Tuesday, May 31, 2005 11:42 PM CDT
Day plus53
CYTOGENETICS—VERY GOOD NEWS
The analysis is complete and the results are negative for signs of hypodiploid cells. Remember, this is the DNA index analysis that in mid-December 2004 (a little more than a month after the November 19 leukemia diagnosis) revealed the hypodiploid situation and was the reason a BMT was the best option for curing Nicholas. He continues to be in remission since November 29. We are so thankful for the good news and praise our Loving God.
CYCLOSPORINE WOES—WE NEED YOU AND YOUR PRAYERS
Today’s Cyclosporine level is 158, the 7th consecutive day that it has been out of range (240-310).
LIVER ENZYMES—WE NEED YOU AND YOUR PRAYERS
The liver enzymes have been astronomically high (for example one factor with the range being less than 60, his level was 741 yesterday. And today, although it came down some, is still way too high at 562. The doctors are watching this extremely closely and we are hoping it continues to come down.
If not, testing will be performed toward identifying what’s causing it to be out of range. And the doctors talked about other next steps, including a liver biopsy. We PRAY that Nicholas is continually “shielded” and that a biopsy is not necessary because it is invasive and poses its own risks. We also PRAY that it is just a delayed reaction from when the Cyclosporine level was too high around May 25. A Cyclosporine level that is too high can harm the liver and affect the levels.
OTHER THANKFUL “FORS”:
…the skin GvHD. It is looking better and better.
…his gut GvHD that appears to be healing well (remember this will take several months). His appetite is great and his stomach is not having any trouble being re-introduced to a variety of foods. His consumption/diet started out with just liquids and gradually included the following: broth, Jell-O, toast, Popsicles, tuna, baked chicken, pretzels, bananas, bagels, animal cookies, steamed white rice, waffles, and a variety of drinks with most of them diluted with water along the way. And today he was able to add a See’s vanilla lollipop to his list.
THE NEGOTIATOR
When Nicholas reaches his limit for the day of one food item and he is still craving it, he negotiates by giving up another daily food item for what he is craving. We have talked about him being such a caring little boy—and he is, however, right now he doesn’t care much for mom or dad eating things that he can’t have. He says, “Stop eating, I told you that you can’t eat anymore. Throw it away.” And “Oh, you can’t have that because I like that.”
OUR LOVING LITTLE BOY
We love our little boy so very, very much (as all parents love their children). And this journey is so very, very hard. And, we will WORK and FIGHT so very, very long and hard!
We understand that it is a process toward healing and we sure do get frustrated at times. But we will close the night with a softer moment by sharing the following.
Nicholas says the cutest things that keeps us entertained all day—it is never a dull moment. This is great because the steroid, Prednisone, can cause mood swings and that has not been are experience with Nicholas. Well, except when we are eating something that he wants.
May 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, May 30, 2005 11:27 PM CDT
Day plus52
PUMP ALARM SOUNDING, NO NURSE, SO MOM-NURSE WAS UP LATE, EARLY
Remember the late night, very early morning beeping of the pumps while in the hospital? Remember the sleep interruptions when the nurse would come into the hospital room to care for Nicholas and the pumps (not that the nurses were noisy but our attention was always focused on what was going on around Nicholas)? Guess what happen a couple hours (1:00am) after dad gave Nicholas his Cyclosporine? Well, at the RMH the nurse is mom and last night, early morning around 3:00 the alarm from Nicholas’ pump (hydration was being administered) was sounding. It was sounding repeatedly after mom was managing the cause repeatedly. Finally, mom had to call the LPCH for pump intervention. Mom had to re-program the pump and was then able to go back to sleep.
AND WE HAD AN EARLY MORNING SCHEDULED
What a beautiful, bright, warm, morning. Mom was very tired, and dad woke her saying, “Rise and shine, for this is the day the Lord has made. Be glad, rejoice, give thanks.” Then mom got up, then Nicholas. Off we went for Nicholas’ blood to be drawn to check his Cyclosporine level.
We then drove a couple of miles down Sand Hill Road looking at a park for a possible graduation get together in a few weeks. First we crossed Highway 280 for a brief scenic drive, watching horses at a horse park galloping, jumping, and full speed pacing (or running, not sure what it’s called). Coming back we went by a small, neighborhood park suggested by one of his doctors. Away from the park, up a very small hill were several cows under a big, shady tree. Nicholas watched one of the cows pulling, really, at a low hanging tree branch and two calves going head to head in a playful way.
THE REST OF OUR DAY AND EVENING
With two friends, we went on a very, very short scenic drive and made our way to a park. There, four simple things made for an exhilarating time—grass, hose, water bottles, and water. It was GREAT, four adults and Nicholas actually revealed five big kids having fun squirting each other with a water hose and splashing water onto each other from a water bottle. Running, trenching, splashing, laughing, and some good memories of fun under the sun.
The evening started with another tasty, homemade dinner. Nicholas capped off this moment negotiating for a dessert-like item (to him I guess because he is on a limited diet). He orchestrated a trade of a white piece of bread for an eggo waffle. Shower, playing, and reading concluded our day.
May 30, 2005 Blood Counts:
WBC: 3.5
HGB: 11.2
PLTs: 192
ANC: ? (complete information not received for calculation)
___________________________
Sunday, May 29, 2005 11:33 PM CDT
Day plus51
We had a wonderful Sunday! Friends and family filled the day with a lot of joy and happiness.
CYCLOSPORINE
Like you probably are, we are tired of this heading (Cyclosporine) but like a challenge in life, this is life and we will keep approaching, pushing, and fighting to either get through it or go around it. TOMORROW morning we have an appointment to check his Cyclosporine level—the results will not be known until mid-afternoon.
FIRST 100 DAYS POST-TRANSPLANT (In A Question, Answer Format)
WHY IS NICHOLAS STAYING AT THE RMH VERSUS HOME SINCE HE WAS DISCHARGED?
Because complications may develop suddenly during the first weeks following hospital discharge, it is important to be able to return to the hospital quickly. Key factors are because we live farther than a 30-minute drive from the hospital (under any traffic situation) and because the drive involves crossing a bridge. It is not uncommon to be readmitted to the hospital after transplant for treatment of fevers and/or varicella zoster (same virus as chicken pox).
LAST WEEK HE WENT TO THE HOSPITAL DAILY, HOW OFTEN WILL HE GO TO THE HOSPITAL/CLINIC?
Last week after discharge, Nicholas was scheduled to return to the clinic the following day and at least twice a week for blood counts, IVIG (immune globulin, that he will receive about every 30 days for 9 months), and vital signs. A physical exam is to be done at least once a week by his doctor and he will be assessed for adequate nutritional and fluid intake. (We went daily because of the Cyclosporine issue.)
Also, Nicholas may be cared for in the Day Hospital if he requires a blood or platelet transfusion, IV hydration, and/or other medication administration.
(Mom & dad charts all intake daily, and uses a spread sheet to help manage the many medicines required to be administered round the clock. Including the TPN that is now complete and hydration.)
HOW LONG DOES IT TAKE FOR HIS IMMUNE SYSTEM TO RECOVER FROM THE BMT?
It takes time to fully recover from a BMT, and Nicholas’ energy level may be low for a period of weeks to months following the transplant. (Thanks to God, we have seen Nicholas sustain his energy.) It takes a minimum of 6-12 months for a patient’s immune system to return to its normal function, and there will be some restrictions on activities during this time.
WHAT ARE THE RESTRICTIONS AND ISOLATION?
Nicholas is NOT allowed to return to school, go into public buildings, attend crowded events (concerts, church, movies, parties, shopping centers, restaurants, etc.), or swim until his immune system shows signs of recovery. The only buildings that he is permitted to go into are the RMH (immune wing only) and the hospital.
He is required to wear a mask when he enters the hospital or clinic to provide protection from potential infections. Nicholas does not need to wear a mask if outdoors and away from crowds.
Other areas and activities that need to be avoided until isolation is lifted include areas of construction, remodeling sites, and sandboxes. Nicholas can not swim in lakes, pools, the ocean, or be in hot tubs until his Broviac (central line, catheter) is removed. He also has to avoid household plants and gardens to minimize exposure to molds and fungus at this time.
Nicholas needs to wear sunscreen at all times when outdoors and even on cloudy days. Both chemotherapy and radiation therapy cause increased sensitivity, so he is susceptible to sun burns.
