, mom, & dad’s prayers along with understanding God’s omnipotence, fuel our prayers to be closer and closer to Him. For in Him we find the only source of comfort and we trust in Him for the truth—Nicholas being created in His image and likeness and the truth that God’s work is perfect, free from disease and/or error.
Nicholas has also had several moments of (as he said it) “obsessing over things.” He gets very emotional over a few things like being very concerned about a finger that was sore months ago and wanting it to feel as perfect as the other one. (It looks fine although there is a tiny, tiny area under the tip of the nail that he leaves a sensation of some sort after we trim his nails). And wanting mom & dad to know that mom & dad will always be able to hold, comfort, and love him as we do now. These moments have actually allowed us to have very deep conversations and prayer. We remind him “there is no spot where God is not.” While having one of these conversations on the way home today, Nicholas stopped talking and said he just wanted to pray—he did!
We are so glad to say again, that we are so thankful for God’s omnipotence, omniscience, and omnipotence at work and are His promise in loving us.
PLEASE CLICK ON VIEW PHOTOS, AND THEN THE THIRD ALBUM UNDER LINKS
Under View Photos you will see some more pictures from Halloween and UCSC friends. Attached at the end of the third album under Links you will also see pictures with other friends/hospital staff, Nicholas giving mom a facial, Nicholas applying make-up on mom, and some clowns “that you know.”
November 5, 2005 Blood Counts:
WBC: 0.8
HGB: 7.1
PLTs: 16
ANC: 768
___________________________
Friday, November 4, 2005 6:46 PM CST
THERE MAY BE ANOTHER HOMECOMING, TOMORROW
Yes, we should be leaving LPCH late tomorrow (Saturday). This is a blessing and mom & dad fervently praise and worship God as Love & Spirit manifests through Nicholas—where Love & Spirit reside!
BEAUTIFUL RESPONSE TO IT ALL
All week we have been talking about beautiful moments and YES we are naturally thankful. And, we are not just thankful for the moments when good results are provided, we are thankful for the comfort and sense of calmness upon us even during dark, scary moments. It is not easy, however, we realize that trusting God really frees us to better love and care for Nicholas (lights a path). As big as this problem seems to us, it is not a problem for God and we love Him so for loving us.
Yesterday afternoon and today the doctors talked with mom & dad about Nicholas’ amazing progress. Nicholas has navigated extremely well through all of “this stuff” this week and we know the “footsteps” caring him so it is more like personally seeing the realization of God’s omnipotent work in Nicholas. Nicholas looks good and is doing really well.
And remember the CHIMERISM DNA test performed along the BMT journey that reveal the percentage of bone marrow transplant donor cells working? Remember the goal was 100percent over time and it was first 95percent, then 98, 99 (with one factor dropping from 96 to 90), 98, and then it dropped to 5percent in September. The October 26 Chimerism test reveal that 95percent of the donor cells are working. As desired, “through it all,” the donor cells are coming back and this is good because Nicholas’ health is being revealed. And we are not surprised because we are seeing the fact that Light truly removes darkness—what a comforting sense!
NOT AN EASY JOURNEY AND THERE IS MORE LOVE UNFOLDING
Next Thursday the doctors will discuss with mom & dad the next step for a bone marrow aspirate, and sometime very soon another BMT. We were told that we have to act quickly—and here too we are finding comfort knowing that it is in God’s speed delivering Nicholas to health and healing. It is all STILL SO VERY SCARY, however, we are holding God’s Love and Spirit flowing through Nicholas so close to our hearts and minds that He is comforting us along the way.
EMOTIONAL MOMENTS
Throughout the day, Nicholas had moments where he would just cry and sob about a variety of things. Not things that were hurting him, just things on his mind keeping him from feeling normal in terms of being off of the IV pole, not taking medicine, and random things like being home (understandably). Mom & dad’s response: we hold him, love him, and pray with him. And in one case, mom let Nicholas perform a makeover on her with Nicholas in control of the makeup and where to apply it—maybe a picture or two will be uploaded to this CaringBridge site or a photo album over the weekend.
November 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, November 3, 2005 11:11 PM CST
BEAUTIFUL DAY
Nicholas is doing wonderful. He had a beautiful morning waking up from sleeping with dad on the window-bench seat (his choice) while mom slept in the hospital bed. Nicholas and dad were talking about placing an IV pole next to mom so the nurse, in the middle of the night, would think Nicholas was still in the bed and go tend to mom—what a surprise that would be for mom and the nurse!
Waking up from a very good night’s sleep, Nicholas rested a little more, and then it was time for talking and lunch (tuna on wheat bread, 3 small pickles, some Lays potato chips, and sparkling apple juice). And then he was ready to play: he was energetic, animated, and full of laughter…and then it was time to rest some more.
SOME GOOD NEWS about the October 26 Chimerism DNA test and leukemia cells were communicated to us today. However, clarity on a couple points will be secured tomorrow so we can share complete information with you.
BEAUTIFUL SURPRISE
Recently we have used the words “beautiful surprise” and we know that the beauty about Nicholas is not a surprised, it is God created and there is no surprise in His perfection. And, there is a song by India Arie titled, Beautiful Surprise, that came to mind tonight as we are talking about the beautiful day today and the beautiful response today referring to the Chimerism DNA test and leukemia cells. Following are some of the lyrics from the song:
“…
You are a beautiful surprise
What ever it is you came to teach me
I am here to learn it cause
I believe that we are written in the stars
And I don’t know what the future holds,
But I’m living in the moment
And I am thankful for the man (son) that you are
You are ever thing I asked for in my prayer
So I know my angel brought you in my life
Your energy is healing to my soul
You are a beautiful surprise
You are inspiration to my life
You are my reason why I smile
You are a beautiful surprise”
November 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, November 2, 2005 11:24 PM CST
NICHOLAS IS REVEALING THE LOVE WITHIN (INSIDE) AND ENJOYING THE LOVE FROM OUTSIDE
INSIDE: Love flowing from within is so prevalent as Nicholas is sailing through this hospital stay. And from within, God’s love is coming through—through Nicholas’ glow, sparkle, and twinkle that clearly speaks to our hearts and minds shouting that Nicholas is loved. It is so amazing to see and realize Love flowing through Nicholas—it is not about the 2 of 5 consecutive days of the treatment, it is about Love that is infinite and all that truly matters. And the sailing, it is like the proverbial footsteps, however, it is the wind underneath Nicholas’ wings uplifting him pass all that is NOT aligned with God.
AND THERE ARE STRUGGLES as Nicholas had several moments throughout the day where we needed to talk and pray with him re-affirming the fact that God—Love and Spirit—is in operation…helping us to “Be still and know that I am God.” He cried out saying:
1) Why do I have to have this Broviac (central line into his chest) when no one else in our family has to have one. I want it out today!
2) I want to be able to get up and run without having to exercise first like I use to do.
3) I want to stop obsessing over things. (When we asked, what did you just say, Nicholas just said it again, “I want to stop obsessing over things.”
OUTSIDE: Mom & dad are “provided for” in many ways. We, too, know that we are loved and God has been providing love in so many countless ways. Mom & dad sometimes have wondered what we have done to be cared for, supported, and loved by so many. So many in terms of people from all walks-of-life, churches/temples, countries, and AAA. Including our neighbors and even those we have never met except through this CaringBridge site and met through Love.
While there can be so many understandable reasons why you would not have time to care, support, and demonstrate love to Nicholas, all of you are simply incredible in the difference you are making in Nicholas’ life as well as our entire family. We know we are loved and please, please, please know that you are loved by Nicholas and our entire family for being “you” and doing what you do up close and personal or from afar!
And early evening Nicholas, mom & dad really enjoyed a walk onto the first floor outdoor quad with large water fountain, plants, and trees. It has the sounds and look of Hawaii that we love (Nicholas loves dolphins, snorkeling, and lounging in the sun—as you know from his Songs of Love playing in the background.)
And MORE SMILES, LAUGHTER, AND THAT GIGGLE AGAIN as Nicholas had another visitor from UCSC, interaction with Jacob from Recreation Therapy, and while Nicholas was taking a bath and decided to give mom a facial. (Again, photos will be uploaded in the next couple of days when we have access to our home computer with the software or have software delivered to the LPCH…) And smiles for mom & dad as we had dinner, conversation, and love brought in by amazingly loving and sweet friends Annette, Marialena, and their mother Antionette. Here too, what ever it was we have done for all of you to care for us so much, we pray and will forever work for love your way 10-fold.
WHAT NICHOLAS SAID TODAY:
1) You are the best mom I have had my whole life; you make my life wonderful.
2) I want to go home so I can make my brothers happy.
3) When I get older I’m going to make medicine that tastes good so other little kids that have to take medicine it will be yummy instead of yucky—and mom can be the taster.
November 2, 2005 Blood Counts:
WBC: 1.4
HGB: 9.2
PLTs: 29
ANC: 644
___________________________
Tuesday, November 1, 2005 11:59 PM CST
MORE SMILES, LAUGHTER, AND THAT GIGGLE
Today was another beautiful day and it’s sure easier having beautiful days when you KNOW Love and Spirit make up your days/nights. Nicholas had a quiet morning, engaging afternoon with Books-A-Live (interactive computer programs with Child Life Staff), fun evening drawing/coloring, and an energetic night with four of his brothers’ friends from college who drove from campus to visit Nicholas. (Although he just graduated last June, the relationships that have extended to mom & dad as well as Nicholas are as strong as ever, and what a blessing that his college friends are so in tuned with what matters and makes the time “to make a difference!”)
The UCSC college group brought The Little Mermaid movie and watched it with Nicholas as well as played with toys, and PS2 games. Along with Nicholas they did some artwork, and then Nicholas displayed some artistic qualities. Nicholas played out various scenes from That’s So Raven and The Grinch. The smiles, laughter, and that giggle shined brightly from Nicholas.
We know we are blessed to have all of you in our hearts, us in your thoughts and prayers, and most of all God as our light—lighting up the night and illuminating the days brighter and brighter.
NO MORE CYCLOSPORINE
Today administering Cyclosporine stopped so the extra hair on his face, eyebrows, neck, and back will soon fall off.
NOTE: Pictures from the last two days should be posted under View Photos and/or the last album under Links within the next few days.
November 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Monday, October 31, 2005 11:59 PM CST
BEAUTIFUL DAY, AND WE ARE NOT SURPRISED
Today, Nicholas is back at LPCH and it was a beautiful day. His smile, laughter, and giggles were beautiful to see and hear—and we are not surprised because we know God is the source of Nicholas’s joy and happiness.
LPCH had “trick or treat” events throughout the hospital and the staff and their departments were dressed, decorated, and provided a fun atmosphere for all of the kids. It was fun for mom & dad as well to experience the joy illuminating from the kids. And the staff on 2-North (where Nicholas’ room is located) looked great: Cowgirl, Thelma from Scooby Doo, Daphne from Scooby Doo, Harry Potter character, a Martian, Princess Leia from Star Wars, a clown, and more.
It’s comforting to know that God, Divine affection flows throughout Nicholas’ body and it is pure! So while Nicholas will be in LPCH for 6 days, we know and understand more and more each day the realization that God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be placed into Nicholas’ body that can have power over God—nothing.
October 31, 2005 Blood Counts:
WBC: 1.3
HGB: 11.7
PLTs: 41
ANC: 210
___________________________
Sunday, October 30, 2005 11:25 PM CST
LOVING FUN WITH FAMILY AND FRIENDS
Today was another full day of fun for Nicholas with his grandparents, brothers, and friends. This evening’s one-day early Halloween trick or treating planned by neighbors on the entire court was fun-tastic. The kids on the court were all dressed in their Halloween outfits, and most of the parents at their homes were dressed as well. There was fun in the air and fun in everyone’s heart. A couple family friends also came to share the moments with us. PLEASE CLICK ON VIEW PHOTOS TO SEE A FEW PICTURES FROM THIS EVENING and click on the third album under Links for other current pictures (at the end of the album).
GOD IS GREATER THAN ANYTHING AND EVERYTHING
God “is” love, and there is no disease in pure absolute love. We know this to be true and we know that God is encamped within Nicholas. Mom & dad release this problem to God—He is love and He is within Nicholas and disease has no place in love so it has no place within Nicholas. God’s love circulates throughout Nicholas and we are so grateful that His love is pure. So tomorrow at Stanford-LPCH, there is nothing for us to fear.
October 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: NA
___________________________
Saturday, October 29, 2005 11:59 PM CST
NICHOLAS HAD A GREAT, PERFECT DAY
Nicholas had a great, perfect day. And playing with KJ this afternoon was a special treat.
AND tomorrow evening our Brookdale Court neighbors are having an outdoor Halloween trick or treat party because Nicholas will not be home on Halloween—thank you friends/neighbors!
Our loving God has Nicholas fully and firmly in his hands and nothing can even partially loosen God’s love and protection because His omnipotence, omniscience, and omnipresence ARE in operation. It is not just about words of encouragement and hope, it is about knowing that these words are true—and this knowledge and the rest of the journal below I ask that you know to be true for Nicholas!
TODAY’S GREAT, PERFECT DAY AND DAYS, MONTHS, AND YEARS TO COME ARE NOT MIRACLES, THEY ARE MANIFESTATIONS OF LOVE—GOD IS LOVE
Several times in these journals mom & dad have talked about needing a miracle. God has been the constant foundation in these journals, is the constant foundation, and will always be the constant foundation in these journals and our lives. I was reminded of the following today and it provides greater understanding of God’s love for Nicholas. And His love is true, not a miracle.
God loves Nicholas more than we could ever know. As we think about how much we love Nicholas...that's how much God loves Nicholas and us…even MORE. Would He leave the side of the children He cares so deeply for? No. "God is a very present help in trouble." He is ever present, right there, right now. We are not alone and this problem is NOT too big for God. The Bible says, "God is of purer eyes than to behold evil". If God sent his son to heal disease, sin, blindness, every ill and to raise people from the dead, wouldn't that mean that Jesus was doing God's will? Was there ever a time when Jesus said he couldn't heal someone? That it was too late or too severe? No. Because Jesus knew that God did not send disease, sin or suffering. So Jesus healed by seeing mankind as God created them. As it states in Genesis: "And God created man in His own image, in the image God created He him, male and female created He them." So Nicholas isn't a material person needing physical healing. He is the image and likeness of God. And what is God? The Bible says, "God is Love. God is Spirit." So Nicholas is the image and likeness of Love. The image and likeness of Spirit. We don't look to the body for what is true about us, we look to God. So what is God saying about Nicholas? God is saying, "This is my beloved son in who I am well pleased."
October 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: NA
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Friday, October 28, 2005 11:59 PM CDT
MORE FAMILY, FRIENDS, FUN, AND SOMETHING EXTRA--ENERGIZING
Visits by family and friends helped to generate fun for Nicholas all day and night, and provided something extra, family and friends (and you through connecting with us as you do) created an atmosphere around Nicholas that was energizing. Amazingly, the energy created, provided “sparks” that literally energized him.
FOLLOWING IS A CAPTION OF TODAY’S VISITS, PROVIDING A FLAVOR OF “DAILY” SUPPORT FROM ALL OF YOU—THANK YOU
A visit from uncle David (dad’s brother) was very comforting for mom & dad. And this morning when friend KJ arrived the moment provided a spark that you could actually see in Nicholas demeanor and actions. A visit from Emma whom we met through her daughter (Lauren) who is fighting leukemia also provided comfort for mom & dad. Then a visit from Nicholas’ former Montessori school teacher, Ms Shirley, and Sara was so fun—they carved pumpkins with Nicholas and KJ and read lots of cards and messages from school. And friend Phyllis and her daughter, Allie (brother Matt’s friend), showered us with love through their brief visit that was followed by a visit from friend Cyndi that helped mom via comforting conversations. Rounding out the evening, friends Bri, Jenessa, and Kelsey (brother Chris’ former college mates) helped to create and sustain bursts of energy for several hours.
We are so thankful for God’s love providing what Nicholas needs, and what mom & dad and the family needs. And we are thankful for the love prompting Nicholas to continually open up like a flower showering us with his love and freshness—doing more and more toward complete health, healing and a cure. AND, it is hard to believe that we are faced with the dilemma in front of us this Monday.
The freshness of the day was more walking (the college girls sparked this) and an energy level that resulted in Nicholas actually “leaping” from one of them to Chris in a fun, playful way that carried on for several hours. God is good and we know He is with Nicholas and shall see Nicholas through all that confronts him.
***Please click on View Photos for pictures of today's visits***
October 28, 2005 Blood Counts:
WBC: 0.7
HGB: 11.5
PLTs: 93
ANC: 10
BLASTS: NA
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Thursday, October 27, 2005 11:59 PM CDT
FAMILY, FRIENDS, AND FUN
Today was a good, full day beginning and ending with family. In between there were friends, friends, friends, and fun throughout. There was quiet time and quiet moments for Nicholas talking with friends live and on the phone (of course Nicholas called KJ and KJ called Nicholas), there were loud moments and laughter with family & friends (Nicholas played with Neda, Hana, Joey, and his cousins Mikayla, Alex, & Domi), there was fun throughout the day for everyone, and there was quiet time and moments just for Nicholas, mom & dad, and two of Nicholas’ three brothers.
And the silver lining of the day was you, your guestbook entries, conversations with us, and feeling your thoughts and prayers—thank you.
The pumpkin patch with family and friends was great. There were many Halloween themes, fun themes and scary themes. And because it was at Orchard nursery, there were beautiful flowers, plants, and lots of water fountains & waterfalls providing picturesque snapshots for us all.
THINGS OF THE DAY: The sun, the cool breeze, pumpkins, flowers, and wild turkeys up close and personal (gobble, gobble, gobble—those are the words and sounds Nicholas made as we came across the wild turkeys at the Lafayette reservoir after the pumpkin patch).
AND: Nicholas was walking throughout the house by himself today (strength in his legs is coming back). Tonight when he was walking while his life-long friend Joey was holding his hand, Nicholas said, “I’m showing Joey how to help people walk.”
MORE FAMILY, FRIENDS, AND FUN TOMORROW
More of today is planned for tomorrow and the beauty of the engagement is that we are so blessed to know we are loved by God and provided your love in the ways that you share.
AND THE BEAUTY OF ALL OUR TOMORROWS: Is that we are living today and living for tomorrow, the next day, the next week, the next month, and the many years to come loving God, and loving & thankful for Nicholas, Chris, Tim, Matt, and you—our family and friends.
***PICTURES: A few from today are under View Photos and several from today are on the third photo album under Links***
October 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: NA
Wednesday, October 26, 2005 11:59 PM CDT
UPDATE #2
THE NEWS WE FEARED
This evening our doctors delivered devastating news to Sheila and me, Lamont (worst than the devastating news when Nicholas was diagnosed with leukemia). The un-official findings from the Pathology department on today’s bone marrow aspirate reveals that there is 41percent blasts in Nicholas’ marrow. Meaning the relapse re-induction treatment has failed. This leaves us with few options: Clofarabine (a new drug that some have touted as a miracle drug) or Palliative care (taking Nicholas home, caring, and supporting him to make him as comfortable as possible to live as long as is God’s plan).
AND HOLDING ON TO HOPE…HOLDING ON TO PRAYER AND GOD
We trust and believe in God and feel that His plan for Nicholas is for Nicholas to live strong and long. SO WHILE WE HAVE COME HOME TONIGHT WE WILL BE GOING BACK TO STANFORD ON MONDAY to begin treatment with Clofarabine. Although this drug has very awful side effects, we believe Nicholas can be "shielded" from danger and healed in Jesus' name. Please listen again to the words of Nicholas' song playing in the background, read the poem above, and PRAY with us for Nicholas' healing and cure. Please, please, please keep all of the kids afflicted with these awful diseases in your prayers.
WHAT NICHOLAS SAID TONIGHT
When told we were leaving the hospital today, it wasn’t what he said it was what he did: SMILED big and bright. Getting into bed he said, “Ahh, my pillow and my bed are nice and cozy.” And for tomorrow, he said, “I want to go to the pumpkin patch and get a big, oval pumpkin.” So that is what we will do, we will take him to get his pumpkin, we will keep him nice and cozy, and we will work, work, work to keep him smiling big and bright!
FAMILY PRAYER ON APRIL 7 BEFORE THE BONE MARROW TRANSPLANT
God is the same yesterday, today, and tomorrow! Our faith is in God and He is the director over Nicholas, providing direction for mom & dad, and guiding the minds and hands of Nicholas’ doctors. The prayer below meant the same then and means the same now…Oh, Father, we love You, want You, and need You:
Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, but will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.
It is written in Your Word that Jesus Himself took our infirmities and bore our sicknesses. So with great boldness and confidence we say—on the authority of the written Word—that Nicholas is redeemed from sickness.
Satan, we declare to you, in the Name of Jesus, that you have no authority over Nicholas Colby Gilbert, and you are rendered powerless because we bind you from operating against Nicholas in any way. He is loosed from your assignment. He is the property of Almighty God and we give you no place in Nicholas. He dwells in the secret place of the Most High God. He abides and remain stable and fixed under the shadow of the Almighty, Whose power no foe can withstand.
Now Father, because we reverence and worship You as God, we have the assurance of Your Word that the angel of the Lord encamps around about Nicholas.
We confess the Word of God abides in Nicholas Colby Gilbert and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. Your Word is medication and life to his flesh, for the law of the Spirit of life operates in him.
We have on the whole armor of God and our shield of faith protects Nicholas Colby Gilbert from all the fiery darts of the wicked. Jesus is the High Priest of our confession, and we hold fast to our confession of faith in Your Word. We stand immovable and fixed in full assurance that Nicholas Colby Gilbert have health and healing both spiritually and physically right now, in the Name of Jesus, Amen
UPDATE #1 (3:00 PM CDT)
SADLY, NICHOLAS IS NOT IN REMISSION
Our doctors just informed us that preliminary it looks like there is some residual leukemia—WE ARE SO VERY, VERY SAD THAT NICHOLAS IS NOT IN REMISSION.
The re-induction chemotherapy regimen did not free Nicholas from leukemia. Our doctors are conferring to determine what chemotherapy medicines to administer. We will confer with them later today; and tomorrow we will have the final results & details on the bone marrow aspirate.
WE ARE NOT GOING HOME, YET!
Nicholas is amazingly handling and getting through all of this “leukemia and bone marrow stuff,” at least he is doing everything and more that he is asked to. He is doing everything right! He is our inspiration; he is love! Nicholas’ body has recovered pretty well from the chemotherapy and the doctors feel that it is safe to get started on chemotherapy again. However, the chemotherapy determined will be based on their toxicity because Nicholas has already absorbed so much during the past 36 days of relapse treatment, 201 days since the bone marrow transplant, and 341 days since he was diagnosed.
Note: Early this morning Nicholas had a Red Blood Cell and Platelets transfusions.
AND THROUGH OUR MOTHER FATHER GOD WE STILL HAVE WHAT WE NEED
Miracles happen and in Jesus’ name Nicholas can be healed right now, tomorrow, in God’s speed. We know that it is not our will, but His, that will be done. And we know that Nicholas has been doing God’s work in the way that he is caring, loving, and sharing of himself to us and to you. And we PRAY for Nicholas to continue that work with us and you—thank you and please, please, please continue to PRAY for Nicholas’ complete healing! We are dreaming and want to realize complete healing for Nicholas. As we write this update Nicholas is waking up, looking out at mom & dad, looking outside as raindrops fall—and it feels like a dream as he awakes and illuminates mom & dad with warmth and love. We are glad that it is not a dream; it’s reality and we feel the love—we PRAY that Nicholas “feels” the love every moment!
October 26, 2005 Blood Counts:
WBC: 0.5
HGB: 6.8-7.3
PLTs: 28
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: Preliminary results of today’s bone marrow aspirate, SADLY, indicate that there is residual leukemia. (Please see above if you have not already)
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Tuesday, October 25, 2005 11:01 PM CDT
Day 340 since Nicholas’ original leukemia diagnosis
Day plus200 since the BMT
Day 44 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 35 of relapse treatment
PROCEDURES TOMORROW (WEDNESDAY)
Tomorrow Nicholas will go to the operating room for a bone marrow aspirate (BMA, removal of a small sample of bone marrow—from the hip—through a needle), bone marrow biopsy (removal of tissue), and a skin biopsy (removal of very small area, about 4mm, of skin to assess the rash for GVHD or not). Results of the aspirate should be known on Thursday—please see information below under Blasts. Preliminary results of the skin biopsy will be known Thursday and final results should be known on Friday.
Because the skin biopsy will be performed while Nicholas is under anesthesia he will not feel the procedure—and we are so glad that he will not because he has experienced so much during this “leukemia and bone marrow stuff” (as you know).
Referring to yesterday’s journal, the cardiologist is not overly concerned with Nicholas’ heart and his ability to undergo tomorrow’s procedure. And the assessment includes that the current blood pressure medicine Nicholas is taking (side effect of other medicines taken along this cure journey) is appropriate—no changes needed. Thank you, Lord!
BLOOD COUNTS HAVE DROPPED
Today’s blood counts have dropped (please see caption below) when we were hoping they would continue to go up into range. This is concerning because it could mean that there is some residual leukemia; the BMA tomorrow will provide some answers. Or it could be that there is a virus requiring the blood cells to work toward fighting an infection or disease. We PRAY that it is just a little infection requiring his white blood cells attention and that the chemotherapy has put the leukemia to rest once and for all.
WHEN WILL NICHOLAS GO HOME?
If leukemia still exists in Nicholas, we will have to remain in the hospital for more chemotherapy. Otherwise, we may be able to go home with very mild chemotherapy for a period of time via outpatient.
ACTIVE DAY
Physical therapist—leg exercises and a short basketball game, Books-A-Live—computer interaction, short walks in the room, card game with Pokemon cards, talking with friends on the phone, reading, laughter, and some fun interaction with nurses.
Understandably, Nicholas was not thrilled with more doctors examining him (dermatologists assessing his skin before tomorrow’s procedure).
While the days can be active and we are active with Nicholas toward him being happy, we want Nicholas to be home, out of the hospital, and with our family and you.
WE HAVE WHAT WE NEED IN GOD
Miracles happen and we are claiming one for tomorrow’s test results. Believe with us that the marrow is free from any of those nasty leukemia blast cells and we get the results we PRAY for so hard.
October 25, 2005 Blood Counts:
WBC: 0.5
HGB: 9.1
PLTs: 29
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: Tomorrow’s (Wednesday) bone marrow aspirate results will let us know if Nicholas is free of leukemia (no Blasts). Results should be known on Thursday. To be declared that Nicholas is “in remission” he needs to be free of Blasts, normal bone marrow producing healthy cells including WBC of 5.5-15.5, Platelets of at least 100, and an ANC of at least 1,000.
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Monday, October 24, 2005 11:59 PM CDT
NO PAIN TODAY
This morning the PCA machine was disconnected and Nicholas had a good day, free of any pain. Early evening Nicholas said, “Hey, my stomach and bladder are feeling much better. My stomach doesn’t feel like anything.” What a blessing, being free of any pain!
He ate very well all day. And for the first time in 3 weeks he was free from being hooked to an IV pole. No IV lines or machines pumping medicine into Nicholas from early afternoon until midnight. So, we picked him up, put him in our arms, and twirled around without constraints of any lines. Early evening we went for a walk around the hospital and to a spot we call Hawaii because it is outdoors, has a large water fountain, tropical plants, and is in the center of the hospital so walls protect the area from the weather. We were in “Hawaii” as it was getting dark so looking up into the sky was a beautiful sight.
LOOKS LIKE THE RASH IS GVHD
Other doctors assessed the rash on Nicholas’ back and feet and they all concurred that it appears to be caused by GVHD. It could be that the donor cells (from the bone marrow transplant) are producing and they are prompting the GVHD. With procedures scheduled for Wednesday, sample marrow will also be drawn for the Chimerism test (that will tell us the percentage of donor cells working). If the donor cells are producing it could be a good thing AND the GVHD could be a bad thing. We are constantly PRAYING for God’s navigation and His direction as His omnipotence, omniscience, and omnipresence are in operation.
GETTING READY FOR NEXT STEPS: ANOTHER ROUND OF CHEMOTHERAPY AND THEN A DECISION OF BMT OR NO BMT
As Nicholas, mom & dad, and the medical team are preparing for next steps, we had an Echocardiogram and EKG to check the condition of Nicholas’ heart because he has been going through many procedures and under general anesthesia many times. There is mildly decreased left ventricular function—tomorrow our doctors will confer with the cardiologist and we will clarify and discuss implications. It appears this situation was caused by one of the chemotherapy medicines. Remember, we talked awhile back about the overall cure process medically: administering medicine to do one thing and side effects of that medicine can cause other things. Here too, we are so glad our loving God’s omnipotence, omnipresence, and omniscience are in operation.
FUN EVENING
Nicholas was very playful with mom & dad and the nurses. He enjoyed drawing and coloring pictures—one of his nurses’ birthday is at midnight and he colored a beautiful picture for her and wrapped it up. Nicholas asked if he could be awake at midnight so he could walk out onto the nurses’ floor to give her the gift. And he will do just that tonight!
October 24, 2005 Blood Counts:
WBC: 1.0
HGB: 8.8
PLTs: 52
ANC: 760
BLASTS: Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.
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Sunday, October 23, 2005 11:30 PM CDT
GOING HOME IS DELAYED
It has been a while since we used the phrase “roller coaster” to describe Nicholas’ leukemia journey. And roller coaster, physically and emotionally, and “slippery road” still describe the journey. There are good and sad moments as well as days. However, there are blessings that we realize, everyday as well, that help make some moments and/or days a little easier to navigate.
The rash on Nicholas’ back has spread a little more on his back and onto the tops of his feet. And liver enzymes are really high out of range. Starting today, Actigal will be administered to protect the liver (he received Actigal during the BMT treatment). The doctors are suspicious of GVHD coming into play so they are going back up on the steroids today. Also today, we started a new pain medicine, Pyridium, to combat the lower stomach pain, specifically bladder—it seems to be working because Nicholas has been in less pain and having a “lively” night.
Going home is delayed; we are hoping to go home by Friday.
A “WALK” ON THIS JOURNEY
Tomorrow (Monday) marks week number 3 of this hospital stay and it has been very hard for mom & dad for several reasons, including Nicholas being in pain, keeping him from walking and Nicholas having very low energy keeping him from talking & playing. As we were getting ready to take Nicholas outside onto the hospital patio, by himself he got off the bed and said, “I will walk out of the room today.” And although we had to support him by holding his arms, he “gingerly” shuffled his feet and then began to slowly walk. He walked out of the room to the cheers from nurses, and onto the patio.
And later tonight he was close to his usual self in terms of talking, joking, playing, and even scaring the nurses by…pretending to be sleep at different times of the evening and saying BOO when they got close. Seeing his vibrant facial expressions and his lively interaction is so beautiful—and we PRAISE God. And we are so thankful for your continued prayers.
So tonight we are disappointed that we are not going home in the next couple of days; and tonight we are very pleased that Nicholas (like the sun brightly shining with rays warmly reaching out) is looking happy and expressing happiness through his playful nature! We are thankful our loving God navigates the roller coaster and slippery road.
October 23, 2005 Blood Counts:
WBC: 1.4
HGB: 10.4
PLTs: 96
ANC: 1,106
BLASTS: Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.