He can not get any new pets until he is out of isolation. Nicholas needs to avoid being licked by pets and should not come in to contact with animal waste (like a cat’s litter box) or pet’s food dish.
WHEN WILL HIS BROVIAC BE REMOVED?
About 9-12 months from the BMT date.
SO WHAT HAPPENS AFTER DAY PLUS100?
If Nicholas’ condition is stable at Day plus100, he will be able to return home. Children’s Hospital-Oakland will then resume the care of Nicholas as they did prior to the BMT. He will have to return to LPCH-Stanford 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, develop, he may be required to be seen more frequently at LPCH-Stanford by the BMT service.
After Day plus100, some of the restrictions and isolation will be able to be relaxed. (We will talk about that at that point.)
WHAT ARE THE LONG-TERM COMPLICATIONS?
Chronic GvHD can develop 3-12 months after transplant and may affect up to 25percent of pediatric patients. Chronic GvHD may cause infections, skin abnormalities, dry eyes and mouth, and/or dysfunction of the liver, lungs, or gastrointestinal tract. Because treatment of GvHD involves suppressing the immune system, patients may remain in strict isolation for a longer period than 100 days post-transplant.
AND NOW A QUESTION AND ANSWER FROM MOM & DAD. WHY ARE WE THANKFUL?
We are thankful that God is shielding Nicholas and operating within the minds and hands of the nurses and doctors. He is directing Nicholas’ journey and His direction is the “right” direction. And we are thankful that he is providing us with the ability to make the right decisions. We are thankful for His love that enables us to care for Nicholas with strength, energy, and clearer minds to “see” love along the journey.
Have a wonderful Monday—and thank you, again!
May 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, May 28, 2005 11:23 PM CDT
Day plus50 (Day 190 since Nicholas’ leukemia diagnosis)
HALF WAY TO DAY Plus100
Nicholas is doing GREAT and he is half way to Day plus100 (100 days after the BMT). The significance of Day plus100 is that if he is stable at that time he will be able to return home. More on the Day plus100 tomorrow.
GOOD DAY—THANKFUL
Mom & dad are thankful about everything because with everything that is going on in our lives, we are able to be closer to the things that really matter. Following is what Nicholas said responding to being thankful. “I’m just happy! I’m happy about everything—that I’m out of the hospital for a while. Oh write that down, that was kind of cute.”
CYCLOSPORINE—THIS DOES NOT GET US DOWN (FRUSTRATED, YES)
The Cyclosporine level is now 149 and still low. In the last 9 days it was in range (240-310) just twice: 198, 294, 312, 294, not sure, 480, 134, 134, and 149. Nicholas has gone from 90mg three times per day to 75mg and this evening back to 90mg.
Thinking back about being thankful, as always we are so thankful that God is watching over Nicholas and shielding him. Thankful that He is touching mom & dad in a way that enables us to trust in Him as God—this helps us to be free from fear, although frustrated, and energized to be what we need to be for God and Nicholas. And thankful that our three older sons have been understanding about our time and energy.
I know we are updating you here on the Cyclosporine, however being thankful has a place everywhere. So a few more things, okay?
OK, BACK TO THANKFUL FOR A MOMENT AND GUESTBOOK ENTRIES
We are so thankful to you for the guestbook entries that have made us laugh, that have shared stories, and helped us to either feel supported or that was supportive, etc. Thank you!
And thanks to Andy’s mom in Massachusetts; we appreciated your CaringBridge visit and words from experience. We, too, now pray for Andy’s healing and recovery. Not sure exactly why, but the following words from a song came into my mind: “…this little light of mine, I’m going to let it shine…” Andy and Nicholas are like little lights, through God they have everything to shine brighter and brighter, longer and longer, & better and better.
LAST NIGHT, LAST TPN
Last night (Friday) and running through this morning was the last administration of the TPN. Nicholas is now on hydration along with other medicines, including a multi vitamin and Folic Acid. Do you think he is ready to eat? Yes he is, however, he is not free to eat just anything. His diet is still closely directed and monitored.
FRIENDS
Nicholas was happy that friends visited today. It also meant another person to play with Nicholas and for mom & dad to stay connected in a seemingly normal way. The friends and fun didn’t stop there this evening. Nicholas had a very nice telephone call from a classmate from this year's class, and guestbook entry from a previous classmate that was a very nice surprise. Oh, the answer is no; Nicholas is not allowed to eat food from restaurants right now so no McDonalds at the RMH.
Early evening Nicholas spent time in the RMH family room playing board games. He played with the brother of another BMT patient at the RMH. The brother was his sister's donor.
SLEEPING A LITTLE LONGER TOMORROW MORNING
For the first time since Tuesday, mom & Nicholas do not have to get up early and go to the clinic for follow ups and lab work. His Cyclosporine level will be checked Monday.
May 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, May 27, 2005 11:21 PM CDT
Day plus49
NOTES:
1) At the end of this journal is a recap of May 26.
2) Please click on View Photos to see new photos at the RMH.
3) Updated photo albums, under Links, should be ready by the end of next week. All the photos that have been on View Photos during his pre-BMT regimen up to current photos will be included along with other photos giving insight to behind the scenes.
CYCLOSPORINE
The Cyclosporine level is coming back up. It’s at 168 and the target right now is 250. So guess what, tomorrow morning—Saturday—we are going back to LPCH-Stanford for a lab draw to check his level. We say “Saturday” but it really does not matter because we are putting time in God’s hands as well as Nicholas in God’s hand and know that there is no better time or place than to be with Him.
CYTOGENETICS
The Cytogenetics are still being analyzed and we expect the results soon. Remember, this is the DNA index analysis that in mid-December 2004 (a little more than a month after the November 19 leukemia diagnosis) revealed the hypodiploid situation. Which was the reason a BMT was the best option for curing Nicholas although he had responded to chemotherapy extremely well, was and has been in remission since November 29, and was sailing through the crazy ordeal that became our journey.
NICHOLAS
He Is Loving People
Nicholas is doing GREAT. He has developed some wonderful skills talking with you, nurses, doctors, etc. and we are absolutely thankful that God has shown us so much joy in the times of pain. Nicholas is continually developing and maturing beautifully. THANK “YOU” for helping him, and mom & dad, as his interactions with you via the guestbook gives us many perspectives on this journey—providing continuous moments of love, laughter, and language opportunities as he ponders your expressions and inquires about words or things for clarity.
Late Nights, Early Mornings
Have you noticed, although he is out of the hospital and into the RMH, he has been back at the hospital every morning for follow up and checking the Cyclosporine level. Coupled with administering medicines shortly after midnight, mom isn’t getting too much “straight” sleep. With dad back at work, mom is handling just about all of the after-midnight stuff—but it’s Friday night so dad will handle it tonight.
This Weekend
Nicholas is excited about this weekend because dad & mom will be together with him 24/7 for three days. This has been a transition period for Nicholas—and mom as well as dad—as dad has been with him essentially 24/7 since the diagnosis on November 19, 2004. And, dad will be there whenever it feels right! Friends and family make up all three days of this long weekend. There is a wonderful blend of long-time friends of mom & dad; friends from work; friends of brothers—well, Nicholas' friends now; and family will help fill Nicholas’ life with continued joy.
HERE IS THE RECAP FOR MAY 26, 2005
May 26, 2005
Day plus48
THREE MOMENTS IN THE DAY AND CYCLOSPORINE
8:00am
“Momma, it’s chow time.” (Remembering that last night mom said he could have some more chicken when he wakes up.)
9:00am
Although out of the hospital, Nicholas and mom had to get up and go to LPCH-Stanford for lab work: blood counts and the Cyclosporine level. Dad was up and at work—what tremendous support we are receiving from every view of this journey.
From colleagues dad has known for 25 years to those met just once have expressed heartfelt love and prayers for our Nicholas. The nurses, doctors, and staff members in physical therapy, child life, family resource center, and on-and-on have more than done their job—they have demonstrated amazing passion for Nicholas AND Nicholas has developed amazing “love” for them. Our friends (great neighbors and Montessori school connections that developed into great friendships) and family, thank you for your continued checking up on us and finding ways to do things we have asked or lovingly given of yourselves to help ease “everything” associated with this “leukemia and bone marrow stuff.”
9:00pm
Remember, Nicholas is taking Prednisone (steroid being tapered down) that can make him hungry. During dinner, Nicholas noticed that dad had more rice than him. Nicholas said, “Daddy, why did you get a lot of rice and I got a smidge.”