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Saturday, October 22, 2005 6:57 PM CDT
UPDATE #2 (11:59 PM)
A NEW RASH
Early evening Nicholas was scratching his back and after mom saw a rash, the doctors examined it. Benadryl was administered and the itching stopped. Nicholas’ back, and the rest of his body, will be continuously examined. There were no new medicines administered or food consumed so it is unclear what may have triggered the rash; examinations will also assess for GVHD because GVHD would not be a good thing. If it is GVHD we will have to go back up on the steroids that we have been tapering down (to get him off steroids). We PRAY that it is not GVHD and we PRAY for complete healing in Jesus’ name!
WHAT NICHOLAS SAID
Late afternoon, one of our other sons called dad at the hospital asking if dad could meet him at a basketball game. Nicholas, overhearing dad on the phone say that he should stay with Nicholas and mom, said the following to dad in a sincere, sensitive voice. “Dad, it’s okay, you need to spend time with your other sons too.” Kids are amazing; it’s amazing to just listen and receive life lessons from them, even when they need attention.
NIKE MARATHON AND LEUKEMIA & LYMPHOMA SOCIETY
Tomorrow (Sunday), there are several friends running in the Nike Marathon in San Francisco for the Leukemia & Lymphoma Society in honor of Nicholas. Thank you, this is another blessing. Thank you runners, supporters, contributors, sponsors, and everyone for caring and loving in your way whether you are a part of this marathon or not. You, you are making a positive difference in peoples’ lives!
UPDATE #1
PAIN AND VIRUS
Remember the BK Virus stated in the October 10 journal, current lab results reveal that it is still positive. This could be a factor in some of the pain Nicholas continues to experience, consistently experiencing around the clock. As stated October 10, Nicholas’ immune system has been suppressed with the chemotherapy and immunosuppressive kids are at risk for the BK Virus to surface. Like the CMV virus discussed in the August 18 journal, the BK Virus can lie dormant in anyone’s body. There is no action to take to cure it, it just takes time and the bone marrow producing “T-cells” to push the virus back to being dormant.
In addition to the PCA administering Dilaudid (pain medicine) every hour via IV, oral Dilaudid is on standby to administer if needed. We know that we are asking and PRAYING for so much. And you know, Nicholas has been doing everything right and we will love our Father always and always work and PRAY for our “needs.” Nicholas is truly a blessing: he cares for others when he should just be cared for, he is loving when he should just be loved, and he is experiencing pain when he should be without pain.
Note: Thankfully, other blood cultures and urine & stool analyses have come back negative.
GOING HOME MAY BE DELAYED
The pain Nicholas continues to experience may delay when we can go home. One of the reasons the PCA dosage has been reduced, tapering down, is to time the dose to be at zero or disconnect the PCA with Nicholas’ discharge. However, Nicholas being without pain is our first objective. We need to get Nicholas to be without pain—we do not want to see him “patting” his lower stomach when resting and trying to sleep. Or “patting” his lower stomach to just be comfortable.
October 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Unable to be determined because there were no white blood cells to analyze in the marrow on October 20. Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.
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Friday, October 21, 2005 11:59 PM CDT
NAVIGATING THIS SLIPPERY LEUKEMIA JOURNEY
Final BMA results from yesterday reveal that the marrow was cleaned out; there were no white blood cells to analyze. This means the chemotherapy is doing its job destroying white blood cells including white blood cells that may have leukemia. Nicholas’ blood counts are coming back up and we PRAY that the blood counts continue to rise into range so that with results of another BMA planned for next Wednesday, the doctors will be able to declare Nicholas is in remission.
As Nicholas is passing the remission phase of the journey, his doctors are working on the map to pass the next two phases: 1) another round of chemotherapy similar to a “consolidation” phase, perhaps with chemotherapy medicines that Nicholas’ body has not seen before, 2) and bone marrow transplant OR no transplant; next week we should be scheduling a bone-marrow-transplant conference to take place within the next couple of weeks to determine what should be done for this phase. We continually PRAY for wisdom to doctors and directions for mom & dad.
Nicholas’ Platelets count was 11, from labs drawn at 1:00am Friday, before a Platelets transfusion that took place around 2:00am. Again, with hopes his overall blood counts rise into range and with Nicholas’ progress the doctors are still planning for him to be discharged—going home—the early part of next week. The dose for the PCA machine was reduced twice today. While Nicholas is still experiencing sporadic lower stomach pain, he has the pain button connected to the PCA to provide immediate relief.
He is making progress, and that is good! Nicholas has come along way, and we have a long way to go. God speed!
Remember, “Do you want a piece of me?” Well, those words and Nicholas’ expressiveness surfaced yesterday and today. And tonight, he was craving Gold Fish (crackers). When his nurse came into his room, he was joking and having fun with her asking if she would go and find some for him. Nicholas also told his nurse that she could take one of his quarters and pick up some Gold Fish from a machine. Oh, and then dad picked up some Gold Fish from the store—and we all had some tonight.
October 21, 2005 Blood Counts:
WBC: 0.6
HGB: 10.3
PLTs: 11
ANC: 420
BLASTS: Unable to be determined because there were no white blood cells to analyze in the marrow.
ALT (LIVER ENZYME): 235. Target range: Below 40.
AST (LIVER ENZYME): 102. Target range: Below 60.
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Thursday, October 20, 2005 11:59 PM CDT
Day 335 since Nicholas’ original leukemia diagnosis
Day plus195since the BMT
Day 39 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 30 of relapse treatment
TODAY’S BMA PROCEDURE
The bone marrow aspirate procedure went well—After all of these procedures I guess it was time for Nicholas to be “stingy” with giving up bone marrow. The doctors had to go deep to retract the marrow. However, they got plenty of marrow for various tests including Cytogenetics{DNA indexing to confirm that there are still no hypodiploid cells (reason for the BMT)}.
And from the initial review of the marrow, the doctors are reporting that it looks clear of any leukemia—thank God! Final results from this BMA should be delivered tomorrow; and it will just provide us with a “remission status” as another BMA will be performed in about two weeks that will be a significant medical indicator for remission.
GETTING CLOSER TO GOING HOME
The dosage of pain medicine continuously delivered into Nicholas’ body from the PCA machine was reduced again today (see the October 11 journal for more information). Nicholas is progressively shining brighter and brighter—bringing smiles to mom & dads hearts and our spirits. And we thank God for keeping him in His hands throughout this journey.
SOMETHING ELSE NICHOLAS SAID—WELL, SANG
The days and nights for Nicholas, mom & dad have been very long and with very little rest. Last night, mom was not sleeping well and when Nicholas noticed her difficulty sleeping he sang to her. He sang a song that many of you will remember, remember singing to your children or other loved ones. And very late at night he had the presence of mind to change the song for a better fit. He sang, “Hush little momma don’t you cry, Nikko’s going to buy you a mocking bird, If that mocking bird don’t...” Then he stopped, well mom thinks he stopped. She doesn’t recall anymore because she fell asleep.
October 20, 2005 Blood Counts:
WBC: 0.4
HGB: 9.8
PLTs: 24
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA. Tomorrow we should have results from today’s BMA—we PRAY that there will be no blast (4percent on October 3).
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Wednesday, October 19, 2005 11:59 PM CDT
STATUS SNAPSHOT:
VINCRISTINE: Last chemotherapy of the relapse induction phase was completed today. We are PRAYING that Nicholas is shielded from side effects.
BONE MARROW ASPIRATE TOMORROW (THURSDAY): Late tomorrow morning Nicholas will go to the operating room for a bone marrow aspirate (BMA, removal of a small sample of bone marrow—from the hip—through a needle). On Friday we should have results on Nicholas’ remission status—we PRAY that there will be no blasts.
TAPERING OFF STEROID: Tomorrow is also the start of tapering off of the steroid, Prednisone, and on October 25 Nicholas is scheduled to be off of it. We are PRAYING that through God, Nicholas is shielded from any negative impact—in fact, we are thankful knowing that God’s omnipotence, omnipresence, and omniscience is in operation. Through Him we are comforted knowing that He is in control and that Nicholas is His perfect child.
WHEN NICHOLAS WILL BE GOING HOME: Early next week.
DOCTORS NOW TALKING ABOUT NEXT STEPS: As Nicholas continues to improve, and we PRAY that he will formally be in remission in the next couple of weeks, his doctors (oncologist and transplant) are analyzing the next steps to take. Our doctors were so pleased to say that it “looks like we are getting what we wished for” referring to remission. They are analyzing the best approach toward a cure: A) Another bone marrow transplant (including a Haplotype transplant that is like a "half match" with mom or dad being the donor versus a "match" as originally performed because the half match may generate an additional fight against any leukemia that could remain in Nicholas whereas the match may not provide this benefit based on the relapse) or B) No transplant if it is determined there is a good chance the original donor cells will begin to fully produce healthy blood cells. Here too, we are thankful knowing that God’s omnipotence, omnipresence, and omniscience is in operation…
WHAT NICHOLAS SAID OR DID:
A) While on his back in bed, Nicholas had both legs up in the air like he was riding a bicycle. We asked what he was doing and he said, “Exercising!”
B) While going to the bathroom this afternoon, he said, “…this is my idea of the worst vacation ever!” He said when we are away from home we should be on a vacation. (Tonight, Nicholas was reflecting on his vacations in Hawaii, Vancouver, Montreal, San Diego, “Disneyland,” Las Vegas, Colorado...
October 19, 2005 Blood Counts:
WBC: 0.7
HGB: 10.0
PLTs: 30
ANC: 500
BLASTS: NA. On Friday we should have results from tomorrow’s BMA—we PRAY that there will be no blast (4n October 3).
ALT (LIVER ENZYME): 247. Target range: Below 40.
AST (LIVER ENZYME): 132. Target range: Below 60.
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Tuesday, October 18, 2005 11:59 PM CDT
STATUS after 16 days in the hospital, 6 fevers, 5 platelets transfusions, 2 red blood cells transfusions, 2 viruses/bacteria, and perhaps 1,000,000s of words of support, love, and healing as Nicholas’ rays of sunshine are getting brighter:
ANC
Nicholas has an ANC! Remember, ANC reveals the ability to fight infection (absolute neutrophil count) and at this point the immediate goal is to have an ANC of 500. After 15 straight days of “not having an ANC,” Nicholas has an ANC of 480. A good start and another blessing—we thank God for his loving guidance and for your prayers.
VINCRISTINE MAY BE ADMINISTERED TOMORROW (WEDNESDAY)
Tonight’s labs will aid determination of administering the last dose of Vincristine tomorrow. The doctors will be checking Nicholas’ liver function (specifically the Bilirubin level) to determine if the Vincristine dose should be adjusted.
BONE MARROW ASPIRATE
The doctors are considering performing a bone marrow aspirate Thursday. We are hoping conditions will be okay to do the aspirate and the result will reveal remission status.
REDUCTION IN PAIN CONTROL MEDICINE AND DOCTORS TALKING ABOUT US LEAVING THE HOSPITAL SOON
Today Nicholas’ PCA was reduced, so hourly there is less pain medicine being administered via IV. The dose will be tapered, and along with PRAYING that Nicholas’ blood counts come back into range and he continues to feel better, the doctors are talking about Nicholas leaving the hospital. It is possible we can go home the end of this week or early next week.
TAPERING STEROIDS DOWN AND WATCHING THE RASH
The relapse treatment has called for daily doses of steroids and then stopping the steroids. You may remember the awful-long GVHD that impacted Nicholas’ skin and the continued-long time Nicholas has been on steroids to combat the GVHD. Because Nicholas has been on these steroids for very long time, it will not just be stopped. It will be tapered down beginning this coming Thursday.
The rash on his ankles and inner thighs, as well as assessing his overall body, will be closely watched.
NICHOLAS IS SHINNING BRIGHTER EVERY DAY
This evening, Nicholas really enjoyed his “tasty” baked chicken legs, rice, and broccoli. Although he has been eating a little bit the last couple of days, tonight he looked so happy during his dinner—eating, talking, and laughing.
And he walked around the bed tonight!
AND A FUNNY SPIN ON THE AWFUL PAIN HE HAS BEEN GOING THROUGH
As you know, Nicholas has experienced continued pain in his stomach area. To take his mind of the pain and sometimes just to make him feel better, Nicholas either pats his stomach (pat, pat, pat…) or has mom or dad pat his stomach throughout the day and night. While mom was patting him today, Nicholas said, “I told you my stomach is the victim here.” He was referring to mom not patting him in the “just” the right spot.
October 18, 2005 Blood Counts:
WBC: 0.7
HGB: 9.0
PLTs: 56
ANC: 480
BLASTS: NA. Next analysis and reporting may be around October 21 if a bone marrow aspirate is performed October 20—we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): NA. Target range: Below 40.
AST (LIVER ENZYME): NA. Target range: Below 60.
___________________________
Monday, October 17, 2005 9:08 PM CDT
STATUS:
1) Early this morning Nicholas received another Platelets’ transfusion because his Platelets had dropped back down to 4.
2) Today’s procedure was chemotherapy into his spinal fluid only. He was in the recovery room for a short period of time.
3) Because other chemotherapy was delayed last week, the plan is to administer it (last dose of Vincristine) sometime in the next couple of days. Nicholas is continually being examined to determine an appropriate time based on the his overall condition, including stomach pain and periodic constipation due to Ileus (Vincristine side effect impacting the bowels).
4) After the Vincristine, a bone marrow aspirate is planned to be performed sometime next week to assess Nicholas’ remission status.
5) Rash on his ankles and inner thighs is suspicious. At this time the doctors do not think it is GVHD (it is not presenting itself like GVHD he experienced after the BMT), it’s possibly a reaction to one of the medicines. We PRAY that it is not GVHD.
5) Though not “feeling” his radiant self, Nicholas still “shines” with love and appreciation. Whether he is halfway asleep, moaning in pain or discomfort, coming out of the recovery room with his mask (respirator) on, you will still hear, “Thank you!” from Nicholas to those that are helping to take care of him or friends who stop by to say hello.
6) And this evening after resting from today’s procedure, Nicholas asked for and had a tuna sandwich with lettuce, and chips & salsa.
October 17, 2005 Blood Counts:
WBC: 0.5
HGB: 10.9
PLTs: 4
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): 85. Target range: Below 40.
AST (LIVER ENZYME): 44. Target range: Below 60.
___________________________
Sunday, October 16, 2005 11:54 PM CDT
A DAY OF REST
Nicholas spent most of the day resting. He did not sleep peacefully last night; however, throughout the day he did rest/sleep peacefully.
PROCEDURES TOMORROW
Tomorrow (Monday) Nicholas will go to the operating room at noon for a lumbar puncture and chemotherapy into his spinal fluid. Tonight lab work will be performed and we will be checking to ensure his Platelets are at a safe level before the procedure (otherwise Platelets will be transfused before the procedure).
October 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4% on October 3)
___________________________
Saturday, October 15, 2005 11:19 PM CDT
Day 330 since Nicholas’ original leukemia diagnosis
Day plus190since the BMT
Day 34 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 25 of relapse treatment
TRANSFUSIONS, FEVER, AND WE STILL KNOW THAT WE ARE BLESSED
AND ANOTHER TRANSFUSION—Red Blood Cells—this afternoon as Nicholas’ Hemoglobin had dropped to 7.8. Early evening he was up in bed and very alert and active. It has now been 13 days in the hospital for this stay, and the last few days Nicholas has cried specifically about wanting to go home…, be in his room, and be in his bed.
AND ANOTHER FEVER—this morning Nicholas spiked another fever around 4:00 AM. Thankfully, the rest of the day he was without fever.
AND WITH IT ALL WE KNOW WE ARE BLESSED—knowing God, knowing He loves Nicholas, and knowing God has us in His hands as we are going through all this “leukemia and bone marrow stuff” keeps us spiritually comforted.
Nicholas had a good evening; he was his playful self with the nurses, friends, and mom & dad. Remember, Nicholas months ago scaring the medical staff? Do you remember what he would do? It’s associated with the upcoming holiday. It’s….”boo!” A couple of times tonight he did things and then said, boo, to scare dad and some of the nurses. What a blessing to see and hear Nicholas interact with energy and spirit. He was vibrant tonight—thanks and glory to God!
TYPE OF GRAM NEGATIVE ROD VIRUS/BACTERIA IDENTIFIED
The type of Gram Negative Rod virus/bacteria that surfaced on October 12 has been identified as Citrobacter. Thankfully, it is treatable with antibiotics.
NOTE
To answer the question on a guestbook entry, Nicholas found five $1 bills on his treasure hunt last night.
October 15, 2005 Blood Counts:
WBC: 0.1
HGB: 7.8
PLTs: 32
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): 81. Target range: Below 40.
AST (LIVER ENZYME): 62. Target range: Below 60.
___________________________
Friday, October 14, 2005 11:37 PM CDT
Day 329 since Nicholas’ original leukemia diagnosis
Day plus189since the BMT
Day 33 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 24 of relapse treatment
ANOTHER PLATELET TRANSFUSION
Nicholas’ Platelets were down to an all time low of “4”, so he very much needed another transfusion which he got this morning. We are thankful that he had no adverse reaction to the transfusion.
PAIN MANAGEMENT BUMPED UP
The pain Nicholas is experiencing doesn’t seem to be easing at all, even after ending the constipation this evening with two bowel movements. We really thought he’d start to feel better as his bowels started working a bit, however, that wasn’t the case. His PCA was increased to 39ml, from 26, per hour. Hopefully he will start to feel some relief and perk up some. It is so hard to see and hear him in pain.
FEVER
Nicholas had been fever free for about 36 hours. He spiked another fever this evening around 8:30PM. Tylenol was administered and he doesn’t seem bothered by the fever at all. We sure are, though. It’s so difficult to not know what is going on inside his little body.
GETTING HIM UP MOVING HIS LEGS & ARMS, AND TREAURE HUNT
Creating games with balls and other things for him to use his legs/feet and arms/hands reminded us of the BMT days. And we went on a late night treasure hunt looking for $1 bills—it’s mom & dad’s secret on how they were placed around the hospital (and we’re sure you know too so it’s now your secret as well). It was a short hunt because Nicholas’ stomach was a little uncomfortable sitting in the wheelchair. However, we think that brief time up and about and moments with a changing-scenery provide therapy to Nicholas.
October 14, 2005 Blood Counts:
WBC: 0.1
HGB: 8.6
PLTs: 4
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): NA. Target range: Below 40.
AST (LIVER ENZYME): NA. Target range: Below 60.
___________________________
Thursday, October 13, 2005 11:59 PM CDT
Day 328 since Nicholas’ original leukemia diagnosis
Day plus188 since the BMT
Day 32 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 23 of relapse treatment
ANOTHER FEVER EARLY THIS MORNING, AND THEN AN UNEVENTFUL MEDICAL DAY
Again, after midnight this morning (Thursday) Nicholas came down with a fever and it too went away later in the morning. Although the rest of the day was uneventful medically, Nicholas’ legs are too sore right now to hold him up for more than a minute—his muscles have been sore for over a week because of chemotherapy and he has been laying down for over a week.
And again, a physical therapist spent time working and playing with Nicholas, followed by a Books-A-Live representative sharing interactive computer games with Nicholas.
THIS HOSPITAL STAY IS VERY SCARY, VERY HARD!
We are still waiting for the blood cultures from the last two days to determine what type of bacteria Nicholas is facing in addition to the Gram Negative Rod virus. Specific information on the Gram Negative Rod virus should be known early next week.
Although Nicholas was no longer constipated a couple of days ago, the last couple days he has been constipated again. We know that the chemotherapy medicine, Vincristine, has side effects linked to the stomach issues Nicholas is facing and we are very concerned about what may be going on within Nicholas' stomach and entire body. And, we know that God is encamped around Nicholas and PRAY very, very hard for Nicholas’ cure—in Jesus’ name. We are thankful that there has not been a fever in the last 24 hours. And we PRAY thanking God for you, our friends for being with us in so many ways near and far.
TRYING TO GET HIM UP AND WALKING
Nicholas still has the PCA machine connected allowing pain medicine to be administered whenever he needs it. And, tomorrow we want to continue working to get Nicholas on his feet and walking more. Step-by-step we will get him moving; and prayer-by-prayer we look to our loving God for Nicholas to be healed!
READING TO HIMSELF, AND BEING READ TO BY ONE OF THE NURSES
Tonight, Nicholas read the book “Zach’s Alligator” by Shirley Mozelle out loud (with a little help from reflecting on mom previously reading the book to him so he was able to interpret the story via the pictures on each page). And very late tonight, when one of the nurses came into the room to say hi to Nicholas, he asked her to read “Zach’s Alligator” to him. She did and Nicholas was enjoying eating shrimp tempura mom prepared as the nurse read (pictures in a couple of days).
October 13, 2005 Blood Counts:
WBC: 0.1
HGB: 9.1
PLTs: 18
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): 94. Target range: Below 40.
AST (LIVER ENZYME): 42. Target range: Below 60.
___________________________
Wednesday, October 12, 2005 9:30 PM CDT
Day 327 since Nicholas’ original leukemia diagnosis
Day plus187 since the BMT
Day 31 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 22 of relapse treatment
FEVER, FEVER AND SCARE
After midnight this morning Nicholas came down with a fever and that fever went away later in the morning. Then, this afternoon Nicholas started getting “chilly,” with alarming high heart rate, and shallow breathing. The nurse practitioner was in the room and quickly examined Nicholas and his doctor was called into the room. Several doctors and nurse practitioners in his room were seamlessly in motion assessing Nicholas and actions to take.
Coincidently, blood cultures drawn because of the fever after midnight had just come back as the staff was in motion. One of the cultures showed that Nicholas had a virus: Gram Negative Rod. Nicholas is now receiving a third antibiotic (already two from last Monday’s fever) and will be watched very closely because this virus can negatively impact his blood counts and blood pressure.
UP AND “VERY” ALERT FOR PORTIONS OF THE DAY—SPECIAL VISIT FROM A “FORMULA ONE” RACE CAR DRIVER
While Nicholas battles these fevers and is resting a lot to help regain his strength and energy, there were several brief moments today when he was very alert, having fun, and entertaining. In one breath here is a snapshot of today’s visits: friends, physical therapy staff member who worked with him during the BMT, Formula One race car driver Ryan Justice, Books-A-Live staff member, Barry Bonds autographed painting from radiology staff member who just met Nicholas, and more friends.
Early evening Nicholas was sitting up in bed singing songs from Veggie
Tales, and a little later singing a few of the musical scenes from the Disney movie, The Haunted Mansion.
NOTE ABOUT NEW PICTURES: Remember, because being hospitalized last Monday was not planned we did not bring our camera/PC connections to upload pictures from this hospital stay onto this site as well as the photo albums. We will try to add new pictures in the next few days.
TOMORROW’S PROCEDURES WILL BE POSTPONED
Tomorrow’s procedures in the operating room and other chemotherapy will be postponed because Nicholas’ doctors do not want his blood counts further impacted, along with the Gram Negative Rod virus that impacts the counts.
October 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)
ALT (LIVER ENZYME): NA. Target range: Below 40.
AST (LIVER ENZYME): NA. Target range: Below 60.
___________________________
Tuesday, October 11, 2005 10:50 PM CDT
Day 326 since Nicholas’ original leukemia diagnosis
Day plus186 since the BMT
Day 30 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 21 of relapse treatment
EATING, PAIN MANAGEMENT MACHINE, BURSTS OF ENERGY
Nicholas can now eat almost anything he wants except fatty or spicy foods. Up first was chips and salsa—mild, and this evening he had diced chicken and mashed potatoes over gravy, & green beans.
He did not sleep well last night because he was uncomfortable and had consistent pain in his mid-section. (Remember, the BK Virus in his Bladder takes time, as it has to just run its course). This afternoon a Patient Control Analgesic (PCA) machine was hooked up to Nicholas. The PCA delivers a continuous flow of pain medicine and enables mom, dad, or Nicholas to release a boost of the pain medicine by a push of a button, once every 8 minutes (up to a programmed dosage hourly). NOTE: And with Nicholas not sleeping well at all last night, mom did not get any rest. So dad took over early this morning so mom could get about 5 hours of rest (with a couple of interruptions). This is okay as parents working through all this “leukemia and bone marrow stuff” finds ways to keep going—like others, we have to and we do!
CT Scan performed late today to help identify any other areas that could be the source of the pain Nicholas is experiencing. Awaiting results.
Although he slept or was working through being uncomfortable most of the day, less than one hour after the PCA was hooked up amazingly Nicholas was energized, alert, and expressively feeling better. What a difference being “comfortable” makes. Great timing, Books-A-Live came again today, shortly after the PCA was hooked up, and Nicholas was excited about that interaction. So far this evening he has been more alert in one evening than he has the entire last eight evenings. He enjoyed painting pictures tonight.
ANOTHER PLATELETS TRANSFUSION
The Platelets count today came down to 9; so another Platelets transfusion was administered early afternoon. Frequent blood transfusions can be expected until Nicholas’ bone marrow has recovered. NOTE: These are new phases of the process for us—we were so fortunate to not have experienced frequent transfusions (that is to be expected) during the BMT process.
October 11, 2005 Blood Counts:
WBC: 0.1
HGB: 10.0
PLTs: 9
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work
Note: Below we are revealing the Liver enzymes instead of the Pancreas enzymes that are now in range.
ALT (LIVER ENZYME): 131(down from yesterday). Target range: Below 40.
AST (LIVER ENZYME): 50 (up from yesterday). Target range: Below 60.
___________________________
Monday, October 10, 2005 10:36 PM CDT
Day 325 since Nicholas’ original leukemia diagnosis
Day plus185 since the BMT
Day 29 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 20 of relapse treatment
NICHOLAS KNOWS HIS BODY AND THE DOCTORS WERE “ASTOUNDED”
Remember last week when Nicholas said, “my bladder hurts” as the doctors were working to identify the pain and causes of any infection. All of the blood and urine cultures have come back negative; however, today one of the urine tests came back positive for a BK Virus. So, Nicholas was right because he has been saying it was his bladder that is hurting. The doctor was “astounded” that he knew the location of his bladder to have stated where the pain was coming from.
Nicholas’ immune system has been suppressed with the chemotherapy and immunosuppressive kids are at risk for the BK Virus to surface. Like the CMV virus discussed in the August 18 journal, the BK Virus can lie dormant in anyone’s body. There is no action to take to cure it, it just takes time and the bone marrow producing “T-cells” to push the virus back to being dormant.
Today he looked a lot better than the last several days. Also his skin is actually looking really good (although we are watchful for any GVHD to surface as the Cyclosporine dosage has been reduced).
THESE ARE BLESSINGS FROM ABOVE
A LITTLE BIT OF SALSA, WITH HIS CHIPS
The Pancreas numbers are still in range; and Nicholas is no longer constipated. Although he is still experiencing bladder pain he was able to have a dab of salsa with his baked or fat free chips. Looking at him eat his “salsa chips” was a beautiful sight. We think Nicholas actually felt beautiful inside and out as he sat up looking very alert and vibrant, and started eating/enjoying his 4 chips with salsa.
LIVER ENZYMES ARE COMING DOWN—GREAT
Please see the information below.
PS2 VIDEO GAMES RECENTLY PLAYED
Robots, Sly 3-Honor Among Thieves, Crash Bandicoot-The Wrath Of Cortex, Hulk-Ultimate Destruction
BOOKS RECENTLY READ
Tom-by Tomie dePaola, No Matter What-by Debi Gliori
October 10, 2005 Blood Counts:
WBC: 0.2
HGB: 9.3
PLTs: 44
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work
Note: Below we are revealing the Liver enzymes instead of the Pancreas enzymes that are now in range.
ALT (LIVER ENZYME): 153. Target range: Below 40.
AST (LIVER ENZYME): 48. Target range: Below 60.
___________________________
Sunday, October 9, 2005 11:15 PM CDT
Day 324 since Nicholas’ original leukemia diagnosis
Day plus184 since the BMT
Day 28 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 19 of relapse treatment
PANCREAS NUMBERS IN RANGE, NICHOLAS’ DIET HAS BEEN EXPANDED
Your love is felt and your voices/prayers are being heard—Nicholas’ Pancreas numbers are now in range. We recognize and give thanks to God for his love. Nicholas was able to add chips to his diet today: baked and/or fat free chips. In fact, his diet has been expanded to a Mechanical Soft diet meaning easy to chew foods.
There is power and more so, comfort, in having a choice! Although Nicholas was able to have chips and an expanded diet, he did not want to eat the chips early on in the day, eat lunch (pasta with meat sauce, green beans, pears…), or eat dinner (baked chicken, mashed potatoes with gravy, carrots, peaches…). Nicholas just didn’t feel well enough or have the energy to eat. Later in the evening he had a few chips. Remember, he was getting the nutrients and vitamins needed through TPN via an IV. We PRAY for continued/sustained healing and energy.
STOMACH AREA PAIN CONTINUES, CONCERN WITH LIVER NUMBERS, WATCHING FOR GVHD
Another x-ray of the stomach was taken this afternoon and we are awaiting the assessment. While the Pancreas numbers came into range, the Liver numbers are high out of range (ALT: 236; target range: Below 40. AST: 93; target range:
Below 60.)
Last night Toradol was administered for pain instead of Morphine (for reasons stated in last night’s journal). This morning the doctors stopped this medicine because of an effect it has on Platelets. Nicholas was very uncomfortable again last night and today he was uncomfortable as well. He said, “I just can’t get comfortable.” We are sitting with him different ways, holding him different ways, patting his stomach, applying warm packs, and other medicines are being administered to help get rid of the pain. He was comfortable only in brief pockets of the day, and just tried to sleep most of the time.
With the continued tapering down of Cyclosporine, being watchful for GVHD is certainly an equal priority. Nicholas’ doctors are being proactive and watchful over him—we really see and feel that they “care” and are “working” to cure Nicholas. We PRAY that God guides their minds and continues to direct us.
ANOTHER PLATELETS TRANSFUSION
This morning, Nicholas’ Platelets dropped to 8, the lowest ever! He received a Platelet transfusion before noon. (Platelets count was not determined yesterday.)
PRAYING FOR REMISSION AND SUSTAINED REMISSION
Getting into remission is the first step and as we stated late last week it appears Nicholas is on this track. While sustaining remission is the step after remission, all things can be done through God so we can never really get a head of ourselves through Him. So the following is provided as we ask that you PRAY with us for remission as well as the following: If donor cells come back, will we need another BMT? Through God and His will Nicholas would not need anything to be “healed.” And it is possible that Nicholas would not need any type of BMT if the donor cells come back (re-start production of white blood cells, red blood cells, and platelets) as the leukemia cells are destroyed. WHY ARE WE SAYING THIS WITH OTHER STEPS STILL TO TAKE: Because it is never too early to PRAY, focus PRAYER, and see God’s touch revealing a miracle.
SUPPORTED BY THE MEDICAL STAFF AT ALL LEVELS
Briefly: It is amazing how all levels of the staff engage with us from their hearts as well as their minds—we feel their care and support. And with one of our doctors coming to us today “for us” even more than usual, let us know that she cares and goes beyond just doing a job to help take care of Nicholas.
October 9, 2005 Blood Counts:
WBC: 0.2
HGB: 11.0
PLTs: 8
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work
LIPASE (PANCREAS ENZYME): 35. Target range: Below 50.
AMYLASE (PANCREAS): 80. Target range: Below 140.
___________________________
Saturday, October 8, 2005 11:59 PM CDT
Day 323 since Nicholas’ original leukemia diagnosis
Day plus183 since the BMT
Day 27 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 18 of relapse treatment
PANCREAS ENZYMES’ NUMBERS CONTINUE TO COME DOWN TOWARD THE TARGETED RANGE—WE ARE SO, SO GRATEFUL
Again, we know Nicholas is blessed and we are so grateful. His Pancreas enzymes’ numbers are coming down quickly.
PAIN: Tonight after midnight Nicholas will receive Toradol (because his Kidney levels are in range this medicine can be administered) for the pain instead of Morphine that has been used several times. Aside from other issues with Morphine, Morphine relaxes the bowels further complicating any constipation and Nicholas is constipated. The chemotherapy medicine, Vincristine, that has been administered has a side effect of constipation. We are still awaiting additional urine analyses to help identify the pain in his stomach area.
AFTERNOON NEGOTIATIONS—BY NICHOLAS
“Mom, where is the remote?” Mom was happy to hear this because Nicholas has not been feeling well enough to even watch his favorite shows or play video games. So mom gave the remote to him, and next thing mom knew, a staff member walked into the room asking how she could help. Mom said, oh, Nicholas must have called for you after I gave him the remote. Nicholas then asked the staff member if she could get a nurse. She said, “I am a nurse!” Nicholas said, “I have an idea. Instead of having the salsa chips, how about if I just have the yellow salty chips (referring to Lays)?” Understandably, the nurse told Nicholas that it was not part of his diet.
ABLE TO EAT-WELL SIP-SOMETHING TODAY: Nicholas had chicken broth and a bite of Jell-O this morning, and this evening he had some more chicken broth. Late this afternoon, Nicholas asked his nurse if she would get his doctor. Dad asked why and Nicholas said, “I have a plan.” HIS DIET MIGHT BE EXPANDED TOMORROW—ALTHOUGH WE HIGHLY DOUBT IT WILL BE CHIPS & SALSA: Because the Pancreas enzymes’ numbers are coming down and because he did not have any pain while sipping the broth or afterwards, tomorrow his diet may be expanded.
LEUKEMIA & LYMPHOMA SOCIETY’S LIGHT THE NIGHT WALK
And again Nicholas—and all the kids afflicted with leukemia or lymphoma—are blessed to have so many people demonstrating their love and making a difference by “participating” in an evening walk Sunday (October 9) to celebrate and commemorate the lives of people touched by cancer. Walkers hold illuminated balloons: white for survivors, red for supporters, and light the night with hope. The walkers and those who provide financial contributions are making a difference! They are taking action to help find cures.
The many individuals and groups who are walking in honor of Nicholas warm our hearts. Thank you friends from AAA, Diablo Valley Montessori School in Lafayette, friends we have met on this journey, and friends from Lafayette. Thank you, everyone, who are making a difference directly or indirectly.
SPECIAL NOTE
Mom & dad are trying hard to do everything we can, with God as our director, for Nicholas and it is hard to take care of ourselves and other boys (thankfully they are older). What beautiful surprises for mom on her birthday today. While our hearts are so worn, mom’s heart was warmed by the many well wishes, friends who were able to surprise mom with warm-hearted things, and her boys including Nicholas who showed their love and appreciation. The love, appreciation, and warm-hearted things provided some soothing of the heart—even if just for a few moments.
October 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: When the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work
LIPASE (PANCREAS ENZYME): NA. Target range: Below 50.
AMYLASE (PANCREAS): 87. Target range: Below 140.
___________________________
Friday, October 7, 2005 11:46 PM CDT
Day 322 since Nicholas’ original leukemia diagnosis
Day plus182 since the BMT
Day 26 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 17 of relapse treatment
BLOOD AND URINE ANALYSES REFERENCE ANY INFECTION LINKED TO THE OCTOBER 3 FEVER
Blood and urine analyses so far have come back negative (good) showing no infection that may have caused the October 3 fever. Nicholas is still having pain in his stomach area, and we know that he has Pancreatitis from the E. Coli Asparaginase as “journaled,” so two other urinary tests are being performed.
PAIN AND NICHOLAS APPARENTLY HAS JUST BEEN WORKING THROUGH IT
Nicholas has continually shown all of us—including you—his strength since the November 19, 2004 diagnosis. We just learned about the pain felt from having Pancreatitis and not surprisingly, Nicholas has been working through it with rather mild pain medicine. Understanding the pain, Nicholas will be given Morphine when needed to make him comfortable. He certainly does not need to deal with any more pain or impact on his life!
I WANT TO GO HOME, EAT AT MY HOUSE, SLEEP IN MY BED, AND YELL IF I WANT TO
As you know, because of the Pancreatitis Nicholas has now not been able to eat for 2 ½ days. The pain mom & dad feel, hearing his cries for food, to eat something, cuts through our hearts—truly cuts through our hearts. With Nicholas reaching up out of his bed, looking into our eyes, placing his head on our shoulders, wrapping his arms around our necks, and crying out to eat, hurts! We understand why (as “journaled”)!
Nicholas is hurting to be home so he can just be a kid, just do the things that kids do in the yard, around the house, and in his room. He wants to be home so he can just eat when he wants to. HE HAS NOT LOST HIS SPIRIT OR HIS PEOPLE SKILLS: Late afternoon when a nurse came into his room, Nicholas in a crying voice asked her if he could eat. The nurse understands all that Nicholas has been going through regarding the Pancreatitis and understands the management of it. However, after talking with his doctor, the nurse told Nicholas that the doctor said he could have one medicine cup of ice chips to see if his stomach can tolerate it (one medicine cup is 1 ounce). Nicholas said, “I have a plan! How about I have a couple ice chips, then some salsa chips, then ice chips, then salsa chips. Then ice chips, ice chips, ice chips; salsa chips, salsa chips, salsa chips?” (Salsa chips, referring to chips with salsa.)
We are so THANKFUL that the Pancreas enzyme numbers are coming down, getting closer to the targeted range.
Thinking about Nicholas’ gut, liver, and skin associated with GVHD as the Cyclosporine continues to be tapered down, we are being very, very watchful for any GVHD. And we are so THANKFUL Nicholas has not been vomiting or having diarrhea with all that is going on inside of him. THANKFUL for God shielding Nicholas on this journey!
PLATELETS
So you know Nicholas’ Platelets had been dropping and way out of range. You know that when they dropped to 11, he received a Platelet transfusion (October 3), and then on they climbed up to 101 (October 5), although still low out of range. So in case you are wondering now that you see the Platelets today dropped to 42, please know that it is not uncommon to happen this way. Not uncommon because the life of the Platelets transfused may not have been a lot (I guess you could think of it like “shelf life”). And remember, Nicholas’ marrow has not revved up yet to produce blood cells, including Platelets.
A POEM: MY BEAUTIFUL SON
(From unknown author and shared on other CaringBridge sites)
My Beautiful Son
I watch you playing,
Without a care.
It's hard to believe,
The cancer is there.
You look so bright,
So happy and well.
If someone new met you,
They couldn't tell.
Your strength is amazing,
Your courage so strong.
You've fought this disease,
So well for so long.
It's from your strength,
that I draw mine.
I know you will come through this,
It'll just take time.
Carry on smiling,
I will too.
Through the hard times,
I'll carry you.
You are my world,
The air that I breathe.
I know in my heart,
You'll never leave.
Keep strong my love,
The battle has begun,
But with your strength,
It will be won.
October 7, 2005 Blood Counts:
WBC: 0.3
HGB: 10.4
PLTs: 42
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: When the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work
LIPASE (PANCREAS ENZYME): 136. Target range: Below 50.
AMYLASE (PANCREAS): NA. Target range: Below 140.
___________________________
Thursday, October 6, 2005 11:31 PM CDT
Day 321 since Nicholas’ original leukemia diagnosis
Day plus181 since the BMT
Day 25 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 16 of relapse treatment
GOOD NEWS
The bone marrow is coming back and no leukemic cells were detected in the preliminary review from today’s bone marrow aspirate. And words that prompted mom to say, “I will sleep better tonight!” were, “It looks like he is going into remission—we are not there yet; however, this is the first step and a good sign.” In fact, our doctor then said he would sleep better tonight as well. And again we are blessed, blessed to have caring doctors, nurse practitioners, nurses, and other medical staff. And we have been so fortunate to have experienced these blessings at both, CHO and LPCH.
Remission will be when:
A) Nicholas has a normal bone marrow
B) ANC above 1,000
C) Normal WBC
D) Platelets above 100
PANCREATITIS, NEUTROPENIC, HOSPITALIZATION
More somewhat good news; the Amylase (Pancreas enzyme) has come down dramatically although it is still high out of range (please see below). However, Nicholas still cannot eat because we have to ensure his Pancreas is healing and we do not want to irritate it as it continues to heal. So again, today Nicholas is so upset that he can’t eat. All of the feelings Nicholas and mom & dad talked about in yesterday’s journal were magnified and more intense today—as it has now been over 36 hours since he last ate.
And because Nicholas is still neutropenic (discussed yesterday), he is expected to be in the hospital for at least 10-plus days. The doctors need to see Monocytes, “a type of white blood cell that assists in fighting infection. The Monocyte, along with the Neutrophil, are the two major microbe-eating and killing cells in the blood.” They need to see the bone marrow revving up to make new cells, including Platelets.
CHEMOTHERAPY TONIGHT
Tonight, sometime after 11:00 pm (PST), Nicholas will receive Vincristine and Daunorubicin via his Broviac (central line). Please PRAY with us that Nicholas is shielded from the Vincristine side effects that can cause bone pain, impact leg muscles… Remember the body pain and arms/legs pain over the last 10 days that Nicholas experienced?—we PRAY that he is shielded.
THE IMMEDIATE PLANS
STEP 1: Nicholas is expected to be in remission in 2-3 weeks. There are 12 more days of this current treatment regimen.
STEP 2: Planning for no complications. Note: Medically, Nicholas is more at risk for treatment related complications because of all that his body has been through with the treatment after the original diagnosis, the pre-bone marrow regimen, the BMT, and the relapse treatment.
STEP 3: It will be 3-8 weeks before any type of bone marrow transplant—we’ll discuss later, however, something novel needs to be determined.
FRIENDS AND FUN TODAY
Although the procedures today took up about half of the day, the rest of the day was filled with friends and fun. First, many nurses/nurse practitioners visited with Nicholas on the way to the procedure and after the procedure. When Nicholas was leaving the recovery room to go to his room, family friends and KJ met him. You know the yellow “LIVESTRONG” wristbands, well KJ and his family had wristbands made for Nicholas that are blue with a “NICHOLAS!” imprint. Once again, we know that we are blessed. So know, we are wearing the yellow one and Nicholas’ blue one on one wrist. I know you can see the truth and the power of these words together, “LIVESTRONG,” “NICHOLAS!” on one wrist that symbolizes Nicholas—thank God.
And a representative from Books-A-Live came to Nicholas and he was kept busy and challenged for a while having fun with computer programs/games.
Actually, mom had two specific visits from a long-time friend and friend we met since we have been at LPCH. These visits are so good for mom; and they are good for dad—seeing mom able to relatively relax for a few moments with conversation and friendship during these awful, awful moments and this horrible journey.
October 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Awaiting today’s bone marrow aspirate results
LIPASE (PANCREAS ENZYME): NA. Target range: Below 50.
AMYLASE (PANCREAS ENZYME: 283 down from 585 yesterday. Target range:140
___________________________
Wednesday, October 5, 2005 11:27 PM CDT
Day 320 since Nicholas’ original leukemia diagnosis
Day plus180 since the BMT
Day 24 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 15 of relapse treatment
UNABLE TO EAT—NOT BECAUSE HE DOESN’T WANT TO
“Mommy & daddy, I really want to eat…” As a parent, these moments throughout the day were very, very hard. Hearing Nicholas crying out for food and seeing the tears run down his face as he was just looking to us to let him eat. This morning’s lab results revealed that two Pancreas enzyme levels were extremely high out of range:
Lipase was above 200. Target range: below 50.
Amylase was 585. Target range: Below 140.
As a result, the Pancreas needs some rest so as of this morning and for the next couple of days he will not be able to eat. Nicholas can only have sips of water. Tonight he started receiving TPN (remember this during the BMT phase, it is like “liquid food/nutrients in a bag”). However, it certainly did not satisfy his craving to “eat.” Usually, there are no long-term implications because of this Pancreas issue. CAUSE: Most likely the cause is from the E. Coli Asparaginase shots as impact to the Pancreas is one of its side effects. At this point in time, we will not continue administering these shots; there have been 3 times that Nicholas has received this medicine since the relapse and he was scheduled to receive it 3 more times.
RED BLOOD TRANSFUSION
Nicholas’ Hemoglobin (HGB) level dropped to 7.3 shortly after midnight (at 12:30 am October 5) so later this morning (around 10:00 am) he received a Red
Blood transfusion. Note: Remember two days ago he received a Platelet transfusion and that level has climbed to 101. This evening Nicholas was more alert and energetic—not surprising since the Red Blood cells carry Hemoglobin, which binds oxygen and carries it throughout the body. However, about every 20 minutes he was upset because he couldn’t eat. Nicholas said, “I’m not feeling so good right now because I can’t eat.”
PROCEDURES TOMORROW (THURSDAY)
Our doctors are expecting that the bone marrow aspirate results reveal no blasts in the spinal fluid. Also, Nicholas will receive chemotherapy (same as last week) in his spinal fluid. No other chemotherapy will be administered tomorrow, as the doctors want to assess Nicholas’ overall numbers/chemistry from tomorrow’s lab work.
WE WILL BE IN THE HOSPITAL FOR AWHILE
With Nicholas’ blood count numbers so low and the fact that he is neutropenic (decrease below normal in the concentration of neutrophils, a type of white blood cell—no ability to fight infection), he will be in LPCH until they rise to targeted levels.
LEUKEMIA & LYMPHOMA SOCIETY VISIT
Eight representatives from the leukemia & lymphoma society visited Nicholas in his hospital room. Although Nicholas doesn’t need any more toys, understandably they brought gifts including something for Halloween. What do you think the Halloween gift was? It was a, a, a, okay, it was a “scary” looking mask.
NOTE: Pictures during this hospital stay will be posted when we return home.
October 5, 2005 Blood Counts:
WBC: 0.2
HGB: 7.3
PLTs: 101
ANC: NA, because some information is not available when the WBC is below 0.6
BLASTS: Current percentage will be determined from tomorrow’s bone marrow aspirate (when the WBC is below 0.6 some levels/information is not available through the daily analysis of lab work)
LIPASE (PANCREAS ENZYME): Above 200. Target range: Below 50.
AMYLASE (PANCREAS ENZYME): 585. Target range: Below 140.
___________________________
Tuesday, October 4, 2005 11:59 PM CDT
Day 319 since Nicholas’ original leukemia diagnosis
Day plus179 since the BMT
Day 23 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 14 of relapse treatment
WE ARE ALL VERY TIRED—SNAPSHOT OF THE DAY:
Nicholas took several naps throughout the day and was certainly more comfortable today (most comfortable he has been in a week).
His lower stomach is still hurting him, and Oxybutynin has been administered to manage any bladder spasms.
Ativan was administered periodically and it helped to ease the stomach pain and overall made him more comfortable.
Part of the urine culture has been analyzed and it came back negative, awaiting remaining cultures. Urine culture and analysis is being performed to help assess the stomach pain.
The blood cultures that have been analyzed have come back negative (good), awaiting remaining cultures. Because of yesterday’s fever, the cultures will help assess any infection.
Nicholas is on standby (added to the schedule) to have multiple procedures early tomorrow evening, including in the operating room for a bone marrow aspirate, and chemotherapy into his spinal fluid. If these procedures cannot be performed tomorrow, the target will be Thursday. It is possible that Nicholas will have to remain in the hospital through the weekend until his blood counts recover.
This evening Nicholas’ former Montessori School teacher (Ms. Shirley) came by delivering cards from students, and spent time reading to him. Nicholas was playing host to Ms. Shirley and asked to have one of his favorite snacks to be shared—it was chips & salsa.
October 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Current percentage will be determined with tomorrow’s labs
LACTIC DEHYDROGENASE (LDH): Current level will be determined with tomorrow’s labs
___________________________
Monday, October 3, 2005 11:59 PM CDT
Day 318 since Nicholas’ original leukemia diagnosis
Day plus178 since the BMT
Day 22 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 13 of relapse treatment
NICHOLAS WAS ADMITTED INTO LPCH
While in the Day Hospital at LPCH receiving outpatient treatment, a few issues developed. And a couple of the issues were reasons for the staff to take immediate action before admitting Nicholas into the hospital as an inpatient.
A) First, Nicholas was admitted into the hospital because at 5:15 PM during a routine check of vital signs that were being conducted throughout the day, he had
Friday, September 30, 2005 11:59 PM CDT
Day 315 since Nicholas’ original leukemia diagnosis
Day plus175 since the BMT
Day 19 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 10 of relapse treatment
STILL PAIN IN HIS BODY (LEGS AND ARMS)
Nicholas’ body is still experiencing pain when touching his legs and arms or when he is moved. However, his mind is still strong. So after Nicholas and KJ discussed seeing each other today, Nicholas generated a little more strength to move about. Actually, their plans were for us to pick KJ up on our way home from the RMH so KJ could visit at our home. Mom & dad love the interaction between these two guys who have amazing spirit and compassion. By the way, Nicholas actually walked to the car from the RMH—this was the longest distance he has walked in the last three days!
TWO NEW PHOTOS UNDER “VIEW PHOTOS”
1) Listening and singing to music on the way home today
2) Relaxing in the family room with KJ
SO NICE TO BE HOME
Simply stated, and we’re sure known by most, being home is comforting. It brings a smile on our face and warmth to our hearts. We are hoping to be home for the weekend and two days next week.
September 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: NA
LACTIC DEHYDROGENASE (LDH): NA
CYCLOSPORINE: NA
___________________________
Thursday, September 29, 2005 9:38 PM CDT
Day 314 since Nicholas’ original leukemia diagnosis
Day plus174 since the BMT
Day 18 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 9 of relapse treatment
TODAY’S PROCEDURES WENT WELL in the Operating Room (lumbar puncture and chemotherapy into Nicholas’ spinal fluid: IT Methotrexate, ARA-C, and Hydra cortisone) and Day Hospital (Vincristine and Daunrobucin).
And the E. Coli Asparaginase shots in the thighs were able to be administered while he was in the operating room and under anesthesia so he did not feel them at all. Again, because of the previous reactions to Asparaginase, Nicholas was pre-medicated and an emergency reaction kit was at his side all day. We will administer Benadryl every 4 hours for 24 hours to guard against reaction. So it will be another long night for mom & dad—and that’s okay.
Nicholas’ Platelets came down to 21 and although close to being at 20 (which is when a Platelet transfusion would take place), a decision was made not to do a transfusion today or tomorrow. We will have to closely monitor Nicholas over the weekend for any signs of bleeding.
BLASTS STILL GOING DOWN and it is so comforting to know at this point that the cancer is being destroyed by the chemotherapy. Today, Blasts were down to 4 percent.
NICHOLAS’ BODY IS STILL SORE TODAY; he was able to move just a little on his own without much discomfort. And just the slightest movement causes Nicholas a lot of pain. With Vincristine contributing to the body pain and with Vincristine administered today, we will be watchful for any related pain. We will administer pain medicine (Tylenol) if necessary.
NEXT WEEK’S procedures will be similar to this week. On Monday Nicholas will be in the Day Hospital for lab work, Cytogam, and E. Coli Asparaginase shots in his thighs. He will not be under anesthesia so we will continue to PRAY for an uneventful procedure. However, lab work will determine if we can administer these shots on Monday. And lab work will determine if a Platelet transfusion is needed on Monday.
Next Thursday there will be lab work. Next Friday Nicholas will be in the Operating Room for a bone marrow aspirate as well as a lumbar puncture with chemotherapy into his spinal fluid, and more E. Coli Asparaginase shots (because he will be in the operating room they will be administer while he is under anesthesia).
GOING HOME FRIDAY MORNING and we will be home for the weekend.
September 29, 2005 Blood Counts:
WBC: 2.7
HGB: 10.7
PLTs: 21
ANC: 1,080
BLASTS: 4 percent.
LACTIC DEHYDROGENASE (LDH): Level not analyzed today. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
CYCLOSPORINE: Level not analyzed today.
___________________________
Wednesday, September 28, 2005 11:59 PM CDT
Day 313 since Nicholas’ original leukemia diagnosis
Day plus173 since the BMT
Day 17 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 8 of relapse treatment
LAB WORK LOOKS GOOD
Overall lab work looks good. There are dozens of levels closely followed and acted upon; however, following is an update on key levels moving in the right direction:
BLASTS are down from 27 percent to 5 percent—And we praise God!
LDH is down from 1,057 to 734.
PLATELETS, although very low out of range, they went up from 23 to 25 so a Platelet transfusion was not needed today.
We know the critical steps of getting Nicholas into remission, then keeping him in remission, and then the steps for a different type of bone marrow transplant. (Other than what we have said on previous journals since the relapse, we’ll explain more about the transplant later.) Although we are only approaching success on the first step, we are still getting ready to celebrate. Celebrate because Nicholas continues to simply be amazingly spirited, full of joy, and continually loving with everyone around him. In fact, we celebrate everyday because Nicholas deserves celebration daily! The warmth of the sunshine, the glow of the moon, and the sparkle of the stars are more precious to us because of Nicholas and so many kids like him. And we celebrate because of the amazing things about Nicholas that continue to surprise so many people every day.
NICHOLAS IS STILL EXTREMELY SORE
Nicholas’ legs and arms are very, very sore. He had to be carried throughout the day to do even common things like going to the bathroom. When he did try to walk, he had to “shuffle” his feet to lessen the pain in his legs. Again, the Vincristine and steroids can cause this effect—however, here too we PRAY for God’s shielding of Nicholas and for His glorious hands to heal him!
Today was one of the most uncomfortable full days for Nicholas as even getting into or turning over in bed was extremely challenging for him. He understands the importance of letting us know how he is feeling. At one point tonight he wanted to let us know how he was feeling and wanted to make sure we didn’t take him to the hospital based on how he was feeling. WHAT NICHOLAS SAID handling this situation: “I don’t feel ‘hospitally,’ I just don’t feel good.”
PRAYING FOR COMFORT AND UNEVENTFUL PROCEDURES TOMORROW
Tomorrow (Thursday) will be a long, full day of procedures. From the operating room for a lumbar puncture and chemotherapy into his spinal fluid, to chemotherapy afterwards into his blood stream via his Broviac (central line). And possibly the two E. Coli Asparaginase shots into his thighs. The doctors are assessing the possibility of administering the shots while he is under anesthetics in the operating room.
And PRAYING for a miracle for all to further witness and give glory to God—the complete healing and cure can be now, in Jesus’ name!
I KNOW WE KEEP SAYING IT, HOWEVER, WE KEEP FEELING IT: Thank you, thank you, thank you for being with Nicholas, mom & dad, and our other boys!
September 28, 2005 Blood Counts:
WBC: 4.2
HGB: 11.3
PLTs: 25
ANC: 2,100
BLASTS: 5 percent.
LACTIC DEHYDROGENASE (LDH): 734. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
CYCLOSPORINE: 218.
___________________________
Tuesday, September 27, 2005 11:49 PM CDT
Day 312 since Nicholas’ original leukemia diagnosis
Day plus172 since the BMT
Day 16 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 7 of relapse treatment
IMPACT OF THIS AWFUL DISEASE ON OTHERS IS NOTHING COMPARED TO THE IMPACT ON NICHOLAS (and other kids in Nicholas’ situation)
There is no other way of thinking about the impact this awful disease is having on anyone, without first knowing that the impact on Nicholas is life-threatening and overrides any impact on mom & dad or his brothers. Putting it in perspective, the impact on mom & dad is insignificant, although real and hard hitting. From this perspective, we recognize the importance of taking care of ourselves to take care of Nicholas. However, the impact this awful disease has on us physically and mentally is challenging. And no matter how challenging, we will be up and out front on this fight with the strength our Father provides.
Last night (Monday) we administered Benadryl every 4 hours to guard against a reaction to the E. Coli Asparaginase shots, so dad got very little sleep administering the medicine trying to let mom get some rest for more than a few hours. Mom continues to prepare medicines, administer medicines, read & search to better advocate for Nicholas. The typical time for rest becomes the typical time to read & search information to be better prepared to get through “all this leukemia and bone marrow stuff.”
NO CHEMOTHERAPY TREATMENT TODAY; HOWEVER, NICHOLAS WAS IN PAIN
There was no chemotherapy treatment today; however morning and night we still had many medicines to prepare and administer. And throughout the day Nicholas experienced consistent pain primarily in his arms and legs (most likely from the Vincristine as stated yesterday).
HOME FOR THE DAY (TUESDAY) BEFORE TOMORROW’S LAB WORK
We left the RMH this afternoon and we are spending the night at home, returning to LPCH tomorrow (Wednesday) for lab work. Cylcosporine and Platelets are specific results the doctors will assess; all results will help to determine the continued chemotherapy plan. With Platelets, Nicholas may have to receive a Platelet transfusion tomorrow, as stated in yesterday’s journal.
AWAY FROM HOME THE NEXT FEW DAYS
After lab work tomorrow and possibly a Platelet transfusion, we will stay at the RMH. Then on Thursday Nicholas will be back at LPCH for procedures/chemotherapy all day, as stated in yesterday’s journal. We expect to be home Friday afternoon and the weekend.
September 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Current percentage will be determined with tomorrow’s labs
LACTIC DEHYDROGENASE (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
CYCLOSPORINE: Current level will be determined with tomorrow’s labs.
___________________________
Monday, September 26, 2005 11:45 PM CDT
Day 311 since Nicholas’ original leukemia diagnosis
Day plus171 since the BMT
Day 15 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
Day 6 of relapse treatment
BELOW IS A SNAPSHOT OF THE DAY (As always, we are so fortunate to have you with us on this awful journey. Fortunate because you provide comfort through your loving thoughts, prayers, and/or guest book entries. And as always, we truly hope these journals are a help to you, help to focus on the things that Nicholas is experiencing enabling your thoughts, prayers, and/or guest book entries to help Nicholas.)
E.COLI ASPARAGINASE SHOTS: Blood samples sent to Los Angeles for an asparaginase analysis reveals that Nicholas has antibodies against this medicine. This means Nicholas’ body fights off 90 percent of this medicine when it is administered. Even considering the reactions experienced, our doctors determined that because this is an important medicine toward remission, Nicholas would receive two shots—one in both thighs simultaneously like he did in November 2004.
The day at LPCH for a check up and these shots began at 11:30 this morning. Nicholas was told about having to have two shots and he was more than brave while the nurses prepared him (pre-medicated to guard against a reaction, and a numbing cream on his thighs).
NICHOLAS ASKED to count to three, once again, to cue the shots. He asked the nurses to 1) apply the band-aids immediately after the shots, 2) “may I scream after the shots?” and 3) “I want my dad to carry me afterwards.” The nurses were very accommodating and patient as Nicholas prepared himself for the shots, while mom was lovingly holding him. Moments before 5:00 this evening the shots were administered and as of 11:45 tonight he is doing just fine. We are administering Benadryl every 4 hours, for 24 hours, to further guard against a reaction (yes, Benadryl is an effective guard against the seriousness of the potential reaction).
Later this week our doctors will have more information to determine if we should continue with these shots that originally were going to be administered twice a week for 3 weeks (one shot versus two shots).
WHAT’S NEXT: On Wednesday more lab work will be performed to check various levels toward helping to confirm the treatment to get Nicholas into remission, as well as help manage the following:
Cyclosporine: Remember, ever since the BMT we have not been able to keep the Cyclosporine in range for more than two days in a row. It fluctuated back and forth from being too high, to too low. This is why we had three medicines (Cyclosporine, Prednisone, and Cellcept) to guard against the GVHD. Once again, high and low out of range is what we are experiencing now.
Platelets: Remember, over the last two months Nicholas’ Platelets have been dropping and are now approaching a very low level (20) that will require a Platelet transfusion. With Nicholas overall leukemia treatment since the November 19, 2004 diagnosis, he has “only” received three Platelet transfusions and six Red Blood Cell transfusions.
On Thursday Nicholas will go back to the operating room for another Lumbar Puncture with chemotherapy (IT Methotrexate, ARA-C, and a steroid) injected into the spinal fluid, and two other chemotherapy medicines into his blood stream.
NICHOLAS’ NOTE TODAY: Before the E. Coli Asparaginase shots today, Nicholas wrote out his dinner request. He wrote, “Chicken, shrimp tempura, and egg-rice.” We use every opportunity to keep Nicholas focused on learning and mom & dad are so happy two see him always learning, not just wanting to learn. He thoroughly loves to write, and keep track of money.
FEELING THE EFFECTS OF CHEMOTHERAPY: Nicholas' body is very sore, mainly his arms and legs. This is believed to be a side effect of the chemotherapy medicine, Vincristine, that he received last Wednesday night. He is scheduled to receive Vincristine again this coming Thursday.
TOUCHING, LOVING VISIT: Recently, a BMT patient at LPCH relapsed and went to New York for a cord blood transplant. At LPCH before going to New York, Nicholas enjoyed playing with him and they had special moments playing with Pokemon cards. Parents dealing with this awful disease become close with other parents very quickly and really need the conversations and sharing of experiences. The parents of this 7-year old are amazing and were so loving to Nicholas, and giving of information in our conversations.
The beautiful 7-year old boy drew his last breath on August 20, 2005. While we did not know him deeply, we experienced the following at the LPCH that was written for his memorial service. He "gave infinite joy to his parents, tenderness to his little brother, playfulness to his friends, and unending love to all who knew him." Today, his mother visited Nicholas and mom & dad at the RMH. The mother of the 7-year old had been thinking about the recent journal regarding Nicholas giving one of his stuffed bears to a little boy who was crying at CHO. Today she delivered a huge stuffed-angelic-looking bear to Nicholas along with a large gift bag containing various books and toys. We PRAY for loving comfort to this family and the joy that this beautiful 7-year old will forever provide to all who knew him or touched by his story.
BLASTS AND LACTIC DEHYDROGENASE ARE CONTINUALLY COMING DOWN—please see below and refer to previous journals for the trending down.
September 26, 2005 Blood Counts:
WBC: 5.8
HGB: 9.8
PLTs: 23
ANC: 1,914
BLASTS: 27
Lactic Dehydrogenase (LDH): 1,057. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
Cyclosporine level: 186.
___________________________
Sunday, September 25, 2005 11:59 PM CDT
Day 310 since Nicholas’ original leukemia diagnosis
Day plus170 since the BMT
Day 14 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
VERY NICE DAY AT HOME
Friends, friends, friends, and Nicholas’ brothers made up the day, feeding our hearts with fun and laughter. And very nice conversations with friends momentarily eased the excruciating pain in mom & dad’s hearts and throughout our bodies. We know that our pain is nothing compared to what Nicholas is going through, and know that we must do EVERYTHING that we can do see Nicholas through it all. Everything beginning with God!
Also, a comforting prayer with friends today helped us in knowing our Father’s love is guiding Nicholas’ journey (and our journey).
BACK AT THE RMH TONIGHT
Tomorrow Nicholas will receive his second E. Coli Asparaginase shot in his thigh. This medicine scares us because of the reactions Nicholas has experienced and we are praying, knowing that God’s love is guiding ALL aspects of Nicholas’ journey so there should not be anything to fear—feeling God’s presence with us everywhere.
And back at the RMH tonight means being away from our other boys. Here too, we pray for guidance as we listen to His voice enabling us to parent from afar. We pray our other boys continually hear and feel our love—although delivered and expressed in somewhat unfamiliar ways to them (because mom & dad are away and at other times very focused on Nicholas’ cure).
NOTES
HAIR CUT: Most likely you have noticed a lot of hair on Nicholas. Tonight, we trimmed it and he sure did like the feeling, and the look. Because we do not have our home PC with us at the RMH, pictures with his haircut will be uploaded to this site and his photo album sometime during the week. However, along with the new home page photo above, clicking on View Photos you will see three other new pictures.