CYCLOSPORINE
Not only are we on a roller coaster, we are on a merry-go-round as well. Now the Cyclosporine level is low at 134. Well, a good thing is that the dramatic shift from 480 indicates the kidneys are working well.
May 26, 2005 Blood Counts:
WBC: 4.4
HGB: 11.8
PLTs: 224
ANC: 3,476
___________________________
Wednesday, May 25, 2005 11:01 PM CDT
Day plus47
TUESDAY NIGHT AT THE RMH (FIRST NIGHT)
Naturally, Nicholas was so happy to be getting out of the hospital. The first thing he said when walking out of the hospital was "I can't wait to smell the Expedition" (referring to one of our vehicles). At the RMH he told a staff member, "I LIKE it here at the Ronald McDonald House." We walked around a portion of the RMH yard and came upon a statue of Ronald McDonald sitting on a bench. (Please click on View Photos tomorrow night to see a picture of Nicholas and Ronald.)
Although mom & dad did a lot of work with the medical staff in caring for Nicholas in the hospital, mom is now doing all the administration of medicines and the TPN. 24-hours a day she is managing the schedule of medicines, dosages, pump, etc. Training provided understanding and learning about administration of medicines as well as what to look for in terms of signs of potential issues, before, during, and after administering the medicines. Of course we will do anything to care for Nicholas. But it is a scary and nervous feeling handling Cytotoxic agents.
Moving into the RMH is like moving into a house "period"--there was so much work to get our stuff in to the suite and organized with limited space. While confident, mom felt "overwhelmed and discombobulated," and was very, very tired.
AND it was nice for Nicholas, and mom & dad to be in regular beds.
TODAY
It was a hectic day. Mom and Nicholas were at the LPCH-Stanford Hospital at 9:00am for planned first day follow up, administering medicines, and an array of activities with Nicholas at the RMH.
For the first time in a long time, Nicholas had mom's baked chicken for dinner. He said, "Umm that was tasty." (Please click on View Photos tomorrow night to see this picture.)
CYCLOSPORINE
Can you believe it, the Cyclosporine level is too high--at 480--so we were told to skip the 1:00am dose and will have labs drawm tomorrow morning at a clinic appointment. We were not happy at all that it is out of range, and so high, but mom is happy to try to get some uninterrupted sleep.
It is getting late and WE ARE EXHAUSTED mentally and physically. More to follow hopefully tomorrow, but for sure if there is critical information. So please assume no news is good news and know that we still need you and your prayers. By this weekend we will provide an understanding about the remainder of the days up to plus100.
May 25, 2005 Blood Counts:
WBC: 5.9
HGB: 11.8
PLTs: 249
ANC: 4,342
___________________________
Tuesday, May 24, 2005 5:03 PM CDT
Day plus46 (Day 186 since Nicholas’ leukemia diagnosis)
YES, YES, YES, NICHOLAS HAS LEFT THE HOSPITAL
It’s 3:03pm and after 55 days in the hospital for his bone marrow transplant, Nicholas has stamped—completed—this stage of his healing journey.
In case tonight we do not post a broad journal of the day, we wanted you to know the GREAT news above. And once again thank you for your CONTINUED PRAYERS as we begin the next stage of the journey. THANK YOU, THANK YOU, THANK YOU!
WHAT NICHOLAS SAID
1) As we were writing this journal, Nicholas said he likes letting people know how he is doing. And then he said, “Will you help me write letters and stuff to people.”
2) To his family, friends, nurses, doctors, everyone: “I miss you, I will see you soon, and I hope you guys miss me. From Nicholas.”
May 24, 2005 Blood Counts: No labs this morning. Now that we are leaving the hospital these labs and their counts will be done twice per week.
PHOTOS (View Photos): Tonight or tomorrow we will have three photos from his discharge at Stanford to his arrival at the Ronald McDonald House. And next week under Links we will have updated albums.
___________________________
Monday, May 23, 2005 11:00 PM CDT
Day plus45 (Day 185 since Nicholas’ leukemia diagnosis)
IMPORTANT PROCEDURE TOMORROW (TUESDAY)
Tomorrow, Nicholas will go to the operating room for the 2nd of five lumbar punctures and intrathecal (injection into the spine) Methotrexate chemotherapy. Remember, as part of the BMT process to ensure that any leukemia cells that may have survived are destroyed, these five make up the last of the chemotherapy Nicholas should forever receive. The next one will be done in two weeks.
Please PRAY with us!
OTHER MEDICAL INFORMATION
1) The liver function lab reports show that his chemical levels are back in range.
2) The Cyclosporine is back in range at 294.
3) The tapering down of the steroid begins tomorrow. We’re really happy to be able to start tapering down because it has negatively affected his blood pressure and glucose level.
AND WE’RE GOING TO THE RONALD MCDONALD HOUSE TOMORROW
Yes, Nicholas is still scheduled to leave Lucile Packard Children’s Hospital-Stanford tomorrow. From the time he was admitted for the BMT, it has been 54 days, 5 blood transfusions later, 1 delayed discharge by 21 days, a multitude of prayers from everywhere, and a loving God & immeasurable blessings.
We’re so thankful that God is operating around and within Nicholas, and His love fills us with joy—we are grateful for his guidance of the doctors and “shielding” of Nicholas throughout this journey and its slippery slopes.
GREAT DAY
Nicholas was anxious to get out of the room this morning. He and mom ate brunch outside, went for a walk in the hospital, sat by a water fountain—it felt like we (Nicholas and mom) were back in Hawaii, played with race cars, visited radiology lab technicians that Nicholas met during his conditioning regimen before the BMT, went to school in the hospital, read books on the patio, and spent time talking with the nurses.
YOU ARE IMPORTANT TO US
We are so ready for this next phase of our journey; and we know that your prayers and God is exactly what we need toward continued healing.
May 23, 2005 Blood Counts:
WBC: 6.8
HGB: 10.9
PLTs: 193
ANC: 5,392
___________________________
Sunday, May 22, 2005 11:07 PM CDT
Day plus44
CYCLOSPORINE WATCH
Today his Cyclosporine level was at 312, slightly above the desired 240-310 range for Nicholas. The doctors decided not to make any adjustments for now and will check it again tomorrow. Remember, it’s gone above and below the range rapidly so they want to better understand how fast Nicholas absorbs or metabolizes it.
LEFT INDEX FINGER STATUS
It is just about healed—yeah!
WHAT NICHOLAS IS EATING
With Nicholas’ stomach continually getting better, he is allowed to add more food items to his daily diet. And coupled with him taking Prednisone he really wants to eat. (Prednisone is a steroid, and it increases your appetite as well as makes you puffy—remember Nicholas’ cheeks in December when he was taking Prednisone?)
Today he had a banana, plain bagel, plain tuna on toasted bread, and Gatorade (well, water-ade because mom & dad have to dilute it with water—in the beginning he didn’t like us adding water and now he doesn’t seem to notice the difference).
SUPER SUNDAY
Nicholas, mom & dad had a very nice Sunday. We are thankful for God’s blessings and love. Cousins and friends visited and Nicholas spent the afternoon on the BMT-dayroom patio running, bouncing & tossing balls, and watching the NBA basketball playoffs.
With family, friends, and fun outdoors, it seemed like a nice average Sunday. And you know what? It was better than average because we are living it to the fullest in our minds and stretching the limitations for happiness regardless of where we are physically and medically.
GOING TO THE RMH
As Nicholas said, “Two more sleeps and we’re leaving the hospital.” Yes, we are still on target to be discharged on Tuesday following his procedure for more IT Methotrexate chemotherapy in the spine and a spinal tap to check the spinal fluid to ensure nothing has crept up.
May 22, 2005 Blood Counts:
WBC: 6.8
HGB: 10.7
PLTs: 194
ANC: 5,385
___________________________
Saturday, May 21, 2005 11:24 PM CDT
Day plus43
CYCLOSPORINE BACK IN RANGE!
Okay, the Cyclosporine level is back in range at 294. Evidently Nicholas metabolizes the Cyclosporine faster than the average and will require his dosage every 8 hours versus the standard once per 12 hours. We can handle that and Nicholas has handled his oral medicines throughout the day and night with relative ease.
GREAT DAY
Nicholas oldest brother, Chris, visited from college and we had lunch outside under the beautiful blue sky. (He graduates next month from UCSC—we are so proud of you Chris.) And our friend Soha with daughters Neda and Hana visited with us for a while. Family, friends, and fun; Nicholas was in his element laughing and playing. And what a pretty ending of our time out on the patio when we noticed several dozen white balloons drifting high up into the sky—it looked like a flock of doves.