FOOTBALL AND BASEBALL: Oh, Nicholas did not watch any football today and when one of his brothers turned on a football game today in the family room, Nicholas responded that he could go into the living room to watch the game—Nicholas was watching a Disney show called, That’s So Raven. And Nicholas, as well as his brothers likes the SF Giants so it will be fun for them if the Giants can sweep the upcoming 4 games against the San Diego Padres.
September 25, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Current percentage will be determined with tomorrow’s labs
Lactic Dehydrogenase (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
Cyclosporine level: Current level will be determined with tomorrow’s labs.
___________________________
Saturday, September 24, 2005 11:59 PM CDT
Day 309 since Nicholas’ original leukemia diagnosis
Day plus169 since the BMT
Day 13 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
DISCHARGED AT 6:00 PM: Nicholas had a fun, full day from morning, noon, and night with family and friends at LPCH and then at the RMH. And visits by other nurses Nicholas met at LPCH during his BMT stay were definitely a good thing today. And medically, it was an un-eventful day—another good thing. Leaving the hospital, Nicholas was jogging (carefully because his Platelets are so low) oust of the hospital doors and screaming the screaming sounds you hear from “kids at play” that is truly music for your heart. Tonight before bed he was watching a favorite Disney show and during the opening of the show, you know when the theme song is playing, Nicholas was singing the song and dancing to the beat. And mom & dad smiled as Nicholas was warming our hearts.
HOME TOMORROW FOR SEVERAL HOURS: We will take Nicholas home tomorrow for the afternoon to just be “home,” spend time with his brothers, and planned time to spend with a couple former Diablo Valley Montessori School classmates.
WHAT NICHOLAS SAID DURING HIS PRAYER OVER DINNER: “…thank you for a wonderful day, and God thank you for letting me go home—sort of. Amen.” Nicholas was referring to being at the RMH this evening and at least out of the hospital.
WHAT NICHOLAS WROTE TO MOM: In addition to mom & dad teaching Nicholas math using money, mom has been doing a great job teaching Nicholas to read, spell, and write. As mom was preparing Nicholas’ night medicines, Nicholas wrote a note and gave it to her. Referring to his feelings on having to take the medicines tonight, the note read: “No, mom.” Nicholas was just using what he has been learning and being funny; he took his medicines.
UPCOMING PROCEDURES: On Monday Nicholas will be back at LPCH for a second E. Coli Asparaginase shot. Then we expect to be home Tuesday night & Wednesday day before returning back to the RMH Wednesday night for Thursday Lumbar Puncture with chemotherapy in his spinal fluid, and chemotherapy in Nicholas’ blood.
ALTHOUGH WE HAVE SAID THIS MANY TIMES, WE ARE BLESSED: We are blessed and we feel it. We are blessed to have Nicholas be so amazing the way he is handling this “leukemia and bone marrow stuff.” We are blessed to have a family that shows/provides so much love and support for Nicholas, mom & dad, and our other boys. We are blessed to have friends (and many that we have never met in person) to more than express love for Nicholas and our family—friends that provide proactive and unconditional love. Note: Nurses and doctors at CHO and LPCH, we include you as friends as you continually collaborate and work to be active, caring hospitals. Not just say, “We are a caring hospital.”
September 24, 2005 Blood Counts:
WBC: 8.8
HGB: 9.9
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 3,168
BLASTS: 51 percent
Lactic Dehydrogenase (LDH): 1,816. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
Cyclosporine level: 338, from high out of range at 338 to low out of range at 162 and back up to 338.
___________________________
Friday, September 23, 2005 3:22 PM CDT
Day 308 since Nicholas’ original leukemia diagnosis
Day plus168 since the BMT
Day 12 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)
***UPDATE #3, September 24, 12:45 AM
Shortly after midnight Nicholas complained of being cold and was chilly. His heart rate was elevated and this began to remind us of the November 2004 reaction although that time the reaction was within 20 minutes of the PEG Asparaginase shots, not 6 hours... Benedryl and Hydra-cortisone was administered and the nurses/doctors further examined Nicholas. His lungs were clear, and after the Benadryl his breathing was okay and he was not chilly. He will be closely watched over the night.
***UPDATE #2, 11:00PM***
A) E. Coli Asparaginase was administered at 6:00 PM without any reaction—we are thankful for God’s shielding. Remember, Nicholas was heavily pre-medicated and he was hoping to be asleep when it would be administered. So, part of his negotiating when the shot would happen, naturally included questions by him about “why can’t you let me go back to sleep first?” and “why do I have to take this medicine?”
The nurses were very patient as Nicholas prepared himself for the shot and when he was counting to three, which at that point he would be ready for the shot, whenever dad or one of the nurses would move to get ready, Nicholas would notice the movement and start counting over. After one, two, and being ready to say three, he would say “thr” “thr” and then said to everyone “I’ll say it.” After the shot mom closely held him and hummed a tune she would hum when we had to give him G-CSF shots in his arm, sometimes 5 nights in a row before the BMT. He then slept un-eventful for about two hours—this was a blessing.
These shots will probably be administered two times per week, for three weeks. Well, at least he will get plenty of negotiating practice.
B) After mom gives Nicholas a shower, the routine is for mom to change his Broviac dressing (dressing covering the central line going into his chest), dad to change the bedding, and for dad to clean & dry the shower/bath tub. Well, tonight there was an inadvertent change. While dad was cleaning the shower, several nurses came rushing into the room—dad inadvertently pulled the shower/bath tub emergency cord so the nurses quickly responded. They were surprised and dad was surprised as dad turned thinking they were all just coming to visit Nicholas.
***UPDATE #1***
EARLY UPDATE—ADDITIONAL CHEMOTHERAPY STARTING TODAY VERSUS NEXT WEEK
NOTE: Because this is an early update for today, please refer to yesterday’s journal for those details.
TODAY: The Daunorubicin and E. Coli Asparaginase are now planned for today. The staff is fully aware of the reaction Nicholas had in November 2004 to the PEG Asparaginase so in addition to being pre-medicated, equipment and staff will be on hand and closely monitoring Nicholas’ vitals and overall condition with administration of the E. Coli Asparaginase.
PRAYING: We need God’s continued “shielding” of Nicholas and PRAY that he does not have a reaction to the E. Coli Asparaginase. ALSO, this medicine is administered by an intra-muscular shot into Nicholas' thigh muscle (last time it was shot into both thighs, this time one thigh). It is so painful to prepare for and see happening. We will hold, love, and comfort Nicholas.
NICHOLAS: Nicholas looks great, really. Great Spirit, great interaction with the staff and great is the staff’s interaction with Nicholas. He is active and having fun—we want to feed joy into Nicholas every moment!
September 23, 2005 Blood Counts:
WBC: 6.7
HGB: 12.6
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 1,541
BLASTS: 56 percent
Lactic Dehydrogenase (LDH): 2,043. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
Cyclosporine level: 162 early this morning, so low and out of range after just one missed dose (last night). Dropped from yesterday being high and out of range at 338.
___________________________
Thursday, September 22, 2005 10:53 PM CDT
Day 307 since Nicholas’ original leukemia diagnosis
Day plus167 since the BMT
Day 11 of the relapse—and gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!
ANOTHER DAY OF SAD NEWS
Results of yesterday’s lumbar puncture shows that there is leukemia in Nicholas’ central nervous system (CNS, spinal fluid), as well as in his bone marrow. This means that medically Nicholas will need to undergo cranial and spinal radiation after the current chemotherapy regimen being administered/developed. We have been blessed, yes blessed, that Nicholas’ joy has not been taken away. In previous journal entries we talked about God’s “shielding” of Nicholas from harm during the earlier chemotherapy, fractionated-total-body radiation the week before the BMT, during the BMT, etc. And we ask for our loving God’s continued “shielding” of Nicholas. We are reminded…”The joy that none can take away is mine, I walk with God today.”
IMMEDIATE ACTION: Starting next Wednesday (September 28, 2005) Nicholas will go back to the operating room for a lumbar puncture with three medicines injected into his spinal fluid: IT Methotrexate, ARA-C, and a steroid. This will take place once per week over the next 4 to 5 weeks. It is projected that it will take two lumbar punctures (two weeks) to eliminate the leukemia in the CNS.
THEN WHAT: In two weeks Nicholas will have another bone marrow aspirate and spinal tap to check progress.
CONTINUED CHEMOTHERAPY
Remember the Asparaginase and Daunorubicin we talked about yesterday, this coming Monday Nicholas will receive the Asparaginase and next Wednesday he will receive the Daunorubicin. Through the collaboration of doctors within LPCH, CHO, and others the best medical option for Nicholas is being developed.
NICHOLAS
Believe it, he had a fun day all in his room. And he had a beautiful nap, at least to mom & dad it was beautiful as we watched him sleep while he was cuddling a teddy bear and holding a dollar in his hand. (Over the last couple of months he has gained an affinity for money). He looks to find ways to earn more, and we have used his affinity to help teach him lessons such as math as well as the value of things.
Nicholas had another special visit from a clown that he met while at the RMH, and mom & dad along with Nicholas had a special visit from dad’s top executive/friend from work.
September 22, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198
BLASTS: 76 percent
LACTIC DEHYDROGENASE (LDH): 2,213. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.
CYCLOSPORINE LEVEL: 338, high and out of range (Tonight’s and tomorrow morning's doses will not be administered)
___________________________
Wednesday, September 21, 2005 11:36 PM CDT
Day plus166 since the BMT
Day 306 since Nicholas’ original leukemia diagnosis
And sadly now it is day 10 of the relapse--and glad to know through God that we are on the path of healing and cure!
FIRST DAY OF CHEMOTHERAPY WITH THE RELAPSE
But first, here is what Nicholas was doing in the Exam room before any of today's procedures: He was "humming," humming a song that he had just created while drawing pots of gold under a rainbow. Nicholas' humming was music to mom & dad's hearts and seemingly the humming generated words of love and joy that coated our hearts with joy.
In the operating room, Nicholas received his first chemotherapy with the relapse, in the form of IT Methotrexate in the spinal fluid during another bone marrow aspirate. Normally, Nicholas wakes up very quickly in the recovery room; however, today mom & dad had to wake him up about 55 minutes later.
Speaking of music (so to speak, because the following was soothing to our hearts), Nicholas was greeted in his hospital room by several staff members from the hospital all night long, including physical therapist and a clown who frequents the RMH as well as LPCH. It was amazing to witness the parade of doctors, nurse practitioners, nurses, nurse assistants, and so on who came in to see Nicholas again. And it was a wonderful feeling hearing that many of them have been staying in touch with Nicholas' journey through this CaringBridge website.
Tonight at 9:00 he received a second chemotherapy medicine, Vincristine. And after we have been tapering Nicholas down on the Prednisone (remember, it helping to manage the GVHD over the last several months), tonight as part of the medicines to get Nicholas back into remission, it was administered at a high dose that will continue for about a month.
A fourth medicine, PEG Asparaginase (the one that he had a bad respiratory reaction to in November 2004) is being considered because it is expected to be a significant help toward remission. After the first of three planned doses when Nicholas began treatment in November, we stopped giving this to Nicholas. Our LPCH and CHO doctors have discussed this and with other research feel that with pre-medication Nicholas will be fine receiving this medicine. This is still being considered along with conversations with St. Jude who may have a similar medicine called Erwinia that was made in England and stopped being produced because of the availability of the PEG Asparaginase. The Erwinia, with like benefits was helpful to those patients who had a reaction to the PEG.
A fifth medicine, Daunorubicin, is another one considered. However, because of its high cardio-toxicity we are holding off on it right now.
FIRST STEP IS GETTING NICHOLAS INTO REMISSION
While getting Nicholas into remission is probably obvious to all, based on Nicholas' situation (like recently receiving the BMT) this by itself is a very, very, very serious challenge. Although we are working on next steps such as keeping him in remission, and some type of bone marrow transplant, the reality of the challenge hurts so much in understanding that "it" is truly a very, very, very difficult task for Nicholas to overcome.
The success of whatever type of transplant is not projected to be high-it will be a very high risk if we can get to the step of a transplant. AND WE KNOW THAT GOD IS THE ORCHESTRATOR OF NICHOLAS'LIFE and through God this relapse situation is in His hands. God has the world, in many respects, watching and we believe that He has just placed Nicholas' situation on an even higher platform for His work to be witnessed. And the glory to be His. Because we believe in Jesus' name that Nicholas is cured. Oh Father, it hurts so bad to see and hear Nicholas going through this journey. And Father, we are grateful that you are a loving God holding Nicholas in your hands and helping mom & dad to understand as we witness your love.
SNAP-SHOT OF SOME LAB WORK
WBC: It is now high at 19.2. It was 88 at original diagnosis on November 19, 2004. However, it has been going up since the relapse.
LDH: Remember, this is what raised a concern that led to revealing that Nicholas was relapsing. It is now at 2,364 and the target range is below 300 or below 500. This is a liver marker revealing cell turnover and tumor activity.
Cyclosporine: In range at 299
Blasts: Increased to 83 percent. Now that we began chemotherapy we are PRAYING to get Nicholas into remission and the Blasts to go down to 0.
NICHOLAS
Nicholas is truly our sunshine and using a word a nurse used tonight to describe how so many staff and non-staff members are attracted to him, Nicholas is a "magnet" within our family. He has always brought our family closer together and is our guiding light. He continues to shine so brightly even during the darkest moments of our lives as we reach out, read, and work hard to do the right things for Nicholas on this awful, painful to us, journey that has taken a terrible turn-relapse.
September 21, 2005 Blood Counts:
WBC: 19.2
HGB: 11.0
PLTs: 54
ANC: 1,920
BLASTS: 83 percent
Cyclosporine level: 299
___________________________
Tuesday, September 20, 2005 11:59 PM CDT
Day plus165 since the BMT
Day 305 since Nicholas’ original leukemia diagnosis
And sadly now it is day 9 of the relapse
It is so hard to realize what Nicholas is experiencing, what mom and dad are experiencing, what our other boys are experiencing, as Nicholas continues this journey and what we’re about to experience beginning tomorrow. Nicholas has gone through so much drama, trauma, and experiences for a lifetime. We pray that we are directed to make the right decisions tomorrow as we begin chemotherapy. We truly feel that Nicholas is healed through God and with everything within us want to see and hear that he is healed and cured.
Nicholas was thankful to have a full day with KJ, who came to visit again: video games, mock Power Ranger fighting, talking and various other activities. We are blessed that Nicholas’ joy, enthusiasm and fun nature is so vibrant.
Nicholas, mom and dad settled into the RMH late tonight preparing for early morning labs at LPCH and admission.
September 20, 2005 Blood Counts:
WBC: N/A
HGB: N/A
PLTs: N/A
ANC: N/A
BLASTS: Will update with Wednesday’s labs
___________________________
Monday, September 19, 2005 11:28 PM CDT
Day plus164 since the BMT
Day 304 since Nicholas’ original leukemia diagnosis
And sadly now it is day 8 of the relapse
RESULTS OF CONSULTATION AT STANFORD-LPCH
Discussing the “worst” prognosis, this is the “worst” situation a parent may have to confront. It’s an awful, critically serious situation that devastates your heart and mind. Loving Nicholas, leaning on our loving God, we are fighting every moment and anything in the way of Nicholas’ cure.
Our doctors at Children’s Hospital Oakland and Stanford-Lucile Packard Children’s Hospital have showed their collaborative support. They are making the challenge of originally being treated at one hospital (CHO) and transplanted at another (LPCH), seem so transparent while we are determining next steps to get Nicholas into remission. However, GVHD associated with the BMT will be a factor to manage, as chemotherapy treatment will begin to get Nicholas into remission. So, we are having LPCH’s oncologist lead this phase of chemotherapy treatment and partner with our LPCH BMT doctor—in a side-by-side like approach. Nicholas and mom & dad know this doctor as we engaged with him during post-BMT "rounds" by the hospital staff. While this perhaps could be managed with two hospitals, every nuance experience with Nicholas since the BMT and every moment moving forward will be critical with the element of “time” being a significant factor.
TWO STEPS: 1) Make the leukemia go away—achieving remission, and 2) A second BMT of some sort—there are a few opinions out there and this will have to be narrowed to the one that the team of doctors leveraging other sources assess as the best option to cure Nicholas.
QUICK UPDATES
BLASTS: Today’s lab work revealed that Blasts are now 76 percent, up from 31 percent yesterday.
CHIMERISM: Remember the DNA chimerism test that monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells.
1) The first one on May 11 revealed that overall 95 percent were donor cells—great start.
2) In June overall it was 98 percent.
3) In July the T-cells dropped to 90 percent.
4) Mid-July the test was performed again revealing that the T-cells came back up, to 96 percent, and overall 98-99 percent.
5) BAD NEWS: Now the overall percentage has plummeted to 5 percent donor cells.
WHAT’S NEXT: RONALD MCDONALD HOUSE AND ADMISSION INTO LPCH (CRITICAL TOXICITY ISSUES BECAUSE OF THE BMT)
Remember, we have reduced the Prednisone to trigger GVL. One of the critical issues to manage will be the toxicity levels of chemotherapy because the BMT effect on Nicholas. And beginning Wednesday, Nicholas will start the chemotherapy phase of getting him into remission. Tomorrow night Nicholas, mom & dad will be at the RMH. Wednesday morning we will be at LPCH for lab work and some ongoing treatment before being admitted into LPCH for chemotherapy treatment. We are expecting to be in the hospital through Friday. And we recognize this could change based on the response Nicholas’ body has to the treatment.
We PRAY & PRAY for God’s guiding of the doctors minds and hands and clarity of mind for mom & dad to make the right decisions. We continually express our love for God, and recognize that His will is needed for the miracle of Nicholas’ continued life.
PREPARING FOR THE STEP AFTER NEXT
We PRAY that Nicholas quickly (or just gets) into remission. Then the second bone marrow transplant will be needed. Based on the relapse and the apparent aggressiveness of the leukemia a different approach to the transplant will be taken. Our LPCH BMT doctor is connecting with St. Jude Hospital in Tennessee and the University of Minnesota who both specialize in the different approach that will be needed in an attempt to cure Nicholas. There is so much risk with the approaches that may be taken, AND the risk apparently is the best medical approach to take to cure Nicholas.
Nicholas has an awful challenge in front of him, and the risks of the chemotherapy treatment as well as the different approach for a second bone marrow transplant has us so afraid and constantly praying and crying for our loving God’s guidance, shielding, protection, and cure!
Connecting with St. Jude and the University of Minnesota paves the way for Nicholas to go to one of these hospitals after we get him into remission and he is medically able to withstand a second transplant.
We ask that we all keep demanding and fighting to find a cure for these life threatening diseases, for all the kids who are afflicted with them.
September 19, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198
BLASTS: 76 percent
___________________________
Sunday, September 18, 2005 11:38 PM CDT
Day plus163 since the BMT
Day 303 since Nicholas’ original leukemia diagnosis
And sadly now it is day 7 of the relapse
ANOTHER NICE DAY; HOWEVER, TONIGHT NICHOLAS' STOMACH WAS HURTING
Nice relaxing day with family and friends who made long drives to visit, nice phone calls, and nice guestbook entries—thank you, everyone for your hearts and prayers.
Late tonight, Nicholas’ stomach began to hurt him. We recognize that the planned reduction of the Prednisone can be triggering some GVHD and PRAY for God’s continued shielding of Nicholas and directing of this journey for healing. (Please refer to the September 16 journal.)
IT’S SUNDAY AND NICHOLAS WAS DOING SCHOOLWORK
Remember, just yesterday Nicholas’ home-school teacher was setting up at our home to begin kindergarten instruction for him. And today, mom got Nicholas started on schoolwork—he worked on rhymes. Nicholas was enjoying it and got to the point where mom left him alone with his work and he just kept on going and going.
TOMORROW (MONDAY)
We will be at Stanford-LPCH for consultations about the current reduction of immunosuppressive medicines and GVHD and praying the balance becomes just right for GVL. Also, the discussion—and we pray—to determine a plan to begin administering the new medicine, Clofarabine, to get Nicholas into remission. (Please refer to the September 16 journal.)
Mom & dad are anxious for the discussions, and we are nervous about the discussions. We PRAY for God’s imparting of wisdom to the doctors and for our clear minds to make the right decisions.
September 18, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Current results will be available tomorrow (Monday)
___________________________
Sunday, September 17, 2005 11:59 PM CDT
Day plus162 since the BMT
Day 302 since Nicholas’ original leukemia diagnosis
And sadly now it is day 6 of the relapse
SNAP-SHOT OF A NICE DAY IN THE MIDST OF THIS AWFUL TIME WITH THE RELAPSE
1) KJ visited and spent several hours with Nicholas. They played video games, indoor basketball, outdoor basketball—really, and football with three of Nicholas’ cousins (Stefan, Natalia, and Rene). What a beautiful sight to see KJ and Nicholas (recent transplant patients) so active. Of course, these activities were very tame because of their Broviacs as well as Nicholas’ Platelets being so low. However, these guys were “playing and having fun.”
2) Cousin Charles drove up from the San Diego area and joined in on the fun with his sister Rene and his two kids Stefan and Natalia. Seeing Nicholas so vibrant and active, Stefan said to his dad, “Dad, I thought Nicholas was sick?” What a blessing to have Nicholas be able to be “playing and having fun.” And what a lesson through God for others to see Nicholas be able to be “playing and having fun.”
3) Theresa, Kaeli’s mom, drove up to visit Nicholas and mom. We are blessed again to have such a warm, loving friendship that is truly from the heart—thank you Theresa. (You do remember Kaeli, right? Kaeli is another BMT patient we met a LPCH and had lots of fun with at the RMH.)
4) Nicholas’ home-school teacher came by today getting set up. We are focused on Nicholas’ cure and focused on him continuing to thrive.
5) The blessings are pouring in from the guestbook entries and those powerful thoughts and prayers from all of you, as well as through another wonderful meal cooked for us in our home—Soha, we appreciate you and your family so much. And Reda, you and your company (thank you Louie) demonstrated such love for Nicholas through creating the code for Nicholas’ Song of Love to be playing in the background of this website.
6) NO PAIN NOTICED TODAY: Mom & dad did not notice Nicholas going through any pain today—amazing!
7) STOPPING TO REST PERIODICALLY: Nicholas was tired periodically throughout the day and he was quick to stop and rest. Sometimes, curling up on his bean-bag in his room for a quick nap; sitting on a bench outside; or taking turns curling up with mom, dad, one of his brothers, and Theresa this evening while watching a movie.
8) A DRIVE TO THE BAY IS PLANNED FOR TOMORROW: Nicholas has asked to go by a favorite spot on the Bay to watch the waves roll in and have a picnic—all in the back of the Expedition with the third seat out. These times have really become one of his favorites. Nicholas especially likes it when we do it in the evening so it gets dark and like a campout. At these times, he likes reading books under a flashlight.
NOTE: Click on View Photos to see pictures from today, and the third album under Links below for pictures while in the hospital the last few days and other updated pictures (at the end of the album).
September 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
BLASTS: Blood draw tomorrow morning (Sunday)
___________________________
Friday, September 16, 2005 11:59 PM CDT
Day plus161 since the BMT
Day 301 since Nicholas' original leukemia diagnosis
And sadly now it is Day 5 of the relapse
DISCHARGED FROM CHO
Nicholas was discharged this afternoon from CHO and the good news is that we enjoyed another homecoming—what a warm, comforting feeling.
HERE IS THE DEVELOPING PLAN
1) WHAT: Following the withholding of last night’s Prednisone, beginning today we are only administering 3mg of Prednisone one time per day versus the 6mg twice per day that was being administered. PURPOSE: Again, we are now TRYING to generate GVHD and the GVL effect to fight the cancer in Nicholas’ bone marrow.
2) WHAT: Monday morning we are meeting with Nicholas’ BMT doctor and the other LPCH doctor who has used the new Clofarabine medicine stated in yesterday’s journal. PURPOSE: Further discuss the reducing of the immunosuppressive medicines (like the Prednisone stated), the Clofarabine medicine’s use on Nicholas to get him into remission, and along with our CHO doctor discuss steps 3 and 4 below.
3) WHAT: Explore and determine the best option around to keep Nicholas in remission. PURPOSE: To put Nicholas into a position to be cured.
4) WHAT: Explore and determine the best option around toward curing Nicholas. PURPOSE: To cure Nicholas.
OTHER EFFORTS TO FIND A CURE
Once again, we are so fortunate for the care and love received from friends (as well as our families). In this case, mom met a patient’s mother while at LPCH who with her son has been through some very, very trying times. They have been pushing and driving for a cure of their own, and this morning mom received a telephone call from Tennessee and it was the boy’s mother. She had a lot of extremely helpful information for us. Her son has successfully received the Clofarabine medicine and had other positive information about its use.
She also shared transportation information that would be extremely helpful if there was a need for us to quickly get Nicholas to another place for treatment based on the nature of this cancer. NOTE: We are very thankful for the way our CHO and LPCH doctors have been collaborating with each other and other doctors/hospitals!
CARING AND WATCHING OVER NICHOLAS
Along with administering and tracking medicines, we are pushing Nicholas to drink significantly more than normal to push out any breakdown of cancer cells as the GVHD/GVL effects come into play. Tracking his liquid intake is important because if he is not drinking along with urinating enough, he will have to go on IV fluids.
And we are being so watchful for GVHD indicators.
NICHOLAS HAD A GOOD DAY
Being home, of course, made today a good day. Nicholas enjoyed ice cream from an ice cream truck, talking with our neighbors, talking on the phone with K.J. (he is planning to come see Nicholas tomorrow—Saturday), playing with Joey who came to visit, playing with his brothers, receiving a homemade dinner that was cooked by our family friend Cyndi—at our home, and cuddling up through out the night.
September 16, 2005 Blood Counts:
WBC: 8.7
HGB: 10.9
PLTs: 46
ANC: 1,305
BLAST INFORMATION
September 16, 2005 BLASTS: 43percent
September 14, 2005 BLASTS: 29percent
Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.
1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)
2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.
___________________________
Thursday, September 15, 2005 11:46 PM CDT
Day plus160
Day 300 since Nicholas' original leukemia diagnosis
And sadly now it is Day 4 of the relapse
NICHOLAS
Last night Nicholas' right hip was sore and today both of his legs have been bothering him. It appears to be the effect of the new leukemia. You probably have some idea how Nicholas responded to us asking about his legs, after we noticed that he was walking "gingerly" on both of them. Nicholas said, "I can still walk. See, they don't hurt me that much." He is so amazing, day-after-day and after all the old and new things associated with this awful disease he still wants us to not worry about him. Yes, he is amazing and we truly believe he is on this earth sharing love as only a loving child could show and do.
Today in the playroom at CHO, a patient undergoing chemotherapy was vomitting. Nicholas turned to the boy and used words and gestures to try to comfort & assure the boy that he would be okay.
And this evening when walking by another patient's room, Nicholas heard the little boy crying and pulled mom aside. Nicholas whispered, "Mom, can I let Dillon use one of my Teddy-Bears to help him not cry. Because he is crying in there." Nicholas then got a Teddy-Bear and knowing that he shouldn't go into Dillon's room stood by the door. The doctor then approached Nicholas and Nicholas said, "Here Dillon, you can have this" and the doctor delivered it to Dillon. And Dillon stopped crying.
NOW WHAT
Our CHO doctor (original treatment) has conferred with Stanford-LPCH doctor (BMT) and other doctors/hospitals and the common theme is:
1) Intense chemotherapy is not a viable option due to the immaturity of Nicholas' marrow (the BMT was just 160 days ago)
2) It is way too early to do another BMT based on the toxicity of the pre-BMT regimen and everything that Nicholas' body has been going through as a result of the BMT being just 160 days ago
3) Withhold some of the immunosuppressive medicines (Cyclosporine, Prednisone, and Cellcept) to trigger GVHD that also has a GVL effect, which means graft versus leukemia effect, meaning the new marrow would see any leukemia in the body as foreign and fight it. The down part of this approach is that Nicholas will have some GVHD (remember the gut, skin, and liver issues), and we PRAY that the GVHD would be just the "right' amount to get the job done. However, the GVL alone will not be enough to get rid of the leukemia so some form of chemotherapy will have to be implemented. Also, remember the "shielding" through God that we have talked about. Here too, we PRAY that Nicholas will be shielded during this process. There have been a lot of side effects expected, and a lot of them Nicholas did not experience or not to the degree expected-shielding does happen!
The third theme is the first intervention we are expecting to take, followed by some form of chemotherapy. Tomorrow we will be going to LPCH to consult with the doctors in preparation for overall treatment decisions with our CHO doctors.
WHAT IS HAPPENING TONIGHT
Based on the third theme above, tonight we withheld the Prednisone dose. As a result, the doctors want to ensure an optimum intake of fluid level as well as output of fluid. This is important to manage any breakdown of leukemia cells-although it is not expected to start happening this fast.
WHAT CHEMOTHERAPY
Remember, yesterday we talked about a new leukemia chemotherapy medicine that, coincidently, a doctor from St. Jude Hospital gave a talk about early this week in the Bay Area. Following up on this we learned that one of the doctors at LPCH previously practiced at St. Jude and in fact he has recently used the new medicine called Clofarabine.
Our CHO doctor and the LPCH doctor who has used Clofarabine will collaborate on this possibility; and we will meet with this LPCH doctor either tomorrow (Friday) or on Monday.
WHAT WE NEED
We need a miracle! We need our loving God to heal Nicholas, to heal Nicholas and cure him from this awful disease. We need Nicholas to not have to experience any more side effects or pain associated with the side effects. We do not want to see Nicholas go through any more trauma. All we need is God and your prayers.
September 15, 2005 Blood Counts
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
September 14, 2005 Blood Counts
WBC: 13.3
HGB: 11.8
PLTs: 66
ANC: 2,527*
September 14, 2005 BLASTS: 29percent
Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.
1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)
2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.
___________________________
Wednesday, September 14, 2005 2:37 PM CDT
Day plus159 (Day 299 since Nicholas' leukemia diagnosis)
UPDATE #2
FIRST PHASE OF TODAY'S BONE MARROW ASPIRATE RESULTS-NOT GOOD
Today's marrow analysis looks very similar to yesterday's peripheral results-Nicholas has relapsed meaning cancer is back. This is very, very serious because the relapse is so soon after the April 7, 2005 bone marrow transplant. It appears to be a very aggressive type of cancer. Thankfully, it is not as far as long as it could have been; 50-percent of the cells are cancerous meaning, on the positive side, Nicholas has "reserves" to combat/guard against infection and the effects of chemotherapy. Another positive way to look at this is Nicholas has a lot of good cells.
MORE CHEMOTHERAPY
Yes, this means we will need to go back to chemotherapy. However, we will have a battle to fight on this issue because they have never seen such a dramatic change in the appearance of the leukemia. (It does not appear to look like the ALL leukemia diagnosed on November 19, 2004.) And some of the protocols that could be considered would not fit Nicholas because the relapse was so soon after the BMT.
FIRST STEP
We need to get Nicholas back into remission. Today, Nicholas will begin to undergo a lot of baseline tests, including an echo-cardiogram to understand the condition of the heart because one of the medicines that may be used can affect the heart.
PREPARATION FOR THE FIRST STEP
Our CHO and Stanford-LPCH doctors are collaborating to jointly approach the process to get Nicholas back into remission. Over the next two days our CHO doctor will be putting information together to secure opinions from other doctors/hospitals, as well, on the approach to take because of the relapse so soon and aggressiveness of the cancer.
Just last night, a doctor from St. Jude held a conference in the Bay Area regarding a new drug that, perhaps, may be something that could make a difference for Nicholas. Also, because Nicholas responded so well to the first chemotherapy treatment plan, it will be considered. Remember, originally Nicholas went into remission within 8 days of being diagnosed.
Also, there is lead transplant doctor in Vancouver that we will reach out to for consultation.
So, the preparation for the first step requires a lot of collaboration, information sharing, and of course the pre-first step is turning to our loving God. A miracle can certainly happen!
NEXT STEPS
By this weekend the doctors need to be prepared with input from other doctors/hospitals regarding a protocol to follow or a process to follow. So by this weekend a decision needs to be made to get Nicholas into remission, and that intervention needs to immediately follow.
YOUR CONTINUED PRAYERS AND VOICES
Thank you for all your prayers and voices directing love toward Nicholas. Your prayers and voices can and will be heard-and love will flow from you to Nicholas.
UPDATE #1
BONE MARROW
The bone marrow aspirate and biopsy went smoothly. The doctor was able to pull out a lot of marrow and large sample for the biopsy. Also, they were able to use very small band-aids so we are thinking that Nicholas should not be in the type of pain he experienced last Friday and over the weekend.
ADMITTED INTO CHO
Admitted into CHO at 12:35 p.m., room number 5309. Nicholas did not want to be admitted. This was the first time that he actually "cried" about being admitted (although it is certainly okay to cry about being admitted at any time). Once we got to his room, saw familiar nurses and the play room, he was okay. Just okay, as it is not home.
NOW WHAT
We will be talking with the doctors shortly regarding the immediate plan, recognizing that the results from the bone marrow aspirate will not be known until tomorrow.
Also, marrow sample will be used for Cytogenetics (remember, these results mid-December 2004 revealed Hypodiploid and was the reason for the BMT, and a sample is being sent for Chimerism (remember, determines the percentage of donor cells at work).
WE ARE PRAYING FOR HEALING AND A CURE
Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, however, will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.
We confess the Word of God abides in Nicholas Colby Gilbert and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirt even to the joints and marrow of his bones. Your Word is medication and life to his flesh, for the law of the Spirit of life operates in him.
___________________________
Tuesday, September 13, 2005 4:22 PM CDT
Day plus158
NOTE: SONG OF LOVE
If your speakers were on when you just opened Nicholas’ CaringBridge site, you are listening to Nicholas’ song of love in the background. Please refer to the September 7, 2005 journal for the words to the song and information about the caring organization/people who created Nicholas’ song. Profile-type information on Nicholas was provided enabling Nicholas’ song of love to be created.
QUICK UPDATE:
RESULTS OF TODAY’S LAB WORK
The peripheral blood work today at CHO reveals blasts (malignant cells) like Stanford saw yesterday. The blasts do not appear to be like those when Nicholas was first diagnosed—something is going on. At this time the doctors do not know what to make of it, and said to be prepared for the worst.
NEXT STEPS
Tomorrow morning Nicholas will go to the operating room for another bone marrow aspirate and biopsy of the marrow. We were told to be ready for Nicholas to be admitted into CHO tomorrow after the procedures. It will then be at least 24 hours for initial bone marrow aspirate results.
NICHOLAS: HIS JOY, HIS LOVE, HIS PASSION
Nicholas’ approach to all of "this stuff" has been amazing—here we are using the “amazing” word again—truly amazing. The joy he brings to our hearts through being incredibly aware and the thoughtful things that he says. The love he continually shows for others (he called K.J.—you remember K.J., Nicholas’ RMH neighbor—yesterday, twice today, and at the close of those conversations Nicholas said, “I love you” which is typical in his relationship with others. Others that are younger than Nicholas, about the same age, and older.
The passion for displaying joy and loving everything around him touches the hearts of family, friends, and new acquaintances. We are so fortunate to be blessed with Nicholas, and so thankful our loving God is in operation. His omnipotence, omniscience, and omnipresence are at work and we call out to God in thanks. And we ask for understanding, and we ask for Nicholas to continually be with us in full strength—healed from disease and able to continually express all that God asks.
September 13, 2005 Blood Counts:
WBC: 9.8 (up from yesterday’s 5.5)
HGB: 11.6
PLTs: 50
ANC: 1,156
___________________________
Monday, September 12, 2005 5:44 PM CDT
Day plus157 (Day 297 since Nicholas’ leukemia diagnosis)
UPDATE #2, at 9:55 PM CDT:
LAB WORK AT CHO AND PREPARED FOR NICHOLAS TO BE ADMITTED INTO CHO
Tomorrow (Tuesday) morning we will be at CHO for peripheral blood draw to analyze for blasts, and full chemical panel lab work. We were asked to be ready for Nicholas to be admitted into CHO following this blood work. And another bone marrow aspirate will be the next step. After that, we do not yet know what is next.
Friday’s bone marrow aspirate result is “reading out as not leukemia;” however, we were given two possible explanations:
1) …was in the process of a relapse and over the weekend it picked up and spilled over into the peripheral blood
2) “Focal” relapse, meaning that although the bone marrow aspirate sample taken was “reading out as not leukemia,” leukemia is present somewhere in the marrow. Therefore, another bone marrow aspirate will be performed and samples drawn from multiple sites.
MIRACLES DO HAPPEN AND WE PRAY THAT NICHOLAS’ AMAZING WORK CAN CONTINUALLY TOUCH LIVES
And we PRAY that Nicholas is cured, healed of any type of life-threatening disease because he truly blesses lives with his God-given love and touch.
UPDATE #1:
WE ARE SO FRIGHTENED, SCARED
OH FATHER, WE HAVE ALWAYS NEEDED YOU AND WE NEED YOU, WE NEED YOU NOW!
EVERYONE, PLEASE, PLEASE POWERFULLY PRAY WITH US NOW AND STRONGLY—THE DOCTORS SEE BLASTS IN NICHOLAS’ BLOOD WORK
We just returned from Stanford and received a call that the peripheral blood work (from his central line in Nicholas’ chest, Broviac) drawn this morning reveals blasts—the leukemia is coming back.
We have not received Friday’s bone marrow aspirate results from Children’s Hospital Oakland yet, and our Stanford doctors have talked with them. Our Children’s Hospital Oakland doctor should be calling any moment, and we have so many questions.
PLEASE, PLEASE PRAY WITH US and loudly cry out for help for Nicholas. Nicholas has done everything right, he is amazing, he is loving, he is so caring, and he is everything to everybody! We need our Father God, and we need your prayers.
September 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, September 11, 2005 11:56 PM CDT
Day plus156
APPOINTMENT TOMORROW @ STANFORD-LUCILE PACKARD CHILDREN’S HOSPITAL
We are anxious to receive the final results of Friday’s bone marrow aspirate, discuss the high LDH numbers (please refer to the September 8 journal), discuss the very low Platelets level, and an overall conversation about next steps. And draw labs to find out current levels. These things are planned to take place tomorrow (Monday).
And we are, once again, so grateful and give thanks to God for the way Nicholas navigates all of the things in his path to a cure. And grateful for your continued prayers—I remember the very tough times over the last 296 days, and your prayers/voices clearly being heard and answered! Nicholas’ joy is a testament.
FUN DAY, BACK NOT AS SORE ALTHOUGH PAIN STILL LIMITS MOVEMENT
What a fun day: playing outside, football, baseball, and with a foam-ring device that shoot the rings horizontal or vertical up to 30 feet. These rings are about 2 inches in diameter and we made up lots of games, for lots of fun. Nicholas especially enjoyed one game where he was like a combination super hero/matrix character contorting his body to avoid the foam rings from hitting him.
Wow, although Barry Bonds is returning to action tomorrow, Nicholas was in full swing—literally—today and hitting some homeruns. And football today, well we watched about 15 minutes on TV and enjoyed ourselves hiking the ball, running routes (well, walking routes for Nicholas), and tossing the ball. And to top this fun day off, the twin girls from next door came over and the three of them had a lot of indoor fun together.
BECAUSE OF HIS LOW PLATELETS ON FRIDAY, we were very cautious with his activities. Limiting him so that he was not jumping, running, or bumping…
September 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, September 10, 2005 11:59 PM CDT
Day plus155 (Day 295 since Nicholas’ leukemia diagnosis)
GOOD DAY, HOWEVER, NICHOLAS’ BACK IS SORE FROM THE BONE MARROW ASPIRATE
Nicholas had a good day, even though he was slowed by not wanting to move too much because his back was sore from the bone marrow aspirate. The previous bone marrow aspirates did not slow him up at all, as after those he was up and about, running and playing. However, today, the area of his back where the aspirate was performed was still bleeding slightly because of the very, very low Platelets level.
Nicholas did help, somewhat, dad wash the car and when not helping he was sitting down outside watching and talking with dad and neighbors. (First time we washed the car together in over 6 months—we enjoy the fun of playing with the water as we wash the cars.)
Calling grandma Charlotte and grandpa Floyd was fun for Nicholas as he was guessing what they were doing, receiving grandma Eva’s call was a treat for Nicholas to hear her wishes for him, always talking with aunt Peggy is fast paced because Nicholas rapidly talks about the things that he likes, and calling his former Ronald McDonald House mate, K.J., was definitely a hi-light for Nicholas this morning. Nicholas really enjoys staying in touch with K.J.
Mom and Nicholas spent time together on the computer and this too was a hi-light for him. However, every moment with mom is truly a hi-light for Nicholas—mom is Nicholas’ warm, comforting, and beautiful star that brighten his world!
Fun at the dining table is always a hi-light for Nicholas with his brothers. The words and expressions Nicholas uses are an amazing combination of what he hears from mom & dad, his brothers, the hospital staff, and of course the other things that he hears, reads, or sees. And it is Nicholas’ awareness and understanding of the use of words that is truly amazing—he hears and applies words and expressions so appropriately and at times surprises us because of the high level of their use.
PRAYING AND PUSHING FOR NICHOLAS’ CURE, AND AN OVERALL CURE FOR THESE LIFE-THREATENING DISEASES
It’s just awful to experience this leukemia disease and the BMT process, in terms of it being a hope for a cure and not an immediate cure. It’s awful constantly having to focus on moment-by-moment care and we are thankful to find ways to be able to focus on these moments. We are, of course, thankful for the hope—praying, giving thanks that Nicholas is God’s perfect son.
And we pray for cures for all of these life-threatening diseases. We keep thinking about the babies and kids afflicted with these diseases that just hit, fall on their lives. It’s so sad to see and experience.
September 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, September 9, 2005 6:57 PM CDT
Day plus154
QUICK UPDATE ON TODAY’S UNEXPECTED PROCEDURE (referring to yesterday’s journal)
BONE MARROW ASPIRATE: Final results of the bone marrow aspirate are not in; however, our CHO doctor said it looked good in that it did not present itself as a relapse (leukemia). This provides some comfort right now and on Monday when we are at Stanford-LPCH, our CHO doctor will be talking with our LPCH doctor with the final results (including a discussion on the last bone marrow aspirate performed at LPCH to assess how things were showing up then and how things are showing up now). Thank You, Lord!
The marrow did reveal a lot of red blood cell activity that could be caused by some of the medicines—not indicative of relapse (leukemia).
PLATELETS: During today’s procedure, Nicholas was bleeding more than usual so heavier bandages were used. Lab work was analyzed to re-check his Platelets because of the bleeding. Today’s Platelet level is 45, down from the 58 yesterday, and still very low out of range (target range 150-400).
Our CHO and LPCH doctors talked today about the Platelet issue and tonight we will not be administering the Gancyclovir that could be causing the Platelet drop. And, of course, the Gancyclovir is part of the intervention relative to the CMV that Nicholas had on August 18, 2005—so Gancyclovir is administered to help eliminate the CMV and on the other hand it could be negatively impacting the Platelets (another type of roller coaster effect Nicholas is experiencing).
On Monday a decision will be made as to what to do about the Gancyclovir that currently is being administered 5 times per week.
VITAMIN K & CLOTTING FACTORS: As a quick gut check, our CHO doctor ordered additional blood work to check Nicholas’ vitamin K level and his blood clotting factors to make sure nothing is going on there. We should hear on Monday as well.
We are to watch for any signs of bleeding or bruising cropping up and will need to get to the hospital for further follow up should anything arise prior to our visit at Stanford on Monday.
NICHOLAS: He is simply amazing—the way he is navigating through all of this medical stuff in terms of maintaining high spirits; being aware of what is happening around him and still caring so much about others being happy; loving people, places, and the things that he does while on this roller coaster effect of the leukemia and bone marrow process.
September 9, 2005 Blood Counts:
WBC: 5.1
HGB: 11.0
PLTs: 45
ANC: NA
___________________________
Thursday, September 8, 2005 6:39 PM CDT
Day plus153
VERY EMOTIONAL AND SAD DAY—WRETCHED WORDS STILL PIERCING OUR HEARTS
Today as Nicholas was receiving IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly affects immune compromised patients) we heard the calm yet wretched words from our doctor, “I need to tell you something.” Mom & dad both recalled those words back in mid-December 2004 (a month after the leukemia diagnosis) when the results of those words were that Nicholas’ leukemia had a rare chromosome abnormality labeled as Hypodiploidy. And Nicholas’ prognosis was dramatically changed—our best chance for his cure was going straight to a BMT.
Remember, August 18, 2005 was the day Nicholas was admitted into CHO for about 12 hours to receive treatment because we had just learned that he was positive and relative numbers were high for Cytomegalovirus (CMV). Since then Nicholas’ Lactic Dehydrogenase (LDH) numbers have been going up and dramatically high out of range. The LDH is linked to the liver function. The target range is 100-500 and over the last few weeks they have been: 786, 1144, 1058, 1271, 1297. These high LDH numbers coupled with the trending down of Nicholas’ Platelets, which today are down to 58 (target range 150-400), is cause for concern. Our CHO doctors have conferred with our Stanford-LPCH doctors.
Other liver levels have been trending up and out of range, high, as well: SGOT/AST and SGPT/ALT.
WHAT NOW, BONE MARROW ASPIRATE TOMORROW
Nicholas will go to the operating room tomorrow for a bone marrow aspirate so an analysis of the fluid can rule out a relapse. The thought of this is almost too much to bear—please PRAY that this test will indicate that Nicholas is still in remission and that the reason for the high LDH level is due to all the heavy medicines he has been on to treat the CMV.
NICHOLAS ENERGY, SPIRIT, JOY, LOVE…IS STILL AMAZING
As mom was explaining this latest news to our third son, Matt, Nicholas said, “They are making sure the bad blood doesn’t come back.” We know we are blessed; Nicholas is simply amazing! And with his demeanor and some level of understanding about all of this, Nicholas makes the situation easier on one hand, and harder on the other hand because his love and joy is seen everywhere we look. And we know that God’s love is at work and that He is in control—and through Him mom & dad will find strength.
NOTE: NICHOLAS’ SONG OF LOVE
Over the next couple of days we will try to get Nicholas’ Song Of Love operable (please refer to yesterday’s journal for details on this).
September 8, 2005 Blood Counts:
WBC: 7.5
HGB: 11.8
PLTs: 58
ANC: 1,560 (see above *)
___________________________
Wednesday, September 7, 2005 11:44 PM CDT
Day plus152
GOOD DAY—please click on View Photos
Nicholas had a good day and tonight he was entertaining the twins from next door. Please click on View Photos to see them dancing.
DAY HOSPITAL TOMORROW (THURSDAY)
Tomorrow we will be at CHO for treatment relative to the CMV, and discuss the issue regarding Nicholas Platelets that have been trending down and are very, very significantly low, and out of range.
SONG OF LOVE—please listen to this personalized song
A song of love about Nicholas has been created by The Songs of Love Foundation (The medicine of music, www.songsoflove.org), a non-profit organization that creates original personalized songs, free of charge, for children with chronic or life threatening illnesses.
In a few days we should have the song playing in the background of this CaringBridge site.
In the meantime, here it is for you now. Please go to Links below and click on the first link, Nicholas' Song of Love. (Words, music, and vocals by Thomas Jones.)
Here are the words to the song:
I know a boy who cares about others
He's thoughtful and he's kind
He's really into artwork
His painting is so fine
He likes lakes and oceans
And galloping on the beach
He likes snorkeling, dolphins, and swimming
He will spend his time on each
Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William and Trenton
And Amanda, K.J. and Neda we'll mention
Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun
He swings on swings and plays basketball
He likes Peter Pan and Spiderman as well
Video games keep him occupied
As if you couldn't tell
Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William And Trenton
And Amanda, K.J., and Neda we'll mention
Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun
Thanks for listening, and keeping Nicholas in your prayers!
SPECIAL NOTE
Soha and Reda, thank you so much for your time, energy, and Reda for your team helping with the technical aspects toward enabling us to share the song with others.
September 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, September 6, 2005 11:23 PM CDT
Day plus151
MEDLEY OF FUN
Nicholas and mom went out an had an incredible walk at a Lafayette park, enjoying the scenery, pigeons on the side of a hill, playing football catch, and tossing a Frisbee. Remember, he is still on Prednisone (steroid, although we have been tapering it down every Thursday since August 18) so you know he had a snack at the park. Well, a snack would be fitting anyway.
PLATELETS ARE STILL DROPPING
Nicholas’ Platelets are now at 60 (please see August 29, 2005 journal for information about this concern).
September 6, 2005 Blood Counts:
WBC: 6.4
HGB: 12.1
PLTs: 60
ANC: NA
Cyclosporine level in range: 306
September 2, 2005
WBC: 5.5
HGB: 11.7
PLTs: 66
ANC: 1,760
Cyclosporine level in range: 248
___________________________
Monday, September 5, 2005 10:31 PM CDT
HOW LONG HAS IT BEEN?
Day plus150 (150 days since the BMT) and Day 290 since Nicholas’ leukemia diagnosis.
METICULOUS AT DRAWING AND COLORING
Well, the transformation from just coloring to meticulously coloring within lines and choosing just the right color gradually occurred over the past several months. Nicholas has always enjoyed artwork—painting, coloring—however, he seemingly has taken a critical eye toward his artwork. Well, he is enjoying it and having fun.
(Please click on View Photos to see a picture of Nicholas doing artwork and pictures from his cousin’s sleepover last night at our home.)
NICE DAY, SHORT EVENING DRIVE
Nicholas had a nice day! He was feeling fine and just had an overall good day. This evening we took a very short 10-mile round trip drive on back roads from Lafayette to Alamo. Nicholas was spotting “interesting” mailboxes. He spotted a mailbox that looked like 101 Dalmatians, an American Flag, and geometric designs.
NEXT APPOINTMENT
Nicholas' next appointment for a check-up and Day Hospital treatment is Thursday, September 8. He will receive IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly effects immune compromised patients).
September 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, September 4, 2005 11:02 PM CDT
Day plus149
NICE DAY AND NICE EVENING
What a difference a day makes. Nicholas awoke this morning feeling just fine. He had a good day and evening without any complaints of pain of uncomfortable feelings.
He was fascinated with science today saying, “I want to do science today.” So mom accessed a science program on the computer and he worked on his science—we love seeing him continually reaching out to expand and learn.
Today was his cousin Mikayla’s birthday and he surprised her by showing up at her house for a very short visit. And she surprised Nicholas by coming over for the evening and spending the night. What a beautiful sight: talking, playing, laughing, and seeing Nicholas’ glow & smile. The type of glow & smile we remember from him enjoying friends spending the night. Oops, a movie and popcorn was a highligt for them as well.
September 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, September 3, 2005 11:41 PM CDT
Day plus148
NICE DAY, NOT SO NICE EVENING
Leisurely Saturday afternoon drive to Sausalito, across the Golden Gate Bridge, down Lombard Street (crooked road) in San Francisco, and back to Lafayette. Seeing the bay, the ocean, surfers, boats, fog rolling in, more ocean, people, places, and just “things” helped the afternoon trip be a nice, joyful time for Nicholas—even though we spent the entire time in the car.
NOT SO NICE EVENING
Late evening, Nicholas’ complained that his stomach was bothering him and he was not feeling well. Shortly afterwards, he vomited and at this moment he still is not feeling well. We PRAY and watch over him as every moment at times torments us because of this awful disease—over this process that we know is long, and sometimes leaves us feeling lonely and so afraid. Not lonely for love that our Father provides, and not lonely for love that you provide. Feeling lonely at times because this disease is awful, always reminding mom & dad that we are not in control, not able to protect and keep Nicholas safe from harm.
And while afraid we are reminded, reminded that our Father, God’s, love has never abandoned us. Reminded and feel that His love comforts us—we are so grateful for His presence and are comforted to know that Nicholas is His perfect child.
September 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, September 2, 2005 11:58 PM CDT
Day plus147
ANOTHER GOOD DAY and we are really enjoying them. AND while being so thankful for these days, it is still so hard every moment knowing what Nicholas is going through. Hard living through this “leukemia and bone marrow stuff” as part of our lives, every day and every moment. Hard mentally to administer the various medicines mornings and nights, because of the realization about this awful disease that Nicholas is fighting. Hard mentally to administer the medicines because of their side effects.
AND while it is hard to do all these things we are absolutely grateful that Nicholas’ spirit, joy, passion, love, and overall amazing way of going through it all without any complaints could not be any better. AND mom & dad are so grateful for the strength—although it is very, very tough to be so strong through it all—and grateful that through God we are physically able to push through it all—although physically and mentally we become drained. In those draining moments our faith shines light on love and love generates EVERYTHING we need and need to be to help see Nicholas through it all!
MORE INTERESTING COMMENTS FROM NICHOLAS as mom was walking by him playing today. Nicholas said, “Mom when can I have restaurant food?” Mom said probably in a couple of months. Nicholas then said, “When can I go into crowded places?” Mom said probably in a couple of months, however, they have to test your…“ (Nicholas then finished mom’s sentence) “…my immune functions.” Mom laughed! Then, Nicholas said, “Well I know that’s important!”
NICHOLAS SHOULD BE STARTING HOME INSTRUCTION (SCHOOL) next week through our Lafayette School District. With restrictions still in place, it will be awhile before Nicholas can participate in school with other kids—however, we will create ways to keep him engaged with other kids and find ways for him to enjoy the sights and sounds of play that we know come from kids at play.
September 2, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, September 1, 2005 10:49 PM CDT
Day plus146
GOOD WEEK ENDING IN SOME MORE GOOD NEWS
Nicholas does not need to go to CHO Day Hospital tomorrow, Friday, for IV Cytogam. With his initial response to the medicines, the protocol for CMV calls for him to go directly to one day every other week now, alternating weeks with IVIG, and at home Nicholas will receive IV Gancyclovir once per day versus twice per day. So tomorrow he can start his long holiday weekend without a hospital visit—yeah!
NICHOLAS’ CONVERSATIONS CAN BE VERY INTERESTING
The pump mom was given to infuse Gancyclovir into Nicholas via his Broviac (central line in his chest), as part of the CMV treatment is attached to a rectangular metal box. Aside from being awkward for Nicholas to be mobile while the pump is attached for 2 hours a day, it takes mom several steps each time to get the medicine ready with tubing and hooking up the medicine—let’s just say it’s a bit cumbersome.
Mom received a phone call from the home health care agency stating that they had approval for the medicine to be in a ball, called an eclipse, and requires no pumps and no tubing for mom to hook up. It’s self contained—very simple and light to carry.
While mom was receiving the news she bellowed, yes! WHAT NICHOLAS SAID: After the call Nicholas asked mom why she bellowed, yes. After mom explained, Nicholas said, “Well, I just want my Platelets to be up.” Mom asked what do you know about Platelets? Nicholas said, “Well, I can’t wrestle and play a lot of things while my Platelets are low.” And mom laughed. Basically, while his Platelets are low Nicholas needs do to activities that keep him on the ground to avoid falling and getting cut or hurt.
September 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Sunday, July 31, 2005 11:45 PM CDT
Day plus114
GOING HOME IN FIVE (5) DAYS We’re anxious for the conversations our doctors at Stanford-LPCH and Children’s Hospital Oakland (CHO) will be having this week, toward an examination at CHO planned for Friday and being able to go home Friday.
SOOTHING SUNDAY and uneventful medically, other than the Cyclosporine, Prednisone, Amlodipine, and other medicines administered via mouth in the morning and at night. We give praise to our loving God for Nicholas’ sustained energy, enthusiasm, and joy. And we PRAY for all the kids undergoing treatment and care—praying for their comfort and healing.
CLINIC APPOINTMENT TOMORROW (MONDAY) and all blood and chemical levels will be checked as we continue the path toward the plan to go home on Friday. While we recognize that the roller coaster still continues, we absolutely expect to go home Friday and are prepared to push, push, and push along with our continued praying, praying, and praying for Nicholas’ full recovery now.
Why not, why can’t Nicholas be healed and cured now? Why can’t he be off the roller coaster that he has experienced? While mom & dad are full of happiness and joy as we plan to go home, while we soak in all the happiness and joy that is encamped around us right now, we are full of “why not this and why not that.” And, here too, we are reminded,…“Be still and know that I am God.” And knowing God, really knowing God, allows us the freedom to live today and not live in the “why not this and why not that!”
July 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 30, 2005 11:23 PM CDT
Day plus113
GOING HOME IN SIX (6) DAYS.
GREAT SATURDAY as we realize that this is the last weekend scheduled to be away from home for this BMT segment of Nicholas’ journey to being cured. The day was even better with visits from two families from Nicholas’ Montessori school. He was very, very excited to see them—when he heard the first family was here he said “Amanda, Amanda, Amanda;” and when the second family arrived he said, “Trenton is here, Trenton is here.” We all enjoyed eating together, playing, talking, and just making life seem normal.
After they left we asked Nicholas what would he like to say about the day and he replied the following on what he wants those families to know: “Thank you for coming, thank you for playing with me, and thank you for a wonderful day.”
YOU, AND YOU, AND YOU… ARE SO AMAZING TO US
We regularly say that we are blessed and today was another testament to the many blessings that impact our lives. Through family and friends that pray for Nicholas, see and play with him; pray for mom & dad, see and talk with us; and connect with us in many different ways let us know that we are loved. And we know that life has all of you so busy with your family, which makes your involvement with us during this long journey so amazing—thank you all so very much!
July 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, July 29, 2005 11:32 PM CDT
Day plus112
GOING HOME IN SEVEN (7) DAYS or after 7 sleeps as Nicholas puts it. Kaeli (recent RMH guest and BMT patient), her brother Seamus, and mom Theresa have become amazingly important in our lives. Although Kaeli left the RMH a few weeks ago, her family continues to visit Nicholas and mom & dad regularly. Watching Nicholas, Seamus, and Kaeli play or just hanging out together you would see “friends” with a seemingly long-standing connection. It’s amazing how the short time together at LPCH and the RMH generated a bond, friendship, and love.
FAMILY, FRIENDS, AND NEW RELATIONSHIPS have made a blessed difference in our lives. LPCH and the RMH has been our home the last four (4) months and the other patients/RMH guests and their families have become our neighbors. Kids and parents from all over the United States—including Hawaii and other Countries—including Jordan, have developed relationships via a common bond. The common bond, of course, unfortunately has been cancer. Parents with kids who are no longer at LPCH or RMH call us from their homes or stay in contact via telephone calls and respective websites. What we are saying is, there can be so many wonderful things in all of our lives through connecting and relationships with anyone, from anywhere, and at any time. Thank you, thank you, and thank you—God’s love is amazing!
THROUGH ADVERSITY, this “leukemia and bone marrow stuff,” blessings in our lives have flowed from the relationships above and from the INCREDIBLE MEDICAL STAFF MEMBERS at Children’s Hospital-Oakland and Lucile Packard Children’s Hospital-Stanford. We know we are blessed and give thanks. And Nicholas, he is our sunshine and we are thankful for all the many things of love, passion, and patience that he has taught us. And our other three boys, Christopher, Timothy, and Matthew, they are pillars of strength enabling mom & dad to stand in full strength for Nicholas—we lovingly thank them.
PLEASE, PLEASE CONTINUE WITH YOUR LOVE AND PRAYERS as Nicholas’ journey does not end with coming home next Friday. It’s a segment or stop on this journey Nicholas calls “all this leukemia and bone marrow stuff.” Or putting it in a different way, it’s like halftime of a game—celebrating accomplishments and strategizing to overcome challenges in front of us.
July 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, July 28, 2005 10:29 PM CDT
Day plus111
GREAT NEWS—CELEBRATING THE MOMENT.
The additional Chimerism test results from the July 25 bone marrow aspirate have been completed and his T-Cell percentage came back up to 96 percent. And the overall percentage is at 98-99 percent. This is GREAT! Nicholas’ doctors are very pleased with these results. (If necessary, please refer to July 18 journal under Journal History for details about the percentages.)
As mom & dad take a deep breath, we let out a sigh and have happiness and joy circling all around us. The joy is so wonderful that it seemingly lifts us into the air—we feel light as a feather and have nothing except bliss flowing through our bodies! We are so grateful for your connection, love, and prayers. And as we said before, our love for God is unchanging, as the numbers, in any direction, would not sway that love because knowing our loving God calms our fears into trusting His love.
Note: As we celebrate the moment, we make it very clear to Nicholas that he has always been doing the right things, so that he does not think that he has anything to do with any numbers that are not good.
CYCLOSPORINE AND OTHER CHEMICAL LEVELS
Here too, Nicholas’ doctors are very happy with his levels. His Cyclosporine level is in range at 298, liver enzymes continue to improve, and kidney functions are all in range. Nicholas gets to remain free from IV hydration and other IV medicines so he is free from being hooked up to "stuff."
No changes are being made to his medicines {Cyclosporine and Prednisone-the steroid (that are helping to manage the GvHD), and the Amlodipine (for hypertension relative to the steroid that has a side effect of increasing blood pressure)}.
NEW ITEMS ON HIS DIET
Pepperoni pizza and orange juice are now on his diet. Remembering the restaurant limitations discussed in the July 17 journal, the pizza has to be made fresh at home or store bought—frozen—and cooked at home.
GOING HOME NEXT FRIDAY IS THE PLAN—MORE GREAT NEWS AND REASON FOR ANOTHER CELEBRATION
If all goes as planned next Friday we will be going home. Here is a snapshot of the plan:
1) August 1 (Monday) exam at Stanford and all levels are re-checked,
2) Followed by Nicholas’ Stanford doctors talking with his Children’s Hospital-Oakland (CHO) doctors about transferring regular care to CHO with BMT follow up remaining with Stanford
3) August 4 (Thursday) appointment at Stanford’s Day Hospital for IVIG (planned boost to the immune system that he has been receiving as part of the BMT protocol)
4) August 5 (Friday) mom & dad meet and are reacquainted with Nicholas’ oncologist at CHO, and Nicholas will be examined. (Please refer to the July 8 journal under Journal History for details about the examinations at CHO.)
5) …And we go home August 5 (Friday) after being away for over 4 months!
July 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, July 27, 2005 11:10 PM CDT
DAY PLUS110 (DAY 250 SINCE NICHOLAS’ LEUKEMIA DIAGNOSIS)
Today is the 250th day of Nicholas’ leukemia journey, 110th day since his BMT, and his 5 ½ year birthday. We paused and celebrated, giving thanks for his strength and playfulness during his continued fight.
CLINIC APPOINTMENT TOMORROW AND POSSIBLY THE CHIMERISM RESULTS
Tomorrow we have an early morning clinic appointment for labs (including Cyclosporine) and a check up. We’ll follow up on chemical levels to ensure they are in range and he can continue to be off IV hydration. The GvHD of the skin will be assessed (only traces are present). We are dealing with the Cyclosporine issues, and anxious to put the Chimerism issue out of our minds—it is consuming so much of us mentally and physically. It’s possible the Chimerism test results will be available tomorrow.