Tonight while watching the movie Peter Pan, Nicholas said, “It would be nice if you could fly so you can see all the lights on outside, and looking at the stars would be very beautiful.”
Note: Tomorrow night we will post pictures from today’s visit.
May 21, 2005 Blood Counts:
WBC: 7.4
HGB: 11.6
PLTs: 173
ANC: 6,223
___________________________
Friday, May 20, 2005 11:15 PM CDT
Day plus42
The Cyclosporine level has dropped to 198, out of range, again! The frequency of administration was increased to three times per day instead of two, and if the level stays out of range, we will again be going back to IV Cyclosporine to get and keep the medicine into his system. Please PRAY that this is not the case…we would have hoped that he would be able to absorb the medicine by now, we shall see. We have another lab draw before his 1AM dose. That’s going to be a fun one. Anyhow, the results of that should be ready by around 2-3AM. We will not be able to sleep until we hear the results, we are anxious. Otherwise, he had a day full of being a “kid” in the hospital, not a patient in the hospital.
RACING, HIDING, AND NEW FRIENDS
While mom and Nicholas were racing on the BMT patio, and then hide-and-go seek with mom’s turn to hide, the grandfather of another BMT patient told mom, “I think you will be hiding for a while because your son is over there talking with my grandson.” Nicholas had gone up to a kid playing Pokemon with his dad on the patio and introduced himself and was standing there having conversation with their family. The boys enjoyed a Popsicle together and Nicholas enjoyed watching him play the game with his dad. When the boy had to leave they conspired to meet on the patio again and play some time this weekend. It was nice to see Nicholas being his sociable self, introducing himself and getting to know others.
FIREWORKS—BEAUTIFUL SIGHTS TONIGHT
Nicholas’ room is on the second floor with his “picture” window facing east. While mom was changing his Broviac dressing, he noticed lights from his left and looked out the window to see a beautiful firework display that colorfully lit up the sky. Nicholas comments were, “wow, whoa, beautiful…” During the display he said, “I wish I could hear the fireworks, I like the sound of them.” Along with seeing the display he really likes hearing the “boom” sound of the cannon shooting the fireworks high into the sky.
With the curtains still open, and the night sky dark now that the fireworks were over, dad saw a medical helicopter approaching the hospital. As it’s bright lights lit up it’s path dad asked Nicholas to watch the approach. Nicholas said, “Dad, I don’t have time for that.” He normally enjoys seeing these kinds of things but he was concentrating on his schoolwork that he was working on and putting that first—not bad!
As the night was winding down, Nicholas was able to eat one final animal cookie and while eating it he said, “This is the life.” Wow, small pleasures fill his heart—and satisfy his cravings! He has been a real trooper with his limited diet. The nurses and doctors are amazed at how cooperative he is with all the limitation despite the high doses of steroids that he is on (they make you hungry). We are thankful that he is so cooperative, it makes it so much easier on mom & dad.
Nicholas closed Friday night doing schoolwork. He worked on capital letters, drawings, dot-to-dot, and more. He was quite pleased with his work and felt great satisfaction with his completion of several pages from his workbook.
May 20, 2005 Blood Counts:
WBC: 6.9
HGB: 11.4
PLTs: 161
ANC: 6,134
___________________________
Friday, May 20, 2005 1:29 AM CDT
Day plus41
SOME CONCERN WITH HIS FINGERS
Although the left index finger is healing, we learned that it had a bacteria infection, Staphylococcus. Identification of the exact species is pending, and in the meantime the broad antibiotic, Vancomycin, continues to be administerd. And while the left middle finger was also swollen on the tip, tonight a white dot has begun to form--similar to the swelling and white dot of the index finger.
AND WE'RE GETTING READY FOR DISCHARGE
Nicholas is doing pretty good. Today he began taking two more medicines orally: Prednisolone (the steroid) and Ranitidine (Zantac). The doctors are planning his discharge for this coming Monday or Tuesday. Remember, when he is discharged we will be going to the RMH for the balance of 100 days (1st week in July).
We will keep you informed of the next phases of the journey and the medical concerns. We will talk about the hurdles leading up to the 100 days, and the hurdles after 100 days. Although the BMT process is a long and slippery road, we know that God is in control and we give Him the glory for his Love and care of Nicholas has enabled him to travel the journey with so much energy and strength. Your continued prayers are so welcome—the journey continues.
NICHOLAS’ QUOTES FROM THE DAY
1. After eating his pretzel, he looked down at his stomach and said, “You’re welcome big sugar momma tummy!”
2. When explaining to mom what the nurse practitioner told him he could eat, he said, “Can you believe it, I’ve never had this much food.” Putting things in perspective, we are reminded that a little can seem like a lot.
May 19, 2005 Blood Counts:
WBC: 7.4
HGB: 12.3
PLTs: 181
ANC: 6,608
___________________________
Wednesday, May 18, 2005 11:35 PM CDT
Day plus40 (Day 180 since Nicholas' leukemia diagnosis)
We thank God and rejoice in His Love moment-by-moment through this journey. It is redundant to say over and over that Nicholas’ energy, enthusiasm, joy, spirits, etc. are amazingly high—but thanking God for the blessings of guiding and shielding Nicholas step-by-step is so right.
And as we hear from many of you, this journey has touched many lives in powerful ways. Mom & dad have learned from Nicholas, you, and certainly through God. We are all witnesses of the blessings along this journey, and again mom & dad thank you for your prayers, care, and love for Nicholas’ continued healing.
BIG NIGHT AND GREAT NEWS
Yeaaaah! Cyclosporine labs tonight reveal that his level is at 298—in range. The level indicates 1) If it is being absorbed into his body now that it is administered orally and 2) His gut is healing.
OTHER MEDICAL STUFF
CYTOGENETICS: The doctors now expect these lab results to be received next week (not today).
LEFT INDEX FINGER: It is healing nicely.
THE STEROID: Nicholas will remain on the steroid at this time because the risks associated being on it is better than the risk of stopping it and potentially having GvHD flare up.
OH, A FUNNY THING NICHOLAS SAID TODAY
Nicholas added pretzels to his food consumption and while eating them he paused, closed his eyes slightly, saying with emphasis, “This is the life!” He now eats three food items daily; Nicholas stool output is daily evaluated to determine if an additional food item can be added or one reduced.
Early each morning he anxiously awaits the nurse practitioner to enter the room to find out what he can eat. For any of you familiar with the movie, Lion King 1 1/2, you may remember the line "Whaaats on the menuuu?" This is what mom & dad think is going through his mind when the nurse practitioner walks in.
May 18, 2005 Blood Counts:
WBC: 5.6
HGB: 12.0
PLTs: 160
ANC: 5,073
___________________________
Tuesday, May 17, 2005 11:08 PM CDT
Day plus39
ANOTHER QUICK VIEW:
CHIMERISM TEST: Results of the first test came back revealing that 95 percent of the bone marrow at work in Nicholas’ body is from the donor and 5rom Nicholas. This is GREAT and over time the expectation is that it will continually increase to 100 percent. (Details in May 10 journal).
CYTOGENETICS TEST: Results should be in tomorrow. This test will reveal any hypodiploid cells which was the December 27, 2004 diagnosis that we received directing us to have Nicholas undergo the BMT. (Details in March 27 journal.)
LEFT INDEX FINGER: Puss was oozing from the small open area on the tip of Nicholas’ finger, which is a good sign because it indicates that his body is showing that it has the ability to fight infections (even when his WBC was low). Tomorrow we’ll learn the results of a culture taken from the puss tonight toward determining the cause of the infection.
CYCLOSPORINE: His Cyclosporine level was 311 (240-310 target range) and tonight it was administered orally. We PRAY that his body absorbs it unlike the last time he was on it and we can get it in range.
OVERALL
The rash continues to clear up—takes a while, gut is healing—takes a couple of months, and Nicholas enjoyed his bread and tuna. He energy and spirit is still very strong. And the journals certainly help to keep his spirits strong—thanks.
May 17, 2005 Blood Counts:
WBC: 4.4
HGB: 12.2
PLTs: 143
ANC: 3,788
___________________________
Tuesday, May 17, 2005 10:14 PM CDT
Day plus38
QUICK VIEW OF HOW THE DAY WENT AND WHAT WAS SAID
1) Yesterday afternoon we noticed a blood blister like under Nicholas’ left index finger, at the tip of the nail. Antibiotics are being administered to manage any possible infection, and it is being examined regularly.
2) His stool output was within range, so finally he got to have a second food item—he chose tuna (plain) and he had it with his two slices of bread today. Nicholas said, “Delicioso,” (Spanish for delicious) as he was savoring each and every bite. He even had mom pour the crumbs from the napkin he was using into his mouth—he didn’t want to waist even the smallest of crumbs!
3) If all goes well today, he will start oral Cyclosporine tomorrow (this is GREAT because we have to start getting him back on oral medicines before he can be discharged).
4) Bilirubin is still high at 2.0, however, it is stable (not going up).
5) All kidney function looks GREAT.
6) RBC transfusion. Nicholas’ HGB was at 9.1 and when it is below 10 a RBC transfusion is given. Although it was at 9.9 and 9.7 the last two days the doctors were holding off to see if the marrow would produce enough on its own.
Remember, last Wednesday the IT Methotrexate chemotherapy was administered and that along with the other immunosuppressive medicines impact the marrows ability to produce… This was the fourth blood transfusion since his BMT, which is pretty good because on average a BMT patient has transfusions at least once per week.
7) Blood labs were drawn tonight to determine the Cyclosporine level; we’ll have the results tomorrow morning.
8) His skin looks good. The only evidence of the rash is some dry, darkened skin that should look normal again--it may take awhile.
9) Nicholas and mom flew a small-boxed kite off the BMT patio (second floor).
May 16, 2005 Blood Counts:
WBC: 2.8
HGB: 9.1
PLTs: 188
ANC: 2,307
___________________________
Sunday, May 15, 2005 10:05 PM CDT
Day plus37
ROLLER COASTER INCLUDES EATING
Well, today Nicholas was ready to eat chicken (as his second food item from the GvHD list as his gut continues healing) along with his 2 slices of bread but he was told that he couldn’t have it because of his stool output (diarrhea). The output is measured from 7:00am to 7:00am and last night he had more output than expected. That brought the 24-hour period total to 230cc and we were shooting for no more than 200 at the most.
As indicated in the journal yesterday, …eating, stop eating, eat, eat a little more, slow down eating, the “roller coaster” continues even with eating. Nicholas was only able to have the two slices of bread today. With the bread toasted and sliced into sections, looking at his plate he begins to eat like it is a 5-course meal, really!
AND the Cyclosporine level was a little high at 311 (target range for Nicholas is 240-310) so the dose was decreased. (The April 29, 2005 journal talks about the importance of Cyclosporine.)
Note: Tomorrow is when we learn more about the Bilirubin status, not today.
BUT NICHOLAS REMAINS ENERGIZED AND JOYFUL
So how do you think our little sunshine, angel can sustain his energy and joyful nature? Although he is still getting nutrition in a bag (TPN), God is filling him with the bread and everything is just fine.
Cyndi, mom’s friend from work brought Matthew (our 16 year old) and Jordan (Matthew’s friend who is like our fifth son) to visit. Nicholas enjoyed Matthew and Jordan playing with him. And mom finally left the hospital for the first time while Nicholas was hospitalized, although for a very short period of time. It took dad a lot of pushing to get mom to go outside without Nicholas and dad was very happy that Cyndi helped to get her out.
While mom was out, Nicholas and dad went for a walk in the hospital and spent time on the BMT patio just sitting on a bench, talking, and teaming up on a computer game together. We were surprised twice—once when a squirrel crossed right in front of us and a bird in a tree branch above was jumping from limb to limb. We are thankful that we can still enjoy good things!
May 15, 2005 Blood Counts:
WBC: 3.0
HGB: 9.7
PLTs: 210
ANC: 2,619
___________________________
Saturday, May 14, 2005 11:13 PM CDT
Day plus36
WHAT’S GOING ON WITHIN HIS BODY
It appears the affect—suppression of his immune system (blood counts)—of the May 11 intrathecal (IT) chemotherapy with Methotrexate is being realized. Although his numbers have dropped, we are grateful his ANC is still over 1,000.
The rash is drying up and getting better and better, the diarrhea is still easing up. We will learn more about the status of the Bilirubin through tomorrow’s chemical panel blood work.
Today, Nicholas had two slices of bread—toasted, one this morning and one tonight. He didn’t like having to stop eating when the gut GvHD was diagnosed, understandably is so happy to just be eating bread, and is so ready to continue eating regularly. Tomorrow he gets to choose an additional food from the GvHD list and he chose chicken.
LOTS OF FUN
Nicholas had a really good day with his friend and past pre-school classmate Neda and her sister Hana. The weather was great and they played on the BMT patio for quite awhile soaking up the warm weather and laughter. They enjoyed the ladybugs, birds, talking/playing with the parents, and oh yes, Popsicles. (Please click on View Photos.)
The day began uneventful medically and ended uneventful medically—GREAT.
JOURNEY TO HEALING
We mentioned patience and that really is the word for every day. Today was so much fun, and at times seem to forget the journey that we are on. At the end of each day the reality sets in and we again live the changes placed on Nicholas and the rest of our family. And through it all we close each day knowing that being with God frees us from all perceived limitations—it is really, really hard though being on this journey. But God’s plan is right, and we are closer and closer to God each day and His leading us provides comfort!
May 14, 2005 Blood Counts:
WBC: 2.6
HGB: 9.9
PLTs: 214
ANC: 2,197
___________________________
Friday, May 13, 2005 11:30 PM CDT
Day plus35 (Day 175 since Nicholas’ leukemia diagnosis)
THANK YOU
Thank you for your continuous prayers, guestbook entries, and warm thoughts. The guestbook entries provide daily boosts of encouragement and some fun! And mom & dad share your thoughts with each other as well as Nicholas.
GOOD NEWS, AND STILL WATCHING THE BILIRUBIN
The RASH is going from stable to showing clear signs of improvement—YEAH! And there was no significant change to the BILIRUBIN, it is still high and out of range. Remember, the Cyclosporine addresses GvHD and it is in range so the “Bilirubin Watch” continues without any specific concerns right now.
SCHOOL
Nicholas participated in the school program today. It was difficult for him to move about in the class with his IV pole, and hard to participate for lengths of time with his mask on. However, he liked solving problems on a Candy Land computer game and said, “It was very hard but it was super fun.” And he said, “I had to figure out letters, did some writing, tracing, and it felt good.”
OVERALL
Patience now means so much to us, along with celebrating simple things of “daily” life.
May 13, 2005 Blood Counts:
WBC: 5.5
HGB: 10.2
PLTs: 237
ANC: 5,142
___________________________
Thursday, May 12, 2005 2:39 AM CDT
Day plus34
NICHOLAS’ QUESTION OF THE DAY
As Nicholas was waking up he asked mom, “When is Lizzie going to be here?” You know what he wanted to ask her, right?
Then when his nurse came into the room, Nicholas asked her to get Lizzie (nurse practitioner who was consulting with his doctor). A few moments later Lizzie walked in saying, “I understand someone is summoning me!” Nicholas said, “WHEN CAN I EAT?”
Lizzie told him he can have one thing on their list and he could eat now. Nicholas asked for toast and then, looking at a fortune cookie that we had on the counter he asked if he could also have that fortune cookie. She told him if he eats just that one he could have the toast too. Nicholas said okay and, “I can’t wait to get my paws on it.”
Nicholas gobbled up the fortune cookie and then asked mom what did his fortune say. It read, “You will enjoy good health, you will be surrounded by luxury.” Nicholas then said, “I can’t wait to get my grabby paws on my toast also.” And he got to put a little jam on his toast!
A GOOD DAY
The day started out to be a good one—he got to eat. He had a quiet, cuddly day with mom. And when dad came to the hospital after work, Nicholas, mom & dad went for a nice, quiet stroll around the hospital. The day ended being a good one also—Nicholas and dad played basketball, danced, and we all enjoyed a Popsicle.
AND MEDICALLY…
1) The rash is stable
2) Seeing how his gut reacts to solid food (well, the fortune cookie and toast) to determine when he can go back on oral medicines which will be a factor in being discharged from the hospital
3) Tomorrow’s lab work will provide information on the Bilirubin (talked about in yesterday’s journal)
Overall, Nicholas is in very good spirits and entertaining to everyone who comes into his room or he comes across in the hospital. And, he is back to saying to others: “Do you want a piece of me?” and “What’s your name, what’s your whole name?” Remember, he remembers their whole names. Nicholas said, “Once I get to know them, then I know their whole name.”