If not tomorrow, it should be Friday that we learn the Chimerism results. And, we are not leaving God’s footsteps, reminding ourselves what He has said—be still and know that I am God. With his doctors, we will then plot the next stage of Nicholas’ journey. We have seen some amazing blessings—the way Nicholas has navigated through all of “this leukemia and bone marrow stuff—and we PRAY for continued blessings and for Nicholas’ unfolding story to help others. As it helps us better realize “love.”
July 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, July 26, 2005 11:59 PM CDT
Day plus109
UNEVENTFUL MEDICALLY and living it up as well as waiting for the Chimerism results. However, we are PRAYING, and focusing on healing regardless of what the numbers suggest because Nicholas is Nicholas, your prayers and our prayers matter, and God's omnipotence, omniscience, and omnipresence is at work. Nicholas had a full day of playing throughout the RMH.
TENNIS STAR VENUS WILLIAMS came by the RMH for a visit. Because Nicholas is in the immune wing he had to stay inside and could not visit Venus face-to-face. (Please click on View Photos to see Nicholas, well the back of him, waving to Venus.)
July 26, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, July 25, 2005 10:33 PM CDT
Day plus108
TODAY’S BONE MARROW ASPIRATE procedure went well. We were told the marrow looked good; of course, the lab work will determine the results. As stated in yesterday’s journal, we are expecting Chimerism results on Friday. PRAYING AND PRAYING that the percentage of donor cells is at least 96percent at this time.
Note: The anesthesiologist team has the dose down so well as it pertains to Nicholas, that by the time he comes out of the operating room and arrives into the recovery room he wakes up without any side effects.
CHEMICAL PANEL LAB WORK LOOKED GOOD. Kidney function is good with all factors in range. The liver function is looking better with one factor still out of range-high, however, it continues to be coming down. Nicholas’ magnesium was low last week and we began supplements—the numbers today revealed that it is back in range.
BUT THE CYLCOSPORINE LEVEL continues to be a struggle to keep in range. Today’s level was at 220, low and out of range. The doctors are not making any adjustments to the Cyclosporine dose or Prednisone dose (we, again, want to begin tapering this steroid down). Although the GvHD to the skin, on his ankles, had been clearing up, it was present on his ankles today. On Thursday we will do more lab work to check the Cyclosporine level and determine next steps.
NICHOLAS’ QUOTE OF THE DAY: Remember, Nicholas was not able to eat or drink anything beginning Sunday night at midnight until after his procedure today. As mom & dad were getting everything ready to go to the hospital, mom had poured a bowl of Cheerios. Now, she was not trying to hide this from Nicholas, however, Nicholas woke up and said: “I hear someone is busted over there. Next time, please don’t try to sneak because I can here you.”
July 25, 2005 Blood Counts:
WBC: 4.7
HGB: 11.4
PLTs: 146
ANC: 2,801
___________________________
Sunday, July 24, 2005 11:46 PM CDT
Day plus107
RELAXING DAY as Nicholas, mom & dad had a quiet morning, naps together, and a casual drive this evening viewing the countryside and sunset (within 30 minutes from the hospital of course). Mom and Nicholas played various ball games this morning and dad & Nicholas had our regular dance to the song, Dance With My Father.
TOMORROW’S (MONDAY) PROCEDURE. So here we go again with another bone marrow aspirate with a sample for the Chimerism test (based on news in the July 18 journal). The results are scheduled to be back by Friday (a lot faster than normal). Also, marrow sample will be sent off for another Cytogenetics analysis to confirm there are still no hypodiploid cells (reason for the BMT). We are not sure when those results will be back. Note: The Cytogenetics results from the July 7 sample was normal—great.
NICHOLAS HAS MORE THAN DONE HIS PART since November 19, 2005, when he was diagnosed with leukemia and a month later with a need for a BMT.
Nicholas has constantly been patient with the ups and downs of the disease and the chemotherapy/medicine challenges. His love for everything and everybody has been amazing. The sunshine he illuminates in our lives, and in the lives of others has been equally amazing—nurses, doctors, patients, parents of patients, family, friends, and new people that he meets. WE THANK GOD FOR THE BLESSINGS HE HAS GIVEN US, and for everything our little sunshine gives us. WE PRAY that the Chimerism test reveal that the percentage of donor cells go up and up and reach 100 percent—and remains at 100 percent. WE PRAY for complete healing, and recognize all the love and joy that we have been blessed with throughout this journey. (If necessary, please refer to the July 18, 2005 journal entry for background.)
WE ARE EXPECTING TO GO HOME THE FIRST WEEK OF AUGUST. We have been away from home since March 31 so going home after all this time will, strange to say, be with mixed emotions. We say mixed emotions based on the care that has been needed, the great care received, and of course just wanting to be HOME.
PLEASE PRAY WITH US SOME MORE, SOME MORE AFTER THAT, AND MORE AFTER THAT—thank you so very, very much.
July 24, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 23, 2005 11:59 PM CDT
Day plus106
FRIENDS from home, school, LPCH/RMH made for a wonderful day at the RMH. We are so grateful that today was an uneventful-medical day (no appointments, no surprises, no complaints...). And we are so grateful that love fills our days and nights.
TOMORROW (SUNDAY) will be like every day—praise and give thanks for the many blessings in our lives. And Sunday evening will prepare for Monday's lumbar puncture and bone marrow aspirate. Sunday night beginning at midnight we will not be able to give Nicholas anything to eat or drink as part of the preparation for Monday's procedure. (Sunday night's journal will include more about next steps.)
July 23, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, July 22, 2005 11:47 PM CDT
Day plus105 (Day 245 since Nicholas’ leukemia diagnosis)
CALM, QUIET DAY and although we are anxious to have the additional bone marrow aspirate performed and results known, we pause to just appreciate the moments shared, moments experienced, and moments to come. While it’s been so very long, 105 days since his BMT, 245 days since the diagnosis, we have never gotten comfortable with this awful set of moments and experiences. And not just the awful things that Nicholas has experienced, also the awful things that so many beautiful kids from all over have experienced and experience today.
We are thankful for these calm, quiet days primarily because for the day, Nicholas doesn’t seem to have a worry on his mind. And he shouldn’t have to worry—he should live, love, learn, play, smile, laugh, and teach. And we wish you could experience these kids with these live-threatening diseases. These kids amazingly love, learn, play, smile, laugh, and teach us many lessons on how to live in the moment and to take moments to just live!
Have a great weekend and know that by you reading this journal, you are taking a moment to think about others and that feels so good. Thank you for helping Nicholas and so many other beautiful kids to smile. You, certainly, make mom & dad smile.
July 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, July 21, 2005 11:02 PM CDT
Day plus104
TODAY’S EXAM AND CYCLOSPORINE
Cyclosporine is high again at 396. We’re reduced tonight’s dose to 0.6ml, moving forward we’ll administer 0.9ml twice per day and then re-check the level on Monday.
Kidneys are showing a little increase in their relative levels, so we’re advised to have him drink more each day and we’ll also check that again on Monday. If the levels are still too high Nicholas may have to go back on IV hydration.
Magnesium level is generally affected by the overall process, and now that Nicholas is off the hydration he will need to take a supplement daily to get his magnesium up. His level is at 1.4 today and the targeted range is 1.8-2.2
THE ADDITIONAL BONE MARROW ASPIRATE DATE IS SET
Monday will be the bone marrow aspiration to re-do the Chimerism test—we are PRAYING that the numbers go back up. (If necessary, please refer to the July 18 journal entry)
FRIENDS
Nicholas and mom had a nice visit from Sarah, daughter of our friend, Cyndi. Nicholas recruited her to play a racing game with him and then just enjoyed conversation.
SEVERAL FRIENDS HAVE BEEN DOING SOME AMAZING THINGS IN PREPARATION FOR NICHOLAS COMING HOME! Thank you Phyllis, Cyndi, Linda, Gina, Michael, Don, and Sal. You are putting in countless hours and/or levels of energy around changing the environment at our home that will be an added benefit to Nicholas based on this “leukemia and bone marrow stuff.” And once again, thank you to so many others who help Nicholas and mom & dad through a variety of ways like visits to the RMH, guestbook entries, car pool for dad from our home-away-from home, etc. WE ARE BLESSED AND SO APPRECIATIVE Soha, Stephanie, Annette, Marialena, Dave, Janie, Shari, Allie, Melinda, Mary, Lisa, Iris, Miss Shirley ,and all of you, truly, from A-Z. All of your names are in our hearts and within God.
NOTE: Have you noticed Nicholas wearing a red band on his wrist? Nicholas has been wearing a red band on his wrist for fellow BMT patient and RMH guest, KJ. It's a personalized band KJ's parents ordered and Nicholas choose to support KJ in his journey.
July 21, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, July 20, 2005 11:49 PM CDT
Day plus103
REPEAT PROCEDURE ON OUR MINDS, AND NICHOLAS’ GOOD DAY
Yes, the additional Chimerism test next week is heavily on mom and dad’s minds and we are PRAYING continually. Nicholas, he had a very good day with Kaeli and Seamus painting rocks, crosses that they painted into swords, and playing until late tonight.
PREDNISONE AND CYCLOSPORINE
Remember, one of the side effects of the Prednisone is an increased appetite. And Nicholas’ appetite has certainly increased and with it he is gaining weight; we are so glad that he is keeping active physically. And remember, one of the side effects of Cyclosporine is increased hair growth including facial, back of the neck, the back, etc. And he is growing a lot of hair—everywhere. THE WEIGHT AND HAIR GROWTH WILL GO BACK TO NORMAL WHEN HE STOPS RECEIVING THESE MEDICINES. Thankfully, he is also increasing his passion for people and has amazing patience and toughness of his mind to not let any of the things going on within him and on the outside (weight, abundant hair growth) effect his demeanor or spirit. Our little sunshine is shinning brightly; praise God!
CLINIC TOMORROW
Exam and lab work tomorrow morning to check Cyclosporine level, chemical levels, and any impact due to stopping the IV hydration. We should receive the confirmed date for next week’s additional bone marrow aspirate for the Chimerism test.
July 20, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, July 19, 2005 11:24 PM CDT
Day plus102
WAITING FOR THE ADDITIONAL CHIMERISM TEST, BUT NOT WAITING TO GIVE THANKS AND TO REJOICE
“Be still, and know that I am God” is what matters most to mom & dad. Especially, during times receiving news like yesterday. We rejoice in the blessings that are all around us—and thankfully all around and within Nicholas. We are blessed with your love, support, and prayers along this journey. Although it hurts to know the T-cell’s percentage has dropped (stated in yesterday’s journal), we are comforted by understanding His words: “Be still, and know that I am God.”
THANKFUL: NICHOLAS IS NOT HOOKED UP TO ANY IVs TONIGHT
Picture your child, your nephew or niece, or even yourself when you were child. Imagine a nice warm shower, a soothing massage, and being “free” from anything holding you back or constraining you from moving about freely as your heart desires. Then, hopping into bed, tossing and turning just because you can—and are able to because there is nothing to hold you back or constrain you.
Well, this is what Nicholas is experiencing tonight for the first time since March 30, 2005. Tonight, he has no IV medicines or hydration administered—he is free from IV poles, IV backpacks, and tubes. And it is so good to see! Well, it’s also so good for mom & dad because Nicholas can go to the bathroom himself tonight, we do not have to get up to manage the IV pump, or get up to take medicines out of the refrigerator. We are thankful for this and simply thankful to be blessed by Nicholas’ beautiful energy, passion, and love. Good night!
July 19, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, July 18, 2005 11:05 PM CDT
Day plus101
RESULTS OF THE CHIMERISM TEST PRESENT A CONCERN
The July 7 test results came in today and one important number from the Chimerism test dropped significantly. So although the July 7 bone marrow aspirate was hopefully the last, Nicholas will undergo another lumbar puncture and bone marrow aspirate next week.
Remember, after the April 7, 2005 BMT there were going to be three DNA Chimerism tests (one in May, June, and July) to reveal the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cell and the Neutrophils in the marrow. The goal over time is 100 percent of the donor cells at work, and it was okay that it was not 100 percent first as long as the percentage was increasing, not decreasing. The May overall percentage was 95 percent, June 98 percent, and in July one of the key markers—T-cells—had dropped to 90 percent from 96 in June and 90 in May.
It can happen that it dips, however, dipping more than 5 percentage points is a “caution flag” and our doctors do not want to see a pattern of dipping. So next week’s bone marrow aspirate (procedure) is very important. Tomorrow we should receive the date for the procedure.
CYCLOSPORINE AND PREDNISONE’S ROLE WITH THE CHIMERISM TEST
Roller coaster across the journey—okay, the Cyclosporine level today was in range (240-310) at 284. Tonight, the Prednisone (steroid) will be reduced from 5 cc to 4.5 cc. Later will talk in detail about the role the Prednisone is having and decisions around it continually being administered based on the Chimerism results. However, it could be that the Prednisone is stopped and Nicholas would have to manage any GvHD flare up—referring to Chimerism information above it would be a trade off. AND WHAT A PLATFORM OUR LOVING GOD IS ON, AND WHAT GLORIOUS HEALING FOR NICHOLAS TO COME. WE PRAY FOR WISDOM TO OUR DOCTORS.
HYDRATION
Tonight Nicholas is scheduled to receive his last overnight IV Hydration. We PRAY that his kidneys handle this change otherwise we will have to go back on the Hydration.
UPCOMING THURSDAY EXAM (NOT THE BONE MARROW ASPIRATE)
July 20 Nicholas will be examined, blood lab work will be performed to check the chemical levels and Cyclosporine. And being off the Hydration will be assessed.
PRAYING
Mom & dad are so blessed to have Nicholas move through the journey as he has—and we are praying for his continued healing, complete healing, and that his loving smile, energy, enthusiasm, and passion for caring about others remain a constant for all.
Thank you so very much for praying and being with us. Thank you to all we know, have come to know, and do not even know other than through your guestbook entries and prayers.
NICHOLAS HAVING FUN WITH HIS GRANDMA, AUNTS, AND COUSINS
Nicholas had an afternoon of family fun—grandma Charlotte visited along with two of his aunts, and several cousins.
July 18, 2005 Blood Counts:
WBC: 3.9
HGB: 11.0
PLTs: 169
ANC: 3,000
___________________________
Sunday, July 17, 2005 11:42 PM CDT
******Day plus100******
******Day 240 since Nicholas’ leukemia diagnosis******
Nicholas did it—it has been 100 days since his bone marrow transplant! (Click on View Photos; and photos at the end of "current-pictures" album under Links)
LYRICS THAT HAVE COME INTO OUR THOUGHTS AS WE CELEBRATE:
Celebrate good times come on, lets celebrate; we’re going to have a good time tonight…
You’re my love, you’re my angel, you’re a dream of a (son)…
You must be my lucky star, because you shine on me wherever you are…
We are the champions, of the world; we'll keep on fighting…
Because you live son, my world, has twice as many stars in the sky…
I believe I can fly, I believe I can touch the sky…
I’m walking on sunshine, whoa oh, and don’t it feel good…
EXAMINATION TOMORROW
Various levels will be checked tomorrow: Cyclosporine, kidney function, liver function, and regular blood count levels. Nicholas’ doctor will check his tongue (still a little sore on the tip and toward the back although there are no visual signs of soreness.
The Chimerism results from the July 7 bone marrow aspirate should be in tomorrow, and shortly after the Cytogenetics results.
WHAT THE MEDICAL COMMUNITY SAYS ABOUT THE FIRST 100 DAYS, AND AFTER 100 DAYS
FIRST 100 DAYS:
Please refer to the Journal History, and the May 29, 2005 journal entry.
AFTER 100 DAYS:
If a patient’s condition is still stable at day plus100, they are able to return home. WE ARE PLANNING TO GO HOME BY THE END OF NEXT WEEK. If the patient was previously cared for at another hospital (Children’s Hospital-Oakland in Nicholas’ case) they will again resume the care of your child. The patient will return to LPCH for follow-up at 6 months post-transplant and then yearly after that for 5 years post-transplant. If any complications, such as chronic GvHD, should develop the patient may be required to be seen more frequently at LPCH by the BMT department.
Because Nicholas’ immune system has had a chance to grow stronger after 100 days, when we go home we will then be able to relax some of the restrictions and isolation guidelines. Nicholas will be permitted to go into other buildings besides home, the RMH, and the hospital, however, only during non-busy times. Although he will be able to go to the movies, shopping centers, grocery stores, and restaurants, he must wear a mask while in these public places—except when eating at a restaurant. We will need to avoid busy weekend crowds, busy holiday season crowds, and popular movie times. For restaurants, it is recommended that we go to those with outdoor seating and where the food is freshly prepared.
IMMUNIZATIONS:
Nicholas will not be eligible to receive any childhood immunizations until at least one year after transplant. Our doctors will review his immune constitution studies at this time and will let us know when it is safe to begin re-immunizing Nicholas. Although Nicholas cannot yet receive the flu vaccine, the rest of our family will receive the annual vaccine as recommended.
LONG TERM COMPLICATIONS
Chronic GvHD
Chronic GvHD can develop 3-12 months after transplant and may affect up to 25percent of pediatric transplant patients. Chronic GvHD may cause infections, skin abnormalities, dry eyes and mouth, and/or dysfunction of the liver, lungs, or gastrointestinal tract.
Patients who experience chronic GvHD are placed on medications to suppress the effects of GvHD. Treatment may be started in the hospital or on an outpatient basis. And patients may remain in strict isolation for a longer than 100 days post-transplant. While the patient is being treated for GvHD, the patient will be more prone to get infections and will need to be monitored closely for fevers, signs of infection, immunosuppressive dosing, worsening signs, and symptoms of GvHD.
Ophthalmologic Issues
Several years after receiving FTBI (fractionated total body radiation Nicholas received during the week before the BMT) there is the possibility of developing cataracts (clouding of the lens of the eye). If the formation of cataracts interferes with a patient’s vision, it may be necessary to remove the cataract by a surgical procedure.
Other transplant-related issues that might require more frequent and on-going ophthalmic follow-up include past CMV infection and/or chronic GvHD of the eyes.
Endocrinology Issues
The irradiation and/or chemotherapy used for BMT conditioning may have long-term effects on a patient’s growth and development as well as on a patient’s onset of puberty. Most of the patients who experience these side effects can be successfully treated with supplemental hormone therapy. Nicholas’ growth pattern will be monitored carefully, and a referral will be made to a pediatric endocrinologist for annual evaluation and treatment, if necessary.
DISEASE RECURRENCE
Unfortunately, even with a BMT, some patients may experience a recurrence of their leukemia. Despite the risk of serious complications and relapse, transplant offers hope for a possible cure.
BUT WE WALK WITH OUR LOVING GOD—PROVIDER AND PROTECTOR
Following are words that have helped us along Nicholas’ journey:
“I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God’s presence with me here. The joy that none can take away is mine, I walk with God today.”
“Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and he will walk with me.”
July 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 16, 2005 11:05 PM CDT
Day plus99
Tomorrow is Day plus100! Nicholas has been amazing during this stage of the BMT process; his energy, strength, and ability to glide through the ups and downs is simply incredible. Mom & dad are so thankful for our loving God’s guidance, and your prayers.
PLAY DATE
Nicholas had a play date with Seamus, brother of Kaeli who was a BMT patient and guest at the RMH, and they were active all evening. They had dinner together and the main course was—you guessed it—baked chicken legs. Home away from home felt just like home as they played, laughed, and ate together. These times with others make a big difference toward normalcy.
TONGUE
He stilled complained of some pain on his tongue, toward the back, and thankfully there were no physical signs of an issue. Monday our doctor will follow up on this.
LOOKING GOOD, FEELING GOOD, & LOVING GOD
Nicholas is looking good. And to answer a couple of questions we have been receiving we want you to know what we know about two things you may have noticed. 1) The large amounts of hair over his body, especially his face, head, neck, and back are side effects of the Cyclosporine and will go away once we stop the Cyclosporine. 2) His puffy cheeks and stomach are side effects of the Prednisone (steroid) and will go away once we stop the Prednisone. The Prednisone will have a very slow tapering down process based on GvHD flare-ups that Nicholas had experienced. Then Cyclosporine will be tapered down.
He is feeling good—no complaints other than his tongue.
Loving God—through the ups and downs, through Nicholas’ sustained energy and strength, through everything in our way and around us, we are loving God for sustaining Nicholas, mom & dad, and the source of strength for our other three sons.
NOTE: Click View Photos to see Nicholas and new food items on his diet.
July 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, July 15, 2005 11:29 PM CDT
Day plus98
CYCLOSPORINE, KIDNEYS, LIVER, HYDRATION
Well, the good news is that the Cyclosporine level wasn’t low and out of range after switching from IV to oral, as the case has been when switching to oral. The bad news is that it is still high and out of range (240-310) at 364. Tonight’s dose will be reduced to 110mg.
Nicholas’ liver function and kidneys look good—it does not appear the reduced IV hydration negatively impacted their function. The hydration will continue over the weekend and it is planned that it will be discontinued on Monday. Then, on Wednesday the function of his kidneys will be analyzed to determine if any intervention is needed.
LAST OF ANOTHER MEDICINE
Gancyclovir, an agent used for the prevention of an infection called CMV, was administered for the last time tonight. BMT patients at risk for this infection are closely monitored for evidence of the infection until 100 days after transplant. ANOTHER BLESSING—no CMV infection experienced.
COUNT DOWN TO GOING HOME
It’s looking like Nicholas (and mom & dad) will be going home sometime the week of July 25. We're still on the journey and we have a very, very long path ahead.
YELLOW LIGHT
We have talked over, and over about the roller coaster effect and slippery road that Nicholas is on toward his cure. Well, with the slippery road we guess comes "yellow lights" or caution flags. We have a caution flag tonight as Nicholas complained of something bothering him on his tongue today and along with the doctors we are "watching it" to take action if needed. Nicholas does not complain much at all and when he does it generally is something real--although not always a medical issue. WE PRAY AND CLAIM NICHOLAS AS COMPLETE, WHOLE, AND GOD'S CHILD.
July 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, July 14, 2005 11:01 PM CDT
Day plus97
ORAL CYCLOSPORINE
Nicholas has been taking the oral Cyclosporine just fine despite the horrible taste. He’s such a trooper taking all the oral medicines he’s been required to take up to this point. And an amazing child more than tolerating having to be hooked up for IV medicines throughout the days & nights, and all the oral medicines up to this point.
LABS: CYCLOSPORINE, KIDNEY FUNCTION
Tomorrow we’ll draw “labs” and take them to clinic for analysis—hopefully the Cyclosporine level is in range and Nicholas’ kidneys have tolerated the reduced hydration. We’re hoping to be off the hydration for the weekend and that Monday’s “labs” reveal that Nicholas’ kidneys are functioning just fine without the extra flushing that the hydration would have achieved. We hope this is the case because that would mean we would no longer have any medications to administer via IV.
CLOSER, CLOSER, AND CLOSER TO GOING HOME
Nicholas asks several times a day, “how many more days till we get to go home”. We are getting so close to going home. Reflecting back to March 31 when we were admitted to LPCH to begin the BMT pre-regimen, looking at the pictures on third photo album under Links showing Nicholas going through this journey, we are so grateful for the progress Nicholas has made through God’s loving touches.
Although we tried very hard to act and treat things as if we were home while in the LPCH and at the RMH, Nicholas misses his home. We are thankful that he has only, really, began talking about it as we began talking about it—this has helped mom & dad so much as it would have been such a heartache if Nicholas was talking about going home during the times when it wasn’t even on the radar screen.
July 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, July 13, 2005 11:32 PM CDT
Day plus96
PROGRESS
Although Nicholas’ Cylcosporine level was high and out of range at 334 today, his overall condition is good and it was determined to be a good time to switch back from IV to oral administration of Cyclosporine. Tonight we will administer it orally at 130mg (the IV dose was 70mg, however, the oral formulation is different). Going to oral is progress, and WE ARE PRAYING that Nicholas’ body does not metabolize it too quickly as before which caused his level to drop low and out of range. That would not be a good thing for the GvHD.
His Cyclosporine level will be reviewed Friday, Saturday, Sunday, and Monday as we prepare to be released from the LPCH area and RMH.
Nicholas’ nightly IV hydration was also decreased to 400 ml (40cc per hour overnight). His kidney function will be checked Friday as well, if it is okay we may discontinue the hydration.
*****LABS THIS COMING FRIDAY ARE VERY IMPORTANT—HOME TO LAFAYETTE MAY HAPPEN BY THE END OF NEXT WEEK*****
REMEMBER THE ROLLER COASTER EFFECT?
Remember the medical ups & downs Nicholas has experienced and we talked about? Remember how things were great one moment and full-body pain ripping through us another moment? Well, I guess we are still on the roller coaster because the journey is far from over. And we can still feel the turns and gut wrenching jolts that are not far behind us. Although there may be more of these moments ahead, Nicholas has made amazing progress and along with mom & dad we are thankful to be on the journey with the love from God and all of the love & support from you.
LOVE IS ALWAYS THERE
Speaking of love & support, the blessings flow like wild flowers—so many beautiful colors combining to provide love that warms our heart and soul. Nicholas is able to enjoy so many beautiful moments through family and friends that weave throughout the segments of his journey. These segments make up his stay in the hospital, at the RMH, and when we have been home. (Home, it’s been nearly 3 ½ months since we have been home.)
The Nieuwsma’s came to visit today. On this very warm day, they showered Nicholas with fun—from inside the RMH to outside at the park
ADDITIONS TO HIS DIET
Nicholas was able to add salsa to his diet so this evening he had a few chips and some salsa. On Monday he added yogurt—although it was just 1oz and at least two-hours apart at this time.
NICHOLAS’ DINNER PRAYER TONIGHT
Nicholas’ dinner prayer tonight: “Thank you God for the food, thank you for a wonderful day, thank you for the sunshine and the water-fights, Amen!”
July 13, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, July 12, 2005 11:05 PM CDT
Day plus95 (Day 235 since Nicholas’ leukemia diagnosis)
CLINIC APPOINTMENT TOMORROW MORNING (WEDNESDAY)
Wednesday morning Nicholas has an appointment in the LPCH clinic to have lab work drawn to check the following:
1) Electrolytes to determine if the kidneys are handling the reduced hydration.
2) Liver function.
3) Cyclosporine level and follow up conversation about going back on oral Cyclosporine.
Also, the rash on his legs and ankles will be examined to see—WE PRAY—continued improvement of it and sustained improvement of the GvHD recently experienced. Based on what mom & dad sees, it looks better!
TODAY’S ACTIVITIES
Nicholas had a very nice day, and his activities ranged from painting rocks into character faces and just various designs, drawing pictures of our family, and he closed the evening with some physical exercises.
July 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, July 11, 2005 11:44 PM CDT
Day plus94
CYCLOSPORINE IN RANGE, GVHD LOOKING BETTER
Today’s Cyclosporine level was in range at 299, and Nicholas’ skin GvHD is looking better (remember the flare up last week on his legs and ankles).
ORAL CYCLOSPORINE MAY BE RE-INTRODUCED THIS WEEK
We’ll talk about this more maybe on Wednesday; however, the doctors are talking about moving from IV to oral Cyclosporine again. You may remember that the last time we went to oral Cyclosporine his level fell out of range, as it appeared his body was metabolizing the Cyclosporine too quick, not absorbing it.
Remember, this is important because its job is to protect Nicholas from getting GvHD of the skin, gut, and liver. Unfortunately, Nicholas has experienced these three things and we had to introduce him to the steroid Prednisone—then increase it to help Nicholas eliminate the GvHD.
Based on last week’s reduction of the Prednisone dose and then the flare up of GvHD to his skin, Nicholas will be on the Prednisone for a lot longer than expected. We need Nicholas’ body to tolerate the donor’s T-cells and not recognize them as foreign—so the approach will be slow as Nicholas’ body continues to normalize and build up to accepting the new T-cells. When we are able to begin reducing the Prednisone, week to week the reduction will be very, very slow.
More later.
CHEMICAL PANEL
Most of the levels are in range. One of the liver enzymes is a little high, however, better than it has been.
NEXT CLINIC VISIT
Wednesday Nicholas will be examined further to address the oral versus IV Cyclosporine, and follow up on the chemical panel to make sure his kidneys are in good condition and functioning correctly without the extra hydration Nicholas has been getting since we were discharged from the BMT on May 24.
NICHOLAS AND TODAY
Fun, socializing, and studying was the order of the day. Regarding studying, Nicholas was given a clip board by the hospital staff and even in the middle of “fun” in the family room with others, he asked for his clip board. Nicholas has been working with his alphabets and drawing lots of pictures of friends and family members.
Recognizing that mom has been calling Matthew a lot, Nicholas’ drawings included a picture of his brother Matthew. Nicholas said he drew the picture so mom wouldn’t have to call Matthew so much.
July 11, 2005 Blood Counts:
WBC: 4.5
HGB: 11.3
PLTs: 171
ANC: 3,500
___________________________
Sunday, July 10, 2005 11:44 PM CDT
Day plus93
STILL LOTS OF DAILY MEDICINES AS NICHOLAS APPROACHES DAY PLUS100
Medically, this leukemia and bone marrow stuff IS NOT a short or mid-term regimen of medicine and treatment for everything to be back to normal. In fact, normal takes on a new meaning for Nicholas, mom & dad, his brothers, as well as family and friends around Nicholas.
Although we are approaching Day plus100—and overall approaching day 240—there are still multiple oral medicines and a few IV medicines that are administered every day, throughout the day. Mom continues do an incredible job of mixing, preparing, and administering the multitude of medicine for Nicholas. From taking out medicines at 3:00am, administering at 9:00am, 10:00am, taking other medicines out at 2:00pm and 3:00pm, administering at 8:00pm and 9:00pm, as well as administering oral medicines and vitamins throughout the day is one aspect of our now normal days. NO COMPLAINTS AS WE ARE ABSOLUTELY GOING TO DO ANYTHING AND EVERYTHING TO DRIVE NICHOLAS’ CURE.
From nurse, to teacher, to physical therapist, to what we love—being Nicholas’ mom & dad—we have no complaints about our new normal days. We are living and loving in many new ways and continue to be so thankful that God is directing this journey, and we are blessed to have you in our lives.
EVENING WALK, NOT ON A TRAIL OR IN A PARK
This evening mom & dad took Nicholas for a walk around Stanford Shopping Center’s outside mall, after it had closed so there were no crowds. And it was after the sun was brightly shining so it was very, very pleasant to be outside, strolling, running around, and laughing. There were water fountains, waterfalls, statutes of various types of characters, and beautiful flowers.
Listening to the music playing through the central sound system, Nicholas was dancing down the halls. Playing tag with mom was a beautiful sight, and he didn’t want to stop. As we left the outside mall, Nicholas got a ride on dad’s shoulders back to the RMH—fit for a king.
WHY WE ARE SO THANKFUL YOU ARE IN OUR LIVES
While we are thankful for the amazing progress Nicholas has made, we recognize this leukemia and BMT journey has many “slippery slopes” for all cancer patients. It is such a scary disease and with the process to cure Nicholas it generates so many other worries. Although our focus is on the cure, what is kept in sight is to fight the side effects through information, research, prayers and our loving God’s guidance.
We are so thankful for your prayers as your voices have helped us along this journey—your voices are heard and blessings generated. GUESTBOOK ENTRIES: Thank you for the guestbook entries, we really love hearing from you and your caring words offer love and encouragement. The entries are a wonderful testimony for Nicholas as he fights this fight now, and in the future see the love so many have had toward his cure.