May 12, 2005 Blood Counts:
WBC: 6.4
HGB: 10.5
PLTs: 244
ANC: 5,536
___________________________
Wednesday, May 11, 2005 10:36 PM CDT
Day plus33
EARLY MORNING
Nicholas was still half asleep when he sat up with a “smirk” on his face and said, “One more sleep and I get to eat.” He was remembering that tomorrow is the planned date to begin eating some solid foods.
TODAY’S PROCEDURES
Because this was the first operating room procedure at Stanford, Nicholas asked the doctors and nurses to do two things:
1) He did not want the anesthesia through a mask, he prefers it through his catheter so that he does not have to smell anything
2) He asked that they not talk while the anesthesia is being administered because it makes him feel dizzy hearing them talk. (These were two “standing” request at Children’s Hospital-Oakland and the medical staff, of course, accommodated his request.)
Nicholas did GREAT before, during, and after the procedures. We are so thankful that he has always handled the anesthesia very, very well. As always, he woke up just like after having a nice night’s sleep: opened his eyes, looked around, and said hi—like nothing had happened.
WHAT THE DOCTORS SAID AFTERWARDS
The doctors said they couldn’t ask for the marrow to look any better. “It had a nice variety of cells and no signs of blasts (leukemia); it looked wonderful so that is good news.” The results of the chimerism and cytogenetic tests should be received by next Wednesday. We will anxiously await the results! Praying for more good news!
WHAT NICHOLAS SAID AFTERWARDS
“We do not have to have anymore of these bone marrow tests; I already know that it’s working because we take care of ‘it’ everyday.”
THE REST OF THE DAY
After returning to his room, mom & dad talked with Nicholas for a little bit and he curled up into his bed and fell asleep.
Late afternoon dad and Nicholas went for a walk: not in a park, not around a lake or reservoir, and not in the dirt of course. But we talked about the three rugs we have placed in his room that represents the park (green rug), water (blue), and dirt or playground (tan). We thought, and talked about the times we experienced in those settings and how we have pretended to do those things in the hospital. Then we went onto the BMT patio and watched the birds, planes, and helicopters in the "blue" sky. We then played hide-and-seek in the hallways of the BMT unit, and then Nicholas sneaked up on some of the nurses to scare them with one of his favorite phrases since his leukemia diagnosis—“Boo, did I scare you!”
THE RASH
Oh, how quickly we focus and concentrate on what's in front of us such as today's procedures. So, an update on the rash is that there is slight progress--it's looking a little bit better.
WATCHING HIS BILIRUBIN
Remember, the liver is one of the three primary areas of injury with GvHD. In addition to the blood counts reported via blood samples regularly drawn is a reporting on the chemical panel (chemical make up in the blood). The Bilirubin is one of the chemical reporting factors and it relates to the functioning of the liver. The target range is “below1.4,” Nicholas’ was 2.0 today, and looking back since his BMT it has never gone above the 1.4 target. Because it was the first reading that was high, it will be checked again on Friday and it may be the next stage of the "roller coaster" that we will be guided over.
PRAYERS
We cannot ever say enough about your prayers—thank you—and we pray that collectively all of us become closer to God and our loved ones. Please pray with us toward God’s continued “shielding” and healing of Nicholas.
May 11, 2005 Blood Counts:
WBC: 6.0
HGB: 10.9
PLTs: 269
ANC: 5,364
___________________________
Tuesday, May 10, 2005 11:31 PM CDT
Day plus32
DAD LEFT NICHOLAS AND MOM ALONE TODAY
Dad started back to work today leaving Nicholas and mom alone—but we know that they were not really alone for our Father, God, was watching over them and guiding dad to transition back to work. Dad was energized by the warm, engaging conversations from friends and colleagues. And that energy transcended into warm and engaging conversations with Nicholas and mom. So the love and energy shared with dad was shared with Nicholas and mom—we are thankful for this “circle of love” that all of you are apart of. AND dad will be with Nicholas and mom whenever he should be—like tomorrow during the procedures stated below.
NICHOLAS’ DAY
No significant change to the rash, yet. Diarrhea even less today!
This evening Nicholas was administered Dynacirc, a medicine that treats high BP, because his BP has continued to run on the high side lately. (Remember, on May 6 the journal stated that the combination of Cyclosporine and steroids being administered typically increases a patient’s BP. And Amlodipine, another BP medicine but lower dose used for maintenance, that he has been receiving daily since May 6 has not kept his BP down in the normal range.)
It was a beautiful day outside, and inside, mom helped to make it a beautiful day in the hospital and on the BMT patio:
1) Nicholas and mom walked around the hospital—and yes he went to the nursery again, seeing a nurse holding a baby
2) Nicholas and mom raced the length of the long patio path—Nicholas won, of course
3) Mom pulled Nicholas in a wagon, and Nicholas returned the favor pulling mom
4) Mom read several books to Nicholas, and tonight he wanted a rerun. He had mom re-read one of the books—“Corduroy” about a stuffed bear with green overalls in a department store
5) Nicholas painted a ceramic lion
6) He colored and painted a picture of a sunshine and flowers for Ms. Shirley (his former school teacher). Family friend, Soha, will deliver it tomorrow as a surprise
7) So, in the hospital we choose to help him enjoy his childhood of doing the things that he would be doing outside the hospital
VERY IMPORTANT PROCEDURES/TESTS TOMORROW (WEDNESDAY)
Tomorrow, Nicholas will go to the operating room for a 1st of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. So, these five will 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 will be done every two weeks.
Also, the 1st of three bone marrow aspirations and biopsies will be performed. These three will be done once a month to confirm that he is still in remission. And marrow will be drawn for the DNA chimerism test discussed in the April 27th journal. The results of this test takes about 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.
Please PRAY with us!
May 10, 2005 Blood Counts:
WBC: 5.7
HGB: 10.9
PLTs: 253
ANC: 5,226
___________________________
Monday, May 9, 2005 11:21 PM CDT
Day plus31
Well, the rash is somewhat better and most of the redness has gone away. The steroid that has been working toward healing the gut GvHD and the rash will not be tapered down until Nicholas—again—receives his medicines orally and they are absorbed into his body. (Unlike the oral cyclosporine that was not being absorbed into his body prompting the change back to it being administered via IV.) We expect oral medicines to start next Monday.
WHAT NICHOLAS IS SAYING ABOUT WANTING TO EAT
We also expect Nicholas to soon be able to start eating again versus the TPN. Light eating may start at the end of this week. Just about everything we do throughout the day prompts Nicholas to say, “Mom, please add (insert just about every type of food you can think of) to our list.” It’s almost like “word association.” For example when mom was reading a story that talked about roast beef, Nicholas said, “Put that on my list.” And sometimes out of the blue he says things like, “Can I have some yogurt because they let me eat jell-o?” “It’s kind of the same thing.”
Just as we were writing this journal, Nicholas said, “mom & dad how bout you just say I want to eat real fast—because I want to get better so I can eat.”
THIS IS SO HARD, AND WE HAD A GOOD DAY
Although we have now been living this leukemia and bone marrow process for almost half of a year, it’s still so surreal. Sometimes when we look over at the IV pole and see all of the bags and syringes of medicine it is so, so painful. It’s one thing to have physical pain that is temporal, but knowing what Nicholas is going through leaves an excruciating pain that sometimes paralyses us in thought. Even through all of the searching, reading, consultations, and understanding gained, at times we just cannot breath normally. We have some very tense times of reflection, and like we learned from Nicholas, we need to “just concentrate on my breathing.”
We are so thankful for God’s love as His listening and touch that we feel through prayer and sometimes tearful-quiet singing generates our ability to faithfully parent and trust.
So, through it all, Nicholas and mom & dad had a good day.
May 9, 2005 Blood Counts:
WBC: 4.0
HGB: 10.8
PLTs: 213
ANC: 3,424
___________________________
Sunday, May 8, 2005 11:20 PM CDT
Day plus30 (Day 170 since Nicholas' leukemia diagnosis)
Nicholas’s diarrhea continues to ease up—GOOD—but the rash is still prevalent. There has been some improvement from the rash covering most of his body. It is now concentrated on his underarms, neck, face, and head. Tomorrow the doctors and mom & dad will talk about the rash and next steps.
RMH UPDATE
We are now planning for Nicholas to be discharged from the hospital on May 16, 2005, and we expect to then be at the RMH.
MOTHER’S DAY
Happy Mother’s Day to all of you wonderful mothers—your expressed love to Nicholas, mom & dad, and our family has been a beautiful gift to us and demonstration of your motherhood. We thank you so very much!
Nicholas seemed to enjoy Mother’s Day. As mom was opening a few gifts of our love, he was drawing pictures for her and one-by-one handing them to her. The sunshine and tulips were the theme in his drawings.
While mom has been EVERYTHING to Nicholas and simply amazing with 24/7 intense care and love, Nicholas has been EVERYTHING to mom & dad with his 24/7—really 24/7—joy and love. As much as mom is where she needs to be, with Nicholas, she battles with being the mother she wants to be with her other boys.
Note, as I think you know, even during the very, very difficult weekend when Nicholas was engrafting and had the fever & rash, we are daily amazed by his outlook of being positive toward just about EVERYTHING. After that difficult weekend, we asked Nicholas what was he thinking about and he said, “I was just concentrating on my breathing.”
May 8, 2005 Blood Counts:
WBC: 4.3
HGB: 10.8
PLTs: 201
ANC: 3,723
___________________________
Saturday, May 7, 2005 11:21 PM CDT
Day plus29
WHERE WE ARE ON THE CURRENT “DOWN” PORTION OF THE ROLLER COASTER (frustrating)
Nicholas’ diarrhea has decreased significantly. However, his rash has not improved—at least not yet. Nicholas has been amazing (as you have witnessed) and we continually PRAY that the rash will clear up.
Following is an excerpt of a prayer we received from friends and their church. “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.” WE ARE SO GRATEFUL FOR YOUR CONTINUED PRAYERS, and continue to give God all the glory for guiding Nicholas through this journey.
Remember, the primary areas of injury with GvHD are the skin (rash), the liver (thank God Nicholas has been shielded from any injury) and the gastrointestinal tract (gut GvHD). And remember that the immune reaction, such as rashes and gut GvHD, of the BMT (specifically the transplanted T lymphocytes) not only has the potential to attack Nicholas’ normal tissues—as we are seeing—but to recognize and attack any malignant cells within Nicholas. For example, case studies have shown that the more prominent the GvHD the less likely was leukemia to return. So we are claiming that God’s omnipotence, omniscience, and omnipresence is at work, and will shield Nicholas toward making him whole.
NICHOLAS’ DAY
Nicholas enjoyed searching for insects on the BMT patio, watching a helicopter land, playing games, painting, acting out Power Rangers/karate moves with a ball swinging from the ceiling, playing basketball—he beat dad so he got to pick the movie for tonight, and playing in the bathtub.
MOM & DAD
Mom & dad work really, really hard to make the moments, hours, and days normal for Nicholas relative to activities and learning. So much so that we really don’t focus on ourselves—and we know that this will also be good for Nicholas to see and understand, so we will create moments for us as well.
Also, remember that the cyclosporine and steroid are immunosuppressive so they can suppressive his blood counts(keep them down).
May 7, 2005 Blood Counts:
WBC: 4.7
HGB: 10.9
PLTs: 135
ANC: 4,037
___________________________
Friday, May 6, 2005 11:32 PM CDT
Day plus28
WHAT’S KEEPING US IN THE HOSPITAL
Although Nicholas had less diarrhea today, it is still a concern relative to the gut GvHD. And the rash was worse today; thankfully it was somewhat clearing up as he was going to bed. This evening the steroid dose was doubled. We PRAY that the steroid clears up the rash, is a benefit toward healing the gut GvHD, and Nicholas is shielded by God from steroid side effects. As always, mom & dad are so thankful Nicholas is the “strongest person” we know, because his strength is a great help toward helping us through this journey.
Also, now that his cyclosporine is in range, and generally being on cyclosporine and steroids increases the blood pressure, this evening Nicholas started taking amlodipine to treat high blood pressure (BP). What a twist to the “roller coaster!” We wanted his cyclosporine level to be in range and now that it is, coupled with the steroid, we are administering another medicine to manage the possible BP side effect.
WHEN WILL BE GOING TO THE RMH
The next targeted day that Nicholas will be discharged is this coming Thursday, May 12, 2005.
COMMENTS FROM NICHOLAS
Remembering that he is now on a liquid diet, read what he said:
1. “Mom, don’t eat Cheerios anymore, you know I can smell them.”
2. “Mom, have you been eating carrots? I thought so, I can smell them.”
3. “Dad, don’t buy and bring mommy anymore food because it makes me hungry. Write a note as a reminder.”
May 6, 2005 Blood Counts:
WBC: 5.8
HGB: 11.1
PLTs: 187
ANC: 5,156
___________________________
Thursday, May 5, 2005 11:31 PM CDT
Day plus27
CYLOSPORINE LEVEL IN RANGE, BUT A COUPLE CONCERNS
The cyclosporine level is 263, within the target range for Nicholas of 240-310—GOOD.
However, the diarrhea has increased and Nicholas sporadically complained of lower stomach pain throughout the day. Also, shortly after midnight this morning (Thursday), his stool had tissue from his intestines in it. Mom & dad’s heart hurt so much to see this, and although we were told it is part of the process it did not provide much comfort. The tissue from the stomach should repair itself. Note: It appears the increase in the WBC we have seen the last few days was because it was being produced to work toward healing the stomach. And the WBC is down today as the cyclosporine is at work and the stomach is healing.
And, tonight the rash on his upper body and head is worse than yesterday. We were expecting the slight increase in the steroid dose on Tuesday night to significantly reduce the rash.
Tomorrow we will talk more with our doctors regarding next steps relative to these concerns.
THANKFUL
We are so glad that God is a loving God and enables Nicholas to continually be amazingly strong and energetic. And we pray that God continually provide wisdom to our doctors, enable us to make the right decisions, and shield Nicholas.
Also, that our nurses continually show up in a very, very caring way. And, thankful the nurses and doctors are so patient with the continuous questions and engagement from mom & dad.
NICHOLAS SCARED MOM--BUT IT WASN’T ILLNESS RELATED
While mom was returning to the room, from across the hall, after getting hot water for tea, she heard Nicholas screaming. She was running into his room, spilled her tea, and Nicholas screamed, “I was scared.” He was afraid of a Scooby-Doo game that he was playing and has played many times before. Mom, still shaking, promptly took the game out and hid it.
OTHERWISE A GOOD DAY
We spent the day outdoors on the BMT patio playing, enjoying the sunshine, and appreciating the breeze on our faces. Nicholas also spent time learning and playing on the computer with a Books-A-Live representative.
May 5, 2005 Blood Counts:
WBC: 5.9
HGB: 11.1
PLTs: 178
ANC: 5,015
___________________________
Wednesday, May 4, 2005 10:35 PM CDT
Day plus26
CYCLOSPORINE LEVEL VERY, VERY CLOSE TO OUR TARGET RANGE
The cyclosporine level is now at 236. Yes, yes, yes. It’s getting close to the target range where the doctors want Nicholas to be—240-310.
And, the rash on parts of Nicholas’ body is stable (not getting worse). We hope to see improvement tomorrow.
GUT GvHD
Based on the volume of diarrhea, Nicholas is stated to have stage 2 gut GvHD (scale of 1 to 4 with 4 being the worse stage). Thankfully, his diarrhea has decreased significantly today—good sign.
EATING OKAY BUT PLACED ON CLEAR LIQUID DIET
Although Nicholas has been eating okay, he was placed on a clear liquid diet to give his gut time to heal from the gut GvHD.
GUESTBOOK ENTRIES
Again, the guestbook entries are so helpful for Nicholas and just as helpful to mom & dad every day.
Nicholas, and mom & dad, were also happy to see the guestbook entry from one of our neighbors—good motivation for Nicholas because he loves the Fourth of July and we expect to be home in July. It was especially nice to read because Nicholas was just talking about our neighbors yesterday (comment in that journal).
SNAP-SHOT OF THE REST OF NICHOLAS’ DAY
1) Vital signs taken
2) Doctor’s visit and conversation
3) Talking with the hospital’s Reverend in our room (mom & dad, and Nicholas have good conversations with the Reverend)
4) Playing games in my room with a child life representative
5) Talking with the nurses and nurse assistant
6) Dancing with dad
7) Off the floor with a physical therapy representative for some fun activities
8) Playing on the window-bench seat with mom
9) Online with Nick Jr. for interactive learning and games
10) Fell asleep in mom’s arms and then napped on the window-bench seat
11) Making funny faces with dad
12) Reading of guestbook entries
13) Playing Yu-Gi-Oh cards with mom
14) Combination volleyball, tetherball, and punching bag
15) Getting ready to watch Disney’s “National Treasure”
16) Oh yes, and some oral medicines.