July 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 9, 2005 11:56 PM CDT
Day plus92
A GOOD DAY ALL AROUND THE RMH
Nicholas’ Montessori teacher, Ms Shirley visited with Ms Suzette. Ms. Shirley did something that Nicholas loves to receive from her—she sat and read to Nicholas—see today’s home page picture. And while Ms Shirley was reading, mom had a relaxing time with tea shared with Ms Suzette on the immune wing patio.
Brother Chris came by for a visit, and dad went back to Lafayette for the evening and spent time with brothers Chris and Matt.
NEW PHOTO ALBUM
Today a new photo album about Nicholas’ journey was posted on the home page, toward the bottom, under Links.
The new album is titled “Day 132 leading to BMT and current pictures.” Following is a description of what you will see. Nicholas-Day 132 (before BMT) to Day 230 (which is Day plus90 regarding the BMT): 3/31/05 to 7/7/05:
At the Ronald McDonald House before checking into Stanford-Lucile Packard Children's Hospital for the BMT. This is Nicholas' journey continued, through the pre-BMT regimen and after BMT (where days are counted like Day +2 meaning 2 days after transplant understanding he had two Day 0s because the transplant on 4/7/05 went into 4/8/05), some troubling times, and the overall process. See his display of energy, strength, and continued passion for caring about others—even though he is going through all this "leukemia and bone marrow stuff" (as he calls it).
The story of Nicholas’ journey is revealed through the pictures (in chronological order) and captions below the pictures. Thank you for being part of Nicholas’ journey!
Note: The second album titled “Day 80-131 before BMT” was updated with photos not provided before. Combined the three albums, including the first one titled “The past 6+ months” (which are photos and captions before the diagnosis, through diagnosis, up to Day 79) provide a unique view of Nicholas overall journey.
July 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Friday, July 8, 2005 10:36 PM CDT
Day plus91
CONVERSATIONS WITH OUR ONCOLOGIST AT CHO HAS BEGUN
Nicholas’ doctor at Stanford-LPCH has talked with his oncologist at Children’s Hospital-Oakland (CHO) regarding the Day plus100 approach wherein there will be discussions about returning home to Lafayette (we have been at LPCH and/or the RMH since March 31). Our goal is to be able to have the follow up treatment at CHO where Nicholas was diagnosed and had his treatment before the BMT determination, and continued treatment until the BMT regimen.
The reason for the conversations is that Nicholas’ GvHD is still present, and because of that the follow up would normally be followed by the BMT doctor (at LPCH). Nicholas’ file will be reviewed by CHO and a personal examination of Nicholas by CHO will lead to the determination.
NOT MUCH OF AN APPETITE, HOWEVER, NICE DAY
As you have been reading, Nicholas’ appetite has been good and he has been eating and eating. Some of the eating is triggered by the Prednisone that has a side effect of an increased appetite. Today he did not have much of an appetite; however, he sure had an appetite for being with his friends in the immune wing of the RMH. He really enjoys playing with KJ and Jacob, and he misses former RMH guest Kaeli. Today was a nice day, although Kaeli did not come to visit, her mother and brother Seamus came by for a visit.
Note: We realized that the three BMT patients, Nicholas, KJ, and Jacob, who have been together at the RMH make up a unique trio. Three BMT patients with 3 different diagnosis and 3 different types of BMTs—Nicholas had a matched-unrelated donor, KJ had sibling donor, and Jacob had an autologous (use of the patients own cells).
WE ARE GRATEFUL FOR GOD’S LOVE THAT TOUCHES OUR LIVES IN SOME WAY EVERYDAY!
July 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, July 7, 2005 10:21 PM CDT
Day plus90 (Day 230 since Nicholas’ leukemia diagnosis)
LONG DAY AT THE HOSPITAL
Early start and late ending:
1) We started out in admissions at 8:30 this morning,
2) Then on to the clinic for lab work,
3) Then to the Pediatric Anesthesia Care Unit (PACU) for the procedures we stated in yesterday’s journal,
4) Then on to the recovery room,
5) Then the Day Hospital for two other procedures,
6) And finally on to the RMH around 7:00 this evening
PROCEDURES WENT WELL
The procedures were uneventful medically in that everything happened as expected (a good thing). Of course, WE WILL NOT KNOW THE RESULTS OF THE PACU PROCEDUREDS UNTIL THE TIMES STATED YESTERDAY. However, our doctor commented about the marrow draw. She said the fluid was clear, marrow came out smoothly, and it appeared to be a good sample—it looked very cellular.
Nicholas came out of the anesthesia immediately upon arriving in the bubble room within the recovery room. And he immediately had a question. He asked the nurse what was going on because he heard a lot of very, very loud screaming and crying. The nurse explained that the other beds in the recovery room were full, and some of the patients were having a hard time coming out of the anesthesia.
Who knows what Nicholas was thinking! We can only imagine what he was sensing. But mom & dad were right there to comfort him, as he comforted mom & dad just by us being with him.
Chemestry panel, including liver function and kidneys do not reveal anything alarming.
July 7, 2005 Blood Counts:
WBC: 4.5
HGB: 11.1
PLTs: 168
ANC: 2,740
___________________________
Wednesday, July 6, 2005 11:07 PM CDT
Day plus89
RASH ON LEGS IS GvHD
Nicholas’ Cyclosporine level is in range at 279—GREAT—HOWEVER, the rash on his legs is GvHD and is spreading. It has moved down to his ankles. So with the Cyclosporine being in range, it was determined that Nicholas’ body was not ready for the Prednisone reduction (steroid, that was helping to manage the GvHD) so beginning tonight we are increasing the Prednisone dose back to 5ml (15mg). Overall, the indication is that Nicholas will have to be on the Cyclosporine and Prednisone longer than expected. Note: When we are able to start reducing the Prednisone, it will have to be very, very gradual because of the flare up Nicholas is experiencing.
TWO VERY IMPORTANT PROCEDURES / TESTS TOMORROW (Thursday)
1) Tomorrow Nicholas will go to the operating room for the last of five lumbar punctures and intrathecal, injection into the spine, Methotrexate chemotherapy. These five make up the last of the chemotherapy Nicholas should forever need to receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen before the BMT, are destroyed.
2) Also, the last of three bone marrow aspirations will be performed as part of the 100-day BMT regimen. Nicholas will have other bone marrow aspirations at 6 months post BMT and 12 months post BMT. The results of tomorrow’s procedure should be known in 2-3 weeks. These three are to confirm that he is still in remission. Marrow will be used for a Cytogenetics test-DNA indexing to confirm that there are still no hypodiploid cells (reason for the BMT). Results of the first two were negative—GREAT.
2a) And, marrow will be drawn for a DNA Chimerism test discussed in the April 27th journal. The results should be known in 1-2 weeks. The test reveals the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells. The first one on May 11 revealed that 95 percent were donor cells—great start—and the second one on June 6 revealed that 98 percent were donor cells. WE ARE PRAYING that tomorrow's test will reveal that it is at least 98 percent or higher (we need to have it going up, not down).
QUOTE FROM NICHOLAS
Following is a quote Nicholas said today after his doctor informed us that she would be calling his Children’s Hospital-Oakland (CHO) doctor regarding Nicholas GvHD, going home soon, and the follow up care that he will need. She wants to determine if it could be performed at CHO considering the GvHD versus coming all the way back to Stanford-LPCH. After saying she would be calling our the CHO doctor, Nicholas said, “There is a phone right there that you can use.” It appears Nicholas wants to expedite the process (understandably).
AFTERNOON FILLED WITH FUN
Water guns, play structure climbing, kick ball, and chalk writing on cement were the activities this afternoon. MOM & DAD ARE THANKFUL that Nicholas’s energy and strength enables him to push and sail through a lot of the good and bad news linked to the various stages and overall BMT process. AND THANKS, EVERYONE, FOR KEEPING NICHOLAS IN YOUR PRAYERS!
Please click on View Photos.
July 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Tuesday, July 5, 2005 11:18 PM CDT
Day plus88
EXAMINATION TOMORROW TO ASSESS THE RASH
The good thing is Nicholas’ Cyclosporine level was in range yesterday lessening the concern over the rash on his inner knees. Although planned for today, tomorrow Nicholas’ doctor will examine the rash, and Cyclosporine labs will be drawn to determine its level. We have been waiting for a very, very long time for the Cyclosporine level to remain in range for more than a couple consecutive days. However, as we stated recently, we are not holding any numbers to dictate Nicholas fate—we are firmly rooted in God’s omnipotence, omniscience, and omnipresence as the author of Nicholas’ journey. And there is no better author.
GOOD DAY
Nicholas had a good day with other RMH guests. Mom called the doctor and Nicholas left his own message for the doctor. Nicholas message was a request to be able to eat a Bologna sandwich and at the end of the message he said, “Have a nice day, and tell everyone I said hi!” Our doctor called back leaving a message that he can have a half Bologna sandwich today and during the examination tomorrow determine if he could begin to have a whole Bologna sandwich. And Nicholas’ cheeks, inflated as a result of the Prednisone, rose up as much as they could as he smiled hearing the reply.
July 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, July 4, 2005 5:17 PM CDT
Day plus87
*QUICK UPDATE*
SLIGHT CONCERN AT THIS MOMENT
"Any new rash or worsening or changes in an existing skin rash" is an explicit reason for mom & dad to "Immediately notify the BMT Service" at Stanford-LPCH. There is a new rash on Nicholas’ legs, inner knee area.
This morning’s blood samples were analyzed and the lab work just came back revealing that the Cyclosporine level is in range—EARLY FIREWORKS OF CELEBRATION FOR US RIGHT NOW. The concern was around a GvHD flare up if the Cyclosporine level was low. Tomorrow Nicholas will be examined to determine any action to take regarding the rash on his inner knees, knowing that the Cyclosporine level is in range.
It’s like “fire drills” when even the most normal occurrence of injury or conditions surface for BMT patients. And it’s a calm fire drill mode that mom & dad go into. We do not want to over react AND we do not want to overlook even issues that may seem trivial.
Nicholas' spirit is GREAT and we are all over the RMH immune wing doing various things. We are planning to find an optimal spot overlooking the Port of Redwood City tonight, which is about 7 miles away, to view a fireworks show billed as spectacular. We will have a good 4th of July!
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Sunday, July 3, 2005 11:46 PM CDT
Day plus86
NICE DAY
Nice day listening to music (with mom & dad), picnic (on the bed), talking on the phone (with family and nanny), playing basketball (with dad, live not a video game), playing with KJ (RMH guest), putting together puzzles (with mom), drive in the car (of course, with mom & dad), and package from Nicholas' Diablo Valley Montessori School (including a hand made 4th of July poster).
HAVE A GREAT 4TH OF JULY EVERYONE!
JuLY 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 2, 2005 11:17 PM CDT
Day plus85 (Day 225 since Nicholas’ leukemia diagnosis)
NO LABS, NO CLINIC, NO HOSPITAL
No, No, No have never sounded and felt so good! We are grateful that there was no lab work today including Cyclosporine analysis revealing that it was out of range. Because we are grateful that he is feeling fine and looking good—we are striving to be just fine regardless of Cyclosporine being out of range.
It was very nice to not have to get up early for a clinic appointment, and it is great that there is no reason for Nicholas to be in the hospital.
GOD IS A LOVING GOD
We are not just optimistic, we are firm in our knowing that God is a loving God and he is watching over his child, Nicholas. What a blessing to have God over us as our provider and protector. He has provided so many blessing, including all of the amazing things that we have witnessed in and through Nicholas. He has protected Nicholas as well as mom & dad, and our other three boys in many ways during this journey. Our God is a loving God—His love is EVERYTHING.
VERY NICE START OF THE WEEKEND
Friends, friends, friends kicked off our weekend and FRIENDS, we thank and love you for your beautiful gifts of caring and loving in person, on the phone, and on this CaringBridge site's guestbook. Thank you!
Please click on View Photos.
July 2, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, July 2, 2005 1:04 PM CDT
___________________________
Friday, July 1, 2005
Day plus84
FRIDAY
Friday was a very nice day for Nicholas. Nicholas gathered two of the other BMT patients (KJ and Jacob) and off they went throughout the immune wing at the RMH.
THREE BMT PATIENTS LIVING IT UP
They were in the playroom putting together puzzles, playing board games, and they acted out (played) restaurant. The playroom is set up like a combination school room and kitchen--so the three boys acted out being in a restaurant taking turns performing different restaurant roles.
They were in the family room playing, you guessed it, video games. Although KJ and Jacob are 7 years older than Nicholas, these three boys spend quality time together that is age relevant, balanced, and blended enabling them all to be fully engaged and challenged. They say they are "surrogate brothers" based on their shared BMT limitations although each of them have a different diagnosis.
SHARING HIS FOOD WITH A PATIENT STILL IN THE HOSPITAL, REALLY
Remember, Kaeli, the other guest/patient at the RMH? Well, she is back in the hospital and she and her mother called mom because Kaeli really liked mom's baked chicken. But mom's baked chicken is not only a favorite of Nicholas', it is a staple food that he can have a lot and he enjoys it a lot.
So when Kaeli called for some chicken, Nicholas and mom drove to the hospital (across the street) meeting Kaeli's mom to drop it off. They were so thankful--Kaeli was waiting all afternoon for the chicken. Nicholas said, "I just think it is nice to share."
TIME WITH JUST MOM & DAD
Mom, dad, and Nicholas went for a short drive around the Stanford campus and down University Avenue enjoying the sites and sounds. At one point when we were at a stop light and listening to some musicians on the corner performing, Nicholas said, "Would you please roll up the window because I can smell the food."
TODAY
There are several visitors from home planned for today, and dad is going home this afternoon to spend time with two of our other sons.
JuLY 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Thursday, June 30, 2005 11:40 PM CDT
Day plus83
GUESS WHAT IS OUT OF RANGE?
Yes, you guessed it! The Cyclosporine is out of range again—it is high at 338. Tonight’s Cyclosporine dose will be reduced from 75 to 70mg. Enough said about this, you know our worries about Cyclosporine being out of range.
SO GUESS WHAT IS STILL IN OUR REACH—A BLESSING WE ALL SHARE?
We are thinking about what has been constant along Nicholas’ journey, what has always been in our reach. There is something we have counted on no matter where we have been on this journey. This journey that has proven to have some slippery slopes along with solid steps. As hard as humanly it is to face a lot of these challenges, we are thankful for the Lords promise to “always” be there in ways we sometimes fully recognize “out of the moment.” We are reminded to “Be still, and know that I am God!”
We are blessed to have God in our reach and always reaching to us. So, as hard as it is to face these slippery slopes of the journey, we know to trust in God and His plan.
AND WE ARE BLESSED for God lovingly continues to be our guide. Today, He has guided some wonderful blessings:
1) Cytogentic results are negative—no Hypodiploid cells (the reason for the BMT).
2) Overall lab results from today had good results.
3) Nicholas continues to look better and better, in spite of the Cyclosporine level today
June 30, 2005 Blood Counts:
WBC: 4.7
HGB: 11.2
PLTs: 155
ANC: 3,500
___________________________
Wednesday, June 29, 2005 11:52 PM CDT
Day plus82
BROTHERS, FRIENDS, AND FRIENDS
Two of Nicholas’ 3 brothers, friends from home, and friends from RMH made Nicholas “feel good” today. From morning until early evening he was asking for the time his brothers would arrive, and checking the time and waiting for them to show up. When they did, …he fell asleep for a couple of hours. And when he awoke the play and fun was on—although it was a short period of time before they left for home (our home in Lafayette).
LABS TOMORROW AND A CONVERSATION ABOUT HOME
We PRAY that lab work tomorrow will reveal what mom & dad sees illuminating from Nicholas, that everything looks and is good. We PRAY that the numbers are congruent with the facts of his wonderful display of happiness and love.
The general target date for going home is Day plus100 and that day—July 17—is approaching. So tomorrow we will begin that conversation and check in on whether or not July 17 seems medically reasonable. We are still waiting for Cytogenetic results.
June 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, June 28, 2005 11:09 PM CDT
Day plus81
ANOTHER HAPPY DAY
No lab work was done today, however, it was another happy day for Nicholas. We are PRAYERFUL that his Cyclosporine will remain in range and the other lab results will reveal favorable results. Note: Next appointment for lab work is Thursday.
As always, Nicholas’ strength, joy, and endless passion for caring about others was constant today. His energy and enthusiasm remains high. It is a blessing to know and be able to remind everyone that his energy and enthusiasm has only been low a handful of times—after all that he has gone through since the November 19, 2004 diagnosis, the several hospital stays for chemotherapy, the BMT including pre and post regimen, and the Cyclosporine challenges faced. AMAZING is God’s love so not surprisingly, amazing is how Nicholas has been through His love.
PLAY DATE WITH MOM AT THE PARK
Nicholas and mom went to a park this afternoon for a play date, just the two of them. They picnicked, played with water guns, and played with...well lets say “talking pipes” communicating fun stuff back-and-forth on opposite ends of the play area. He was so eager to tell dad all about his time at the park with mom.
AND when dad arrived at the RMH, Nicholas was still very playful as he began a one-sided game of hide-and-seek—well hide from dad. The evening closed with a quick game of basketball and reading.
June 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, June 27, 2005 11:43 PM CDT
Day plus80 (Day 220 since Nicholas’ leukemia diagnosis)
HAPPY, HAPPY DAY:
CYCLOSPORINE BACK IN RANGE AND CHEMICAL PANEL LOOKS GOOD
Cyclosporine is back in range at 291; and overall the chemical panel looks good including the factors linked to the liver and kidneys. It’s a day to celebrate! Nicholas is looking really good and we are so grateful for God’s love that never stops flowing into our lives and throughout Nicholas. Even during tough times, His love fuels Nicholas’ strength and positive “way of being.”
Nicholas had a full day of play with two older BMT patients (KJ and Jacob). In the hallways of the immune wing and in the family room there was laughter, fun screams, and the sounds of boys at play.
Please CLICK ON VIEW PHOTOS to see Nicholas and other patients at play.
STILL WAITING FOR CYTOGENETICS RESULTS
June 27, 2005 Blood Counts:
WBC: 3.7
HGB: 10.6
PLTs: 150
ANC: 2,700
___________________________
Sunday, June 26, 2005 11:40 PM CDT
Day plus79
BEAUTIFUL SUNDAY
Nicholas spent Sunday surrounded by love and uneventful medically. He played with KJ (another RMH guest), Kaeli (a recent RMH guest who is now at her home), and one of his big brothers. Mom & dad took turns playing and teaching Nicholas throughout the day.
And he enjoyed his food all day long—frosted mini wheat cereal with Lactaid (he can not have any dairy products yet), waffles, salami sandwich, apple juice, popcorn, Cheerios with Lactaid, baked chicken, steamed white rice with chicken broth, Lactaid, white bread with strawberry jelly, more apple juice, banana, frosted mini-wheat cereal and baked chicken again.
CAN YOU BELIEVE THAT MOM LEFT THE RMH
Blessings come to us from everywhere and many times repeatedly from friends who have been so much a part of Nicholas’ journey. Today, mom was invited to “Tea” with a family friend visiting another acquaintance who is a patient at Stanford. They had a beautiful afternoon; and dad and our boys “hung out.” Friends have been so very, very special to us in so many, many ways—we are blessed to have all of you in our lives the way you have been—thank you.
TOMORROW
Early morning appointment for lab work—WE PRAY the Cyclosporine is in range and his chemical panel continues to show good signs and improvement.
We should be getting the Cytogentics results any day. WE ARE PRAYING that the results confirm that there are still no Hypodiploid cells (reason for the BMT). Results last month were negative—GREAT.
June 26, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
__________________________
Saturday, June 25, 2005 11:18 PM CDT
Day plus78
APPEARING GREAT IN SPITE OF HIGH CYCLOSPORINE LEVEL
Although the Cyclosporine level is out of range, amazingly his skin looks pretty good and his gut seems fine based on his stool, eating pattern, and no pain. His next Cyclosporine lab work is Monday so we will not know chemical panel outcomes until then (including liver enzymes and kidney function).
FIRETRUCKS AND FIREFIGHTERS
Little boys and girls seem to enjoy being able to see, up close, fire trucks and today Nicholas was able to do just that. The Palo Alto Fire Department barbequed for the RMH and had the full fleet of one station on scene. Although Nicholas was not able to eat the food (remember he is on a BMT diet and cooking environment is critical for these patients), he was able to have a special tour of the fleet of fire vehicles. PLEASE CLICK ON “VIEW PHOTOS” to see Nicholas enjoying Saturday afternoon as well as a photo with a visitor at the RMH entertaining kids through making clown hats.
DAY-BY-DAY, BY DAY
We have been on this journey for a cure for over 200 days. Through Thanksgiving, Christmas, New Years, Nicholas’ 5th birthday, family and friends’ birthdays, his pre-school graduation (happily, remember the special ceremony he was able to attend thanks to the wonderful people at Diablo Valley Montessori School in Lafayette), his three brothers’ high school football & basketball games and college basketball games, his brothers’ college graduation, and so many missed outings, events, and time just passing time.
AND day-by-day, by day we have been blessed to have God’s love—protecting and providing for Nicholas, mom & dad, and our three other sons. We have been blessed to have so many outings, events, and time just passing time with all this “leukemia and bone marrow stuff” that has strengthened our love and passion for God, our family, our friends, and the many new acquaintances on this journey as part of the rest of our lives!
June 25, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, June 25 2005 2:52 AM CDT
Friday
Day plus77
IT'S OUT OF RANGE AGAIN—CYCLOSPORINE
The Cyclosporine level today is high at 368—out of range again. So, tonight the IV dose was reduced from 80 to 75mg. WE ARE NOT DISCOURAGED: Truly, God has been and is amazing. There are so many, many reasons we see day and night in and about Nicholas for us to give praise to God. And we praise God knowing that He is seeing Nicholas through this journey His way.
FUN, FUN, FUN DAY FOR NICHOLAS
Nicholas was out of his RMH room morning, noon, and night. Dad returned to the RMH just before midnight and Nicholas and another RMH guest, KJ, were having a nice evening with their moms in the family room.
Note: Dad's mom had a long, however, successfull heart surgery to receive a pacemaker. She came out of recovery calmly with only a little pain in her left arm where the pacemaker was placed. Mom, grandmom, coming out of recovery was asking about her grandson Nicholas and daughter-in-law Sheila—amazing.
___________________________
Thursday, June 23, 2005 10:40 PM CDT
Day plus76
REAL QUIET DAY
This morning started out very early for Nicholas as well as dad. Nicholas awoke at 5:00am as dad was getting ready to go to work. After saying good morning, what do you think was the first thing Nicholas asked? …“Can I have something to eat?”
After Nicholas’ early start, he and mom spent a good portion of the morning in the RMH play room playing a variety of games, drawing on the chalk board, working with blocks, and spelling.
Late afternoon, a clown came to visit the few kids in the immune wing of the RMH. The clown helped the kids make some pretty interesting hats. Shortly after Nicholas made his hat he was doing some artwork. While another patient (KJ) was making his hat, he burned his finger on a glue gun. Nicholas then gave his artwork to KJ to make him feel better. And for the third kid, Nicholas drew a picture of a big bag full of money.
The evening was quiet as well. Nicholas and dad were pretending to be Power Rangers and then played some basketball. Close to bedtime, mom was reading a book to Nicholas. The book, “Goldilocks and The Three Bears" the retold story. So, this day was pretty much like a day any kid would share with their parents. It was quiet, full of love, laughter, play, and teaching.
We thank God for this wonderful day and his wonderful blessings.
TOMORROW (FRIDAY)
Early morning appointment for lab work—we pray that the Cyclosporine is still in range. It will be GREAT to have three straight days of it being in range, as well as having the liver and kidney levels re-checked and showing improvement.
Note: Also early tomorrow morning (Friday), dad’s mom will be undergoing surgery to receive a pacemaker. Would you please pray for God’s love working through the hands of the doctors and comforts mom (Eva).
June 23, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
__________________________
Wednesday, June 22, 2005 11:29 PM CDT
Day plus75 (Day 215 since Nicholas’ leukemia diagnosis)
CYCLOSPORINE IN RANGE
We are so happy that today Nicholas’ Cyclosporine level is in range at 256. Truly, we know that God’s omnipotence, omnipresence, and omniscience is at work all around and within Nicholas. He continues to guide and “shield” Nicholas. We PRAY that the Cyclosporine level remain in range as it has not remained in range for consecutive days for a long, long period of time. Friday, labs will be drawn to check the level again.
LIVER ENZYMES IMPROVING
Nicholas’ chemical panel shows that the levels of his liver enzymes are improving.
WATCHING THE FUNCTION OF HIS KIDNEYS
The Bilirubin reading in Nicholas’ blood work today came back too high so the doctors are closely monitoring this concern. The kidneys can be negatively impacted when the Cyclosporine level is high.
OUR NICHOLAS
Nicholas remains in good spirits. Remember, the Prednisone makes him really hungry. Today, he was able to add Frosted Mini-Wheats to his diet. Occasionally he says, “Can you make me something to eat. And can you make it snappy; thank you!” Or when he has reached his limit on food quantity he says, “Mommy, moms are supposed to feed their kids so why aren’t you feeding me?” For those of you who know Nicholas, you know he consistently has a very polite way of asking and doing things. However, with the limited diet choices and volume coupled with receiving Prednisone (that makes him hungry), we occasionally have to remind him of his tone of voice. Our “parenting” continues because our approach to “all of this leukemia and bone marrow stuff” is that this is just a journey with many more life journeys to come. So, parenting continues so he comes off this journey as he went on it in terms of his behavior.
And you know what, we know that we are blessed to have Nicholas be the way he has been, and actually learn from him every day!
June 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, June 21, 2005 10:01 PM CDT
Day plus74
NICE QUIET DAY
Nicholas enjoyed a nice quiet day playing with another RMH guest, KJ, and friends from school. There were no medical appointments today so he and mom were able to sleep in. When dad arrived home from work, the first thing Nicholas (well, mom too) told dad was that they finally beat the Jimmy Neutron Play Station 2 game. They were really, really proud of their achievement. And, so was dad. Proud of their trying and learning new things, proud of their working “together” through some pretty frustrating moments “in the game,” and proud that they find ways to really put aside all of this “leukemia and bone marrow stuff” and just enjoy the days.
TOMORROW
Well, one day of sleeping in is enough for Nicholas and mom, early tomorrow morning Nicholas will be in the clinic for Cyclosporine lab work. We are PRAYING THAT THE LEVEL IS IN RANGE. The previous journals chronicle this story so many of you know the importance of the level being in range, the strength that Nicholas has shown through this ordeal, and the frustration and troubling experiences mom & dad have witnessed with it being out of range.
But tomorrow, like today, we will be thankful and feel the many blessings that God has provided for us. We are blessed that God is a loving God encamped around us so nothing do we fear. It is, certainly, not easy living this journey moment by moment, day after day, and month after month. However, moment after moment, day after day, and month after month we have been blessed with His love, your love & prayers, and your care & support.
June 21, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________
Monday, June 20, 2005 11:23 PM CDT
Day plus73
CYCLOSPORINE LEVEL IS TROUBLING-TOO HIGH, TOO LOW
We have talked about the battle to get Nicholas’ Cyclosporine level in range for quite some time now. The battle continues and has gone from frustrating to troubling. It is so important to have the Cyclosporine in range for its therapeutic value—to guard against GvHD of the gut, liver, and skin. And so we can continue to taper down the steroid dose. Today’s level is 409, high and out of range. Three of the last four levels have been high out of range, the other one low out of range: 500plus, 404, 167, and 409.
Our doctors are reaching out to the medical community toward uncovering a solution to this troubling problem. We are skipping tonight’s dose and will reduce tomorrow’s from 85mg to 80mg.
TODAY’S PROCEDURE
The lumbar puncture and IT Methotrexate procedure went well today. Nicholas recovered beautifully, waking up in a calm and peaceful way. After saying “hello,” he asked if he could eat. We were prepared and so he ate, popping cereal in his mouth and devouring a bagel.
CHEMICAL PANEL
Levels for the kidneys function are normal. Levels for the liver function are still high but coming down.
LONG AND HARD STRETCHES OF THE JOURNEY
Nicholas is more than doing his part on this journey. His energy, enthusiasm, spirit, strength and overall outlook on this journey continues to be amazing. Really, amazing! He is doing all the right things.
For mom & dad, the struggle is so hard and it takes a toll on us physically as well as emotionally. Emotionally, we are blessed with support we have received from many of you. Physically, we are trying to make the time to exercise; however, the physical toll on our bodies from the emotional drain is an area for us to better manage.
THANKFUL
Nicholas, Chris, Tim, Matt, and mom & dad are thankful for the ways that you touch our hearts through prayer, guestbook entries, and general support of household tasks while we have been away.
And thank you to those of you who have looked into other ways to support us on the next phase of the journey. Including our coming home, hopefully just after mid-July (Day plus100).
June 20, 2005 Blood Counts:
WBC: 2.8
HGB: 10.5
PLTs: 216
ANC: 2,083
Sunday, June 19, 2005 11:47 PM CDT
Day plus72
CYCLOSPORINE AND NICHOLAS’ DEMEANOR
In spite of Nicholas’ Cyclosporine level being low and out of range, he looks GREAT, his skin looks so much better, and he had a good weekend! THE LOW LEVELS AND BEING OUT OF RANGE IS FRUSTRATING. Thankfully, his energy and enthusiasm is high. Tomorrow the Cyclcosporine level will be checked again.
IT METHOTREXATE TOMORROW
Tomorrow, Nicholas will go to the operating room for a 4th of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. These five make up the last of the chemotherapy Nicholas should—forever—receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen before the BMT are destroyed. The five are being done every two weeks.
POST CT SCAN
No fevers or other signs of infection so this is a good indication that the small area noticed in the left lung is not some type of fungus (June 17 journal). We pray that it is just post inflammation and dissipates—follow up continues.
THANKFUL
We are thankful that God, is a loving God. We are thankful that just calling out His name brings about peace and comfort. That His name quells our anxiety over all that Nicholas is going through, all that mom & dad are going through, and that He is our comforter and protector.
CYTOGENETIC RESULTS EXPECTED THIS WEEK
This week we expect to receive results from the June 6 marrow draw for Cytogenetics, DNA indexing to confirm that there are still no hypodiploid cells (reason for BMT).
June 19, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, June 18, 2005
Day plus71
CYCLOSPORINE LEVEL LOW
Nicholas’ Cyclosporine level is now 167, low and out of range. The IV dose was increased tonight. This is SO, SO FRUSTRATING because we have not been able to keep it in range for more than a couple of days. 404 yesterday and 167 today—this worries us. And with it being low and out of range, there is greater risk of GvHD becoming more prevalent.
June 18, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Friday, June 17, 2005 9:40 PM CDT
Day plus70 (Day 210 since Nicholas’ leukemia diagnosis)
OUT OF THE HOSPITAL, BACK TO THE CLINIC TOMORROW
This afternoon Nicholas was discharged from the hospital following results of the CT scan. He will return tomorrow morning to the clinic for lab work—check his Cyclosporine level.
CT SCAN
Sinus results: Negative (good).
Chest results: There is a small—very small—area on the left lung near the middle that was discovered. At this time the finding does not reveal an issue, it could be post inflammation from a previous virus (such as the possible cause of the fever Nicholas contracted on June 1 when he was also hospitalized). The doctors will “watch” this very closely.
We will be watching for sings of fungus, like coughing or contracting a fever again. If it is fungus there are IV medications to administer toward curing it. If it is fungus and the medications do not cure it, the extreme treatment (again extreme, not next steps) would require surgery to extract that portion.
CYCLOSPORINE IS STILL HIGH
Today’s Cyclosporine level is 404—still high and out of range. It appears that it is truly high and not an artificially high number as a result of contamination as referenced in yesterday’s journal. (Contamination: If the blood sample was drawn from the same lumen (IV-like line) in his Broviac—central line in his chest—used to administer Cyclosporine, the lab results could reveal a high level because the Cyclosporine tends to stick to the lumen. So when blood is drawn from that lumen, in addition to the Cyclosporine level in the blood, it could pick up Cyclosporine in the lumen. OKAY, CAN YOU REPEAT WHAT WE JUST WROTE?)
CYCLOSPORINE-WHAT A STRUGGLE, AND WE HAVE THE FEVERS AND LUNG CONCERNS
Because the level was significantly high again, this morning’s dose was not administered. We will continue administering it tonight at a lower dose (75mg versus 85mg). The struggle continues to be getting it in range, and keeping it in range. In some patients doctors would probably hold tonight’s dose as well; however, the experience with Nicholas prompts us to think that it could drop significantly and become low and out of range which would not be good because of GvHD. We do not know what caused the high level.
Remember, having the Cyclosporine level in range is important toward managing GvHD to the skin, gut, and liver. GOOD NEWS: Nicholas’s skin GvHD is improving and we may be able to decrease the Prednisone (steroid) on Monday. The Prednisone has been helping to treat the skin GvHD.
So back in the clinic early tomorrow morning, and into the operating room Monday morning for the fourth of 5 IT Methotrexate procedures—we will remind you about this Sunday night. We PRAY for continued healing and give praise to God because Nicholas has truly been amazingly strong and full of spirit.
June 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, June 16, 2005 11:56 PM CDT
Day plus69
STILL IN THE HOSPTIAL
Nicholas is still in the hospital resulting from the fever he contracted Tuesday and mom & dad are with him loving, coaching, and working to keep his spirit high. His last fever from this stay in the hospital was Wednesday night.
AND NOW THE CYCLOSPORINE LEVEL IS “WAY” OUT OF RANGE
Today’s Cyclosporine level is above 500, astronomically high and out of range (240-310). Labs will be drawn tomorrow, perhaps from a vein versus from the central line in his Broviac. It could be that the labs drawn today from the central line were contaminated. PLEASE PRAY WITH US that Nicholas continues to regain his health. And please pray that our little sunshine continues to shine brightly—shining light on our loving God.
CT SCAN
The CT scan of Nicholas’ chest and sinus area was completed tonight. Results should be provided tomorrow morning as we try to uncover the source of the fevers that Nicholas contracted Tuesday and Wednesday. So far the blood cultures have come back negative (a good thing), but still leaves us wondering, why the fevers as it was 13 days prior that he was hospitalized for a few days due to a fever.
AND YES WE ARE THANKFUL:
Our loving God is all around Nicholas, shielding and guiding his journey.
Nicholas’ spirit is unfettered from all of this “leukemia and bone marrow stuff.”
Nicholas warms our heart through every glance at him, and glances from him.
Our three other boys understand the level of attention given to Nicholas during this time.
CYTOGENETICS
We are still awaiting results from the June 6 bone marrow draw for Cytogenetics, DNA indexing, to confirm that there are still no hypodiploid cells (reason for the BMT). Remember, results last month were negative—GREAT.
REFLECTION
Please click on "View Photos" for a reflection of the BMT segment of Nicholas' journey.
NOTE: Dad’s mom is in the hospital and she will receive a pacemaker next Friday. Would you please pray for her comfort and a harmonious journey.
June 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, June 15, 2005 11:40 PM CDT
Day plus68
STILL IN THE HOSPITAL
Fevers for BMT patients are serious. Nicholas’ fever yesterday that caused him to be re-admitted into the hospital broke shortly after admission. This afternoon he had a fever again, it broke for a few hours, he had a fever this evening, and it broke later tonight. While cultures have been taken and are being analyzed, a CT scan has been ordered for tomorrow to provide more information to help determine next steps. The doctors want to rule out any fungus that may have settled in based on Nicholas being immunosuppressive for the long period of time that he has, linked to the process including immunosuppressive side effects of Cyclosporine and Prednisone.
BUT THE CYCLOSPORINE LEVEL IS IN RANGE
Today’s Cyclosporine level is in range at 274. We are thankful and PRAY that it can be kept in range to provide the medical protection against GvHD.
NICHOLAS IS INSPIRING AND WE THANK GOD
Nicholas’ spirits remain amazingly high. The way he handles everything that is going on is inspiring to us: being away from home, family, and friends; being limited in activities and places to enjoy; nurses and doctors probing, examining, and their actions; medicines he has to take orally and through IV; lab work; tests; etc. The learning through all of this “leukemia and bone marrow stuff” has not yet fully been realized and we are thankful for the learning. We are thankful for the growth in God, family, friends, and love. We are thankful for all these things and the listening to God for wisdom to take the right action and make the right decisions.
It's getting late and we are tired. We prepare to end this night with thanks that our little sunshine, Nicholas, is glowing with love and passion for caring about others. His journey does not deter his focus on others. And we are thankful for “others,” all of you who are praying with us and focusing on Nicholas.
June 15, 2005 Blood Counts:
WBC: 4.6
HGB: 10.6
PLTs: 202
ANC: 3404
___________________________
Tuesday, June 14, 2005 9:54 PM CDT
Day plus67
BACK IN THE HOSPITAL
Nicholas has spiked a fever and we are back in the hospital.
While we know that this leukemia and bone marrow journey is just that, a journey, the process is so hard emotionally and physically. And good days and challenging days are part of the process—but it doesn’t make it any easier knowing it. Living it is hard and there are moments that mom & dad become afraid.
And we are reminded of the following:
I walk with God along the way,
And oh, it is a joyful, dominion day.
No more I suffer cruel fear,
I feel God’s presence with me here.
The joy that none can take away is mine,
I walk with God today.
Significantly more times than not, seemingly Nicholas does not have to fight the challenging days as God is blessing him with an amazing sprit enabling him to navigate through them. When we told him we had to go back into the hospital, Nicholas just said, “How long?” And he kept on playing.
Well, we are now off to the hospital—PLEASE, PLEASE PRAY FOR NICHOLAS’ CONTINUED HEALING.
June 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, June 13, 2005 11:53 PM CDT
Day plus66
CYCLOSPORINE IS HIGH
The Cyclosporine level today was out of range at 342, high. Not good, but the good news is that we did not need to have the conversation about adding another medicine that would further suppress Nicholas’ immune system and make him more at risk for infection. It needs to be in range to be therapeutic. However, because it was high—not low—the medicine is at least in his system and at work. We do need to get it in range so beginning tonight we reduced the dosage to 85mg versus 90mg. Next set of lab work will be Thursday.
OTHER CHEMISTRY LEVELS WE HAVE BEEN SHARING
Liver: Levels are still high but they are coming down.
Kidneys: All levels are in range
REDUCING THE STEROID DOSAGE—GOOD NEWS!
The doctors were very, very pleased with Nicholas’ “clinical” state (that is the way he is looking, his energy level, his strength, his progress, etc.). And his skin is looking so much better. So, tonight we were able to reduce the steroid amount administered. It’s now 18mg versus 21 mg—tapering down has begun and we are so happy about this.
HIS DIET IS EXPANDING
Signs that Nicholas is continually healing from the gut GvHD, today the doctors expanded his diet to include: Mustard (for his salami sandwiches), lactose free cheese (in addition to lactose free milk he started consuming a little over a week ago), a little marina for pizza, biscuits, bread sticks, pickles (3 baby kosher dills per day), oranges, apples, canned peaches or pineapple, pinto beans, and cooked herbs in his food for flavoring. These items are in addition to those stated in the May 31 journal.
THE FIRST THING NICHOLAS TOLD MOM ABOUT HIS EXPANDED DIET
“Let’s go home, I want to have my pickles and I want to have my pizza.” By the way, to ensure there is no bacteria exposure, the items he is able to have need to be cooked, fresh, at home. No restaurant food because of the lack of control over how the food is prepared and cooked.
THE FIRST THING NICHOLAS TOLD DAD ABOUT HIS EXPANDED DIET
The first thing Nicholas told dad, who was at work, was can you buy some pickles and pizza on your way home.
LOVING GOD AND FAITH IN HIS WORD
God gives us gladness, comfort, and peace. Through Him, only, do we find the strength…we’ll find everything that enables us to push, fight, and have moments of happiness.
June 13, 2005 Blood Counts:
WBC: 4.1
HGB: 11.0
PLTs: 197
ANC: 3,230
___________________________
Sunday, June 12, 2005 10:25 PM CDT
Day plus65 (Day 205 since Nicholas’ leukemia diagnosis)
FUN
Nicholas had a great day with mom & dad's niece, Stephanie, and a couple of our friends and their daughters. They played, and played, and played: Duck-Duck Goose, Hide-And-Go-Seek, "House" in the playroom, and lots of just running around at the RMH. (Please click on View Photos)
TOMORROW
Our prayers are that Nicholas' Cyclosporine level is in range as well as the liver chemistry. We are so fortunate to have good days and so fortunate to know that through God we will have good days. We focused on fun today and didn't spend much time thinking about "this leukemia and bone marrow stuff."
June 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Saturday, June 11, 2005 11:59 PM CDT
Day plus64
GOOD DAY
Good day, Nicholas had much more energy than what he’s had this past week. He didn’t even take 1 nap, he has been taking 3 lately. He’s definitely on the mend again. And his skin looks so much better.
DAD WAS GONE FOR THE EVENING—NICHOLAS’ OLDEST BROTHER GRADUATED FROM COLLEGE
Dad was off celebrating the graduation of Nicholas’ oldest brother, Chris, from UC Santa Cruz. Mom & dad are so very proud of Chris, he has done a tremendous job of earning very good grades, playing 4 years of basketball, and training hard in the off season. We couldn’t be more proud.
It was nice for dad to see all of our friends and family that came to celebrate Chris’ success, we haven’t been able to see many of them as often as we like. It was a great evening mixed with emotions of celebrating Chris’ achievement and mentally caring for Nicholas’ daily achievements. We know balancing being "there and here" are natural feelings for parents under any circumstance. And this one is so hard because of the complex emotional challenges under this leukemia circumstance.
Mom & Nicholas couldn’t be there as Nicholas cannot travel beyond 15 minutes of the hospital. Web cameras were connected so everyone could interact and Nicholas & mom really enjoyed it, a lot.
No clinic or day hospital all weekend, two days off from getting up and out early, what a nice treat. We’re anxious to see what his Cyclosporine level will be on Monday and hope it has maintained a therapeutic level so we can start tapering off the steroid—it makes Nicholas hungry 24/7. And with a limited diet, it’s hard trying to be creative with his food. Lately it’s been either salami, Eggo waffle with a little “smidge” (as Nicholas says) of syrup and a smear of margarine, or his baked chicken leg. It seems like it’s getting kind of boring for him. Oh, and he’s loving being able to have milk again, well not actually milk, but the Lactaid kind.
June 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Friday, June 10, 2005 11:45 PM CDT
Day plus63
CYCLOSPORINE IN RANGE
Yes, yes, yes the Cyclosporine level is at 296 and in range (240-310). This is only the fourth day it has been in range over the past three weeks. We have not had two consecutive days with it being in range, and we need consecutive days now! PLEASE PRAY with us. Sustaining the level manages the GvHD and would enable us to comfortably taper down the steroid dose soon, toward getting off of it. His gut appears to be continually healing and this is a real good thing and positive indicator regarding the overall issue of GvHD.
AMAZING
Now that the Cyclosporine is in range, it is amazing how quickly the rash over his body is improving. And it was wonderful to see Nicholas display more energy today. Combining energy and a desire for more of what he wants to eat, Nicholas raced mom down the hall at the RMH for two extra slices of salami.
CYCLOSPORINE ISSUE
Monday, Nicholas will have more labs drawn for the Cyclosporine level and chemical levels like those linked to the liver. We NEED the levels to be in range otherwise an additional medicine will be added (linking back to a journal sometime this past week). The additional medicine will suppress his immune system further, and subject him to greater risks for infection. PLEASE PRAY with us, we do not want this.
CHIMERISM AT 98 PERCENT
GREAT news, the Chimerism test results from the marrow drawn June 6 reveals that 98 percent are donor cells (up from 95 percent on May 11 the first time this was done since the BMT). Remember the goal over time is 100 percent of the donor cells. Please refer to the April 27th journal for more information.
June 10, 2005 Blood Counts:
WBC: 2.1
HGB: 11.3
PLTs: 170
ANC: 1,300
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Thursday, June 9, 2005 11:59 PM CDT
Day plus62
A GOOD DAY AND EVENING
Nicholas had a relative good day today (Thursday). He was less tired and his glowing personality was more consistently present throughout the day. Remember, he has maintained his amazing high spirit and concern for others' happiness—really—than complain about anything going on within his body or mind. He is truly amazing, and I thank God for Nicholas' outlook and thank you for your continued love & prayers.
Nicholas “coached” the doctors into letting him have one slice of salami tonight. During the clinic appointment this morning he said to the doctor something like: Can I have one slice of salami today, and only one so I can see if my stomach handles it okay—what do you think?
The doctor said yes and really appreciated his negotiation style. Oh, Nicholas LOVED the taste as he reflected on the taste as he remembered it. He simply said, “Ummmmmmmm.”
Mom is really, really tired. However, she is doing an amazing job with mixing the medicines, administering medicines orally and via IV, getting up throughout the day and night to administer the medicines and manage the pump, playing, teaching, etc. AND the easy part, LOVING Nicholas! Making time to take care of ourselves is still mom & dad's challenge.
EXPECT MEDICAL UPDATES TOMORROW (FRIDAY)
Tomorrow (Friday) we will get some specifics on all that is going on: Cyclosporine level, chemical levels regarding the kidneys and liver, GvHD, etc. We do not expect results from the Cytogenetics or Chimerism lab work tomorrow.
June 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Wednesday, June 8, 2005 11:56 PM CDT
Day plus61
CYCLOSPORINE AND IMPACT TO THE SKIN AND GUT GvHD
The Cyclosporine level came down a little more, to 220, and is still low and out of range. This is having a negative effect on the skin GvHD—it is not visibly improving. And it appears that the gut GvHD that has been healing pretty well may be negatively impacted based on his stool output tonight.
First intervention for tonight was to increase the IV Cyclosporine to 90mg.
OTHER LEVELS
The doctors and mom & dad are happy that the Bilirubin and levels linked to the liver are in range.
WE PRAY
Regarding the Cyclosporine, Bilirubin, skin GvHD, gut GvHD, and liver GvHD we pray for complete healing now. We pray that this leukemia and bone marrow transplant process become only a “past” check point on Nicholas’ journey. That it serves as a point of reference to witness for our Father God. We know that God is a loving God and that His omnipotence, omniscience, and omnipresence are around Nicholas. The glory of all the wonderful blessings—and the progress as well as healing—witnessed belongs to God. We claim this and ask for “more” with the understanding that it is “not my will be done, but thy will be done.” In fact, we pray for all the kids, everyone impacted by leukemia to right now feel God’s love around them. That His love provides comfort, peace, and direction for healing.
Have we prayed enough? Have we asked for your continued prayers too much (understanding that we have heard from so many of you that Nicholas is constantly in your prayers)? We hope, we trust that you too feel that there is not ever a time to stop praying. Please, please let it be known to God the love and glory to God that Nicholas’ healing brings.
WE ARE FRUSTRATED AND THANKFUL
We are so frustrated with all that is going on. Our exhaustion gives way to our love and passion for our little sunshine—Nicholas. We are thankful for Nicholas’ wonderful way of being, your support, and your actions for Nicholas and so many other kids and families linked to all of this leukemia “stuff.”
We, we, we. Please do not get frustrated with the we, we, we. Mom & dad are sensitive to asking things of you as well as our talking about “we.” I trust you understand and are right with us in our continued fight. Mom & dad need you and we are thankful that you are with us.
WHAT NOW
Back in the clinic tomorrow for more lab work, analysis, and consultation. This has become a daily part of the process and that is okay. The push goes on for a perfect outcome, not just an outcome.
June 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Tuesday, June 7, 2005 11:21 PM CDT
Day plus60 (Day 200 since Nicholas’ leukemia diagnosis)
TIME PASSED, AND WHAT THIS JOURNEY MEANS TO US
Wow, 200 days has passed. It’s easy to recognize that we have been on our healing journey for so many, many days, because it is the constant way we now live. However, it is hard to live this journey day, after day, after day. We first understand Nicholas is the focus of our energy and he is the source of our strength through God. We cannot complain because it is Nicholas that is personally fighting to beat leukemia and it is our fight for understanding and to listen to God for direction.
And the lives of our other three boys are forever changed, as the time passed, is time passed. So we look for lessons through this fight. Without this fight (journey) there are aspects of life & learning that we would not have been able to understand, learn, and grow from. Many aspects of life do not hold the same meaning for us anymore: what we look forward to during weeknights, weekends, holidays, etc. And it is okay; perhaps we have one of the greatest gifts—a clearer focus on life, learning, and loving.
INITIAL COMMENTS ON YESTERDAY’S IMPORTANT PROCEDURES
Our doctors reported that the preliminary look at yesterday’s marrow draw shows no abnormal cells. They are very pleased with what they saw, again the sample looks very cellular (lots of cells)—a good thing. We are anxiously waiting for the cytogenetics and chimerism analysis and results.
TODAY
Nicholas had a very quiet day that concluded with popcorn and a movie. He and a patient named Kaeli also at the RMH spent the entire evening in the family room of the immune wing with their moms. Although there are no visible signs of improvement on his skin, Nicholas had no complaints today—thank you God! If you noticed that his skin is darker around his eyes, the doctors report that this is a temporary result of the chemotherapy.
TOMORROW
Tomorrow morning’s clinic appointment includes a blood draw that will result in Nicholas’ current Cyclosporine level, liver enzyme’s levels, and other chemical levels that will tell the internal picture of what’s going on. Through God, healing can be in His speed and we know that there is nothing that could be going on that He cannot control. PLEASE PRAY WITH US.
June 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Monday, June 6, 2005 7:57 PM CDT
Day plus59
THIS MORNING’S PROCEDURES WENT WELL
It was a very long morning and early afternoon at the hospital and clinic but all went well. We do not ever want to treat these procedures as routine, however, we are certainly happy that they are routine in terms of how well they have gone and how well Nicholas has gone through them.
When mom & dad arrived into the recovery room just moments after Nicholas did, he was already awake. Generally, he sleeps for about one hour while coming out of the operating room and once he is into the recovery room. I guess, he gets his energy from, well, God—it is not based on what you would generally witness. Just like the past week, although he has been tired he can quickly shift into high energy.
WHAT THE DOCTORS SAID
The marrow was clear and the smear looked very cellular—a good sample. Results on the various outcomes and tests (discussed in yesterday’s journal) will come in over the next day through a couple of weeks.
CYCLOSPORINE
Today’s Cyclosporine level is 232, still low and out of range. Beginning with tonight’s 9:00pm dose, we are increasing it from 75 to 85mg via IV.
GvHD AND HIS SKIN
The skin GvHD is still flaring up. Our doctor said Nicholas’ GvHD has been tough to control, and it is not indicative of the marrow he received from the donor, as you would normally see this with a mismatch and not from an 8 for 8 match. As stated in earlier journals, he is metabolizing the Cyclosporine so fast which is a factor toward trying to manage the GvHD. And as a result he is on the steroid longer than all of us would like.
We are now talking about adding another medicine and we would not like to do so because it would further suppress Nicholas’ immune system and subject him to increased risks of infection. Without any improvement by this Thursday, we will be making some intervention decisions. PLEASE PRAY WITH US!
OTHER NUMBERS WE ARE WATCHING
Kidneys: The kidneys are looking great and all the numbers are normal (in range.)
Liver: The liver enzymes are coming down—GOOD. AST is normal and the ALT is high (but coming down).
RESTING WAS THE MOOD OF THE DAY
Understandably, Nicholas was tired and he spent just about every moment of the day resting or sleeping. Thinking about the fever last week, and although the cultures have been coming back negative (good), it’s possible he contracted some type of respiratory virus that could be causing him to be so tired this last week.
Nicholas has been working so, so hard since the leukemia diagnosis and through all of the BMT regimens. And he still does not complain—what an angel. And he certainly brightens up our days and nights—and we need that although it should be mom & dad brightening up his days and nights. We are so fortunate!
June 6, 2005 Blood Counts:
WBC: 3.4
HGB: 11.5
PLTs: 208
ANC: 2,200
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Sunday, June 5, 2005 11:12 PM CDT
Day plus58
VERY IMPORTANT PROCEDURES/TESTS TOMORROW (Monday)
1) Tomorrow, Nicholas will go to the operating room for a 3rd of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. These five make up the last of the chemotherapy Nicholas should forever receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen are destroyed. The five are being done every two weeks.
2) Also, the 2nd of three bone marrow aspirations and biopsies will be performed. The results should be known in 2-3 weeks, and these three are being done once a month to confirm that he is still in remission. Marrow will be used for cytogenetics test-DNA indexing, to confirm that there are still no hypodiploid cells (reason for the BMT). Results last month were negative—GREAT.
3) And marrow will be drawn for the DNA chimerism test discussed in the April 27th journal. The results should be known in 1-2 weeks, and it monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells. The first one on May 11 revealed that 95 percent were donor cells—great start—and we are praying that tomorrow's is at least 95 percent or higher. We need to have it going up, not down.
Please PRAY with us!
FUN DAY
Nicholas enjoyed playing on bars, “light” climbing on chains, and playing with water guns with his life-long friend Joey. With the water guns, it was the two boys against their dads. Somehow, our size didn’t matter as they used clever maneuvers to keep us off guard and to win by wetting us more than we did them. And then they relaxed playing a Shrek 2 play station game.
Dad was very happy to see Nicholas laughing, running, and enjoying himself—doing things that he always has done. Especially because he has been very tired lately. We are so thankful for these moments and friends that help us along the way.
Mom was out—just across the street at the shopping center—with two of our other three sons and a couple of friends. Dad was happy to see mom try to do something normal; yes, shopping is quite normal for mom and the boys.
Mom & dad need these fun moments because the rest of the time it is so very, very hard going through this journey.
PLEASE REMEMBER, TOMORROW IS ANOTHER BIG DAY OF PROCEDURES/TESTS
June 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Saturday, June 4, 2005 11:01 PM CDT
Day plus57
CYCLOSPORINE IS BACK DOWN, OUT OF RANGE
We were so glad to see his Cyclosporine level get into range yesterday, and so sad/frustrated that today it fell to 228, out of range again! This past Wednesday we started the IV Cyclosporine at 75mg and we were discharged yesterday with administering it at 70mg because previously with “IV” Cyclosporine it continued to go up when we got it in range. Tonight’s instructions are to administer 75mg. What do we do about this “roller coaster?” Well we will start at the beginning in terms of PRAYER. We will seek God first, and we ask for your prayers once again. Mom & dad know that we have asked this of you over and over and over—we need you and know that your prayers make a difference. Thank you so much for giving of yourselves through prayer!
WEB CAM INTERACTION WITH MONTESSORI CLASS LUAU
Nicholas had a really good time this morning interacting—via web camera we set up—with his teacher, classmates, and parents during his class’s annual Luau. We are so grateful for wonderful friends through his Montessori school. The parents have been incredibly proactive at finding ways to keep Nicholas and the other kids connected. It is definitely a labor of love, because some of the things that we have done have not been easy (like coordinating logistics for the web camera hook up and last minute changes when things were not working quite right). The parents and teachers make great things happen—THANK YOU!
MOMENTS OF RELAXATION ARE HARD TO FIND
24/7 mom and dad are focused on Nicholas’ healing and cure. Finding moments to relax are very hard to find so it is especially nice when friends help provide peaceful moments, even if they are just “moments.” Thanks Soha, and Neda and Hana, for helping mom and Nicholas. These moments help dad too: seeing mom just take in moments of sunshine and a warm breeze and Nicholas playing with others, seemingly, without a worry in the world. Loving friends from home, work, and Nicholas’ school—we are fortunate.
NICHOLAS HAS BEEN TIRED THE LAST COUPLE OF DAYS
While Nicholas has been tired more than normal, his spirit is still full of engaging energy and he is so quick at being clever. We are so fortunate to have Nicholas blessed with a warm heart that continuously touches others in a beautiful, caring way. Here too, it seems like a circle-of-love as he gives it, he receives it. We are THANKFUL FOR OUR LOVING GOD.
We do not know what tomorrow brings, but through God we will find joy, happiness, and love.
Tonight will be just fine, and tomorrow will be great!
CLICK ON VIEW PHOTOS FOR A SNAP-SHOT OF TODAY VIA PICTURES:
1) Morning, mid-day, and evening his spirits are high despite being tired in between. It's amazing how he finds energy when needed.
2) Have you noticed that his eye brows are thicker and darker. In fact, his hair is starting to grow back and it is darker. Another part of the BMT process is that his hair most likely will change color, this is what we are seeing. And the thicker eye brows (they may become almost like a uni-brow) are a result of the Cyclosporine. Once he is off the Cyclosporine he will loose the hair that is growing places where he didn't have hair before the BMT.
3) Even with the full body skin GvHD, he does not complain about the uncomfortable feeling it generates. Thank you, God!
June 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
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Friday, June 3, 2005 11:59 PM CDT
Day plus56
OUT OF THE HOSPITAL
Late afternoon Nicholas was discharged from the hospital. The fever that surfaced Wednesday broke quickly and he remained without fever. The cultures were negative. The decision for discharge included that mom & dad—well mom—would have to administer IV Cyclosporine. (Dad will play a supportive role—including to get up at 3:00am each day to take an item out of the refrigerator because it needs to be out 6 hours before the 9:00am administration via IV.) The Cyclosporine levels, skin GvHD, and liver GvHD are major focus areas. But we are THANKFUL that his gut continues to be healing well!
Tomorrow morning we have an 8:30 appointment in the clinic to check his Cyclosporine level.
ADDITIONAL, HEAVY RESPONSIBILITIES FOR MOM
Along with the already heavy load of administering medicine to Nicholas orally and IV, adding the Cyclosporine via IV generates a lot of work and “concentrated” effort for us. And of course we will do anything and everything for our little sunshine!
The Cyclosporine is in range at 266; what a difference IV Cyclosporine makes. The issue here will be to keep it in range and administering via IV instead of orally is doing the job.
SKIN GVHD
Prior to the fever on Wednesday, his skin was looking good compared to the inflamed rash over his entire body during the height of the skin GvHD. With the Cyclosporine being low and out of range for the previous nine straight days, an invitation-like situation was apparently created and the skin GvHD is now back. After the first four IV doses Wednesday night through Friday morning, the skin was looking better this afternoon, but tonight it is looking “harassed.” Will talk with the doctors tomorrow morning in the clinic.
LIVER GVHD
Monitoring and ready to be proactive is the status (as indicated in yesterday’s journal).
THIS WEEKEND
Tomorrow Nicholas’ pre-school class is having a Luau and we have planned to use web-cameras so Nicholas and the class can interact simultaneously. Visits by family and friends again are planned to fill the weekend, and fun with water is in the plans.
Nicholas has been a little tired the last couple of days although his spirits continue to be high. We’re sure the visits this weekend will provide some great interaction and jumpstart his energy level.
June 3, 2005 Blood Counts:
WBC: 3.8
HGB: 10.2
PLTs: 188
ANC: 2,926
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Thursday, June 2, 2005 5:16 PM CDT
Day plus55 (Day 195 since Nicholas’s leukemia diagnosis)
STATUS FROM YESTERDAY’S RE-ADMISSION INTO THE HOSPITAL
FEVER: Nicholas' fever broke yesterday evening and he has remained a-febrile (without fever) and the cultures drawn yesterday are negative so far (a good thing). We are very, very proud of Nicholas’ amazing strength.
BACK TO THE RMH VERY SOON: With Nicholas' strength and healing we are planning to be discharged tomorrow afternoon as there is at least a 48 hour time period from the time the fever breaks for inpatient care. And we hope to get by the Cyclosporine and liver issues.
CYCLOSPORINE:
1) This morning's Cyclosporine level was 202—still below the target range of 240-310.
UPDATE 11:45pm-This evening's level is now 237.
2) If we are discharged tomorrow, we will have to administer IV Cyclosporine—this is a discussion point for the doctors to have this administered out of the hospital and we will do whatever it takes… “period.” Whether we are in the hospital or not we will do everything for Nicholas, with God's guidance.
GvHD FLARE UP
With the, now, 9th straight day of a low Cyclosporine level, the skin GvHD that Nicholas previously went through is creeping back. His skin is inflamed, and now that we are administering IV Cyclosporine and its effect of increasing the level, toward stabilizing it should prompt control of the skin GvHD. AND we will push and fight this disease because we will not settle for just getting by or holding it back—we will win this and the overall leukemia fight!
NOT GOOD—NOW LIVER GvHD
1) The doctors do not have a “huge” concern right now, and feel that the IV Cyclosporine will lessen their concern once we get the Cyclosporine level right—therapeutic.
2) Again, we have to taper down and get off the steroid (now Prednisone), and we cannot taper down until we get the Cyclosporine level right.
3) Another option from Cyclosporine to manage the liver function is Tacrolimus and we may have to switch to it. However, it is not as effective toward managing/controlling skin GvHD or gut GvHD.
4) But, if the liver enzymes continue to be high, we will have to strongly consider administering Tacrolimus. Monitoring goes on!
IT DOESN’T HAVE TO BE THIS WAY
Thankfully, Nicholas has done remarkably well on many segments of this journey. In fact, amazingly well. So the process, roller coaster effect, and steps toward healing do not have to be “down” times. PLEASE CONTINUALLY PRAY with us, confessing that the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness, in his nature, in his immortal spirit, and even the joints and marrow of his bones. That His Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in him.
Please click on "View Photos."
Thank you so much!
June 2, 2005 Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
June 1, 2005 Counts:
WBC: 5.0
HGB: 10.9
PLTS: 205
ANC: 4,300
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Wednesday, June 1, 2005 9:17 PM CDT
Day plus54
NICHOLAS IS BACK IN THE HOSPITAL
Today Nicholas was at the LPCH-Stanford clinic for planned follow up and administration of IVIG. Vital checks are done before, during, and after this treatment, and after the treatment the final temperature check revealed that he had a fever of 101. Nicholas was admitted into the hospital this afternoon.
While being admitted, today's Cyclosporine results came in and his level of 142 is further out of range (for the 8th straight day). There is some sense that the GvHD could flare up so tonight at 7:00 he has gone back onto IV Cyclosporine, 75mg two times a day. Right now the doctors feel it is a metabolism issue verses an absorption issue.
NOW WHAT
Antibiotics Vancomycin and Ceftazidime are being administered, cultures were drawn to identify any infections, and a urine analysis is being performed.
PLEASE JOIN US IN PRAYERS for Nicholas' continued shielding from bad things happening, and prayers for his healing. Amazingly his spirits are still high—what a blessing and we thank our Loving God for enabling Nicholas to shine brightly. We know that it is "not my will, but thy will be done" and we know that Nicholas' amazing "way of being" during this journey is shining an unforgettable light on God's omnipotence, omniscience, and omnipresence. WE ARE FIGHTING AND PRAYING: Let it shine, let it shine, let it shine.