May 4, 2005 Blood Counts:
WBC: 11.3
HGB: 11.5
PLTs: 200
ANC: 10,407
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Tuesday, May 3, 2005 11:51 PM CDT
Day plus25 (Day 165 since Nicholas’ leukemia diagnosis)
CYCLOSPORINE LEVEL ON THE RISE…NOW AT 173, WE’RE GETTING CLOSER!
And, Nicholas’ rash is already starting to look better. But he has had more frequent diarrhea so he is on replacement fluid to keep his electrolytes in balance. WE PRAY that his rash and diarrhea gets better with IV cyclosporine and an increased steroid dosage (the steroid dose was being tapered down). And please PRAY WITH US--we don’t want Nicholas to get gut GvHD.
Blood counts and other blood results are showing that the overall functioning of his organs are right on target—GREAT.
OUR DAY
Of course, Nicholas roamed the halls playing various made-up games, and we played different made-up games in his room. The subject of going home came up, and when Nicholas said, “I miss home,” one of the nurses asked what do you miss. He said, “ I miss playing, and I miss my neighbors.”
Bath time was made to be a picnic at the beach… We had graham crackers with peanut butter and threw a small beach ball back and forth while Nicholas soaked in oatmeal bath water to soothe his rash.
Mom had a nice visit from a friend and we all had a fun time with her.
May 3, 2005 Blood Counts:
WBC: 12.3
HGB: 12.1
PLTs: 178
ANC: 11,156
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Monday, May 2, 2005 11:44 PM CDT
Day plus24
WE’LL BE IN THE HOSPITAL A LITTLE LONGER—CYCLOSPORINE LEVEL EVEN LOWER
Nicholas was not discharged today; hopefully we’ll only be in the hospital for a few more days. Although it would have been an early discharge relative to the process, it is a little disappointing because Nicholas has worked so hard doing all the right things. However, we are okay with being where we need to be and mom & dad will work hard to do the right things to keep him upbeat.
His cyclosporine level is now down to 72 and the target range is 240-310 (as indicated in the last few journals about this concern). The level has gone down since it was switched from IV to oral. The level has not been up to within the target range, and since last week the number has been going down—NOT GOOD. Although the doctors have made adjustments to the timing and dosage over the last several days, they are now changing the cyclosporine back to an IV administered medicine (40mg every 8 hours), versus oral, because there is a concern that his body is not absorbing it. SPECIAL NOTE: Today our doctor said she was not too concerned that his body is not absorbing oral cyclosporine yet—he started engrafting early and they thought he would be ready for the oral cyclosporine based on his body's quick response to the BMT and no signs of GvHD other than his skin. But, generally a BMT patient’s gut would not have healed by now if there were gut GvHD or mucositis.
GUT GvHD OR MUCOSITIS?
The rash on certain parts of Nicholas’ body is flaring up substantially from last Friday although clinically he looks good. It is all puzzling because gut GvHD is generally not mild and Nicholas is not showing the signs that are usually associated with gut GvHD. He does not have any consistent or major stomach pain, no cramping, his stool does not present itself in a consistent way with gut GvHD, and he is eating okay. Although he did not have any significant mucositis in his mouth and throat earlier during this BMT process, perhaps he had mucositis down low that caused damage to his gut that could be causing the cyclosporine absorption problem.
Nicholas has had traces of blood in his stool the last two days. The doctors are analyzing his stool further, checking for viruses (like rotavirus). They checked for viruses in his sinuses because he has had a runny nose for the last couple weeks, the result was negative--Thank you Lord.
WHAT COULD BE NEXT
If his cyclosporine level does not get into range, an Endoscopy may be performed to view the stomach, esophagus, and down to the small intestine. This internal scoping with a tube may shed light on what’s going on. We will have to evaluate the whole situation before performing an Endoscopy because there are risks associated with it as well. But, it is one day at a time. And our Father, God, is in operation guiding the wisdom of the doctors and giving us the thinking to do the right thing.
OTHER LAB RESULTS
If Nicholas’ body is not absorbing the cyclosporine, it could be that the other medicines are not being absorbed. However, the lab results from Nicholas chemical panel still looks great. And we are thankful that there is no evidence of issues with his liver or other organs.
SOME OF WHAT NICHOLAS DID TODAY
Left the floor (with mask on) with an occupational therapist to play basketball, bowling, and golfing. He is doing well physically that the occupational therapist have signed off on his need to participate in their program. And he had a surprise visit from his nanny-Kimmy and a friend. They had fun “just playing,” and watching Nicholas act out parts of movies—he has a great memory of movie scenes, scripts, and expressions.
Please pray with us for Nicholas’ continued healing as we are confronted with this stage of the roller coaster on his journey to being cured. We are so thankful for his unwavering energy, enthusiasm, and joy—he certainly brightens our days.
May 2, 2005 Blood Counts:
WBC: 8.2
HGB: 12.0
PLTs: 164
ANC: 7,068
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Sunday, May 1, 2005 11:07 PM CDT
Day plus23
EARLY MORNING, LATE NIGHT
Nicholas woke up this morning at 5:00, fell back to sleep at 6:00, and awoke at 7:00. He took a very late nap at 4:00pm and slept until 9:30pm. He’s going to be up late tonight!
CYCLOSPORINE AND GvHD
A slight rash has surfaced on various parts of Nicholas’ body that are indicators of GvHD. And we are still concerned about his cyclosporine level remaining low. Today the cyclosporine dose was changed to 100mg every 8 hours, and the lab draw/analysis will be performed early tomorrow morning with results around 10:00am. PRAYING—we are continually praying for his cyclosporine level to increase to within the targeted range of 240-310 and once again ask you for your prayers as well.
GOING TO THE RMH TOMORROW MAY BE DELAYED
Based on the cyclosporine level still being out of the target range, one of the doctors hinted that our primary doctor might want Nicholas to remain in the hospital until the targeted level is attained. Although the nurses and doctors have kept us informed, including being very up-front with us, tomorrow we will ask additional specific questions to get a better understanding of concerns, interventions, and about Nicholas’ metabolism that is apparently working the cyclosporine out of his body.
VERY NICE SUNDAY OTHERWISE—VISITS, OUTDOORS, AND MOVIE
We had a very nice day with two separate visits from friends and their family. Nicholas enjoyed playing outside on the BMT patio. He said jumping with his school friend and her sister was really fun. (Note: Tomorrow evening we’ll post a picture of these pretty cool looking “jumpers.”) During the afternoon visit Nicholas was asleep, but he’ll be able to enjoy the visit via the homemade cards and bookmark from the four girls. And our evening was capped off with a late movie (because of his late nap) on the window-seat bench. Remember, Nicholas likes sword fighting (perhaps because of movies like Peter Pan) so he really enjoyed tonight’s movie that mom & dad were going to watch themselves—“First Knight” with Julia Ormond, Sean Connery, and Richard Gere.
Nicholas' energy, enthusiasm, and joy is still amazing--praise God.
May 1, 2005 Blood Counts:
WBC: 8.9
HGB: 12.6
PLTs: 217
ANC: 7,938
Saturday, April 30, 2005 11:13 PM CDT
Day plus22
EARLY MORNING COUGHING SCARE
At 5:00am Sheila was awaken to Nicholas coughing like he was having difficulty breathing, and then he vomited. The nurse and doctor examined Nicholas: his "vital signs" were fine, lungs were clear, his oxygen level was a little low, and his respiration was a little fast. They started the oxygen and positioned it to kind of blow into his face, and gave him some Benadryl to relax him. He coughed for about a half hour, went to sleep, and he awoke feeling fine—praise God!
GREAT DAY OTHERWISE
Other than this morning’s episode, he had a GREAT day. Nicholas took mom & dad to one of his favorites places in the hospital. Do you remember what/where that is? The nursery, Nicholas really loves seeing the babies through the window. We had a nice visit from friends and spent time on the BMT patio. Nicholas was happy to have his mask off while outdoors and enjoyed looking for ants and other insects on the walking path.
CYCLOSPORINE
Referring to yesterday’s journal, today’s cyclosporine level is still low at 112 (target range 240-310)—ARGH. So tonight another adjustment was made to 90mg every 8 hours. Nicholas is taking this oral medicine at 11:00pm, 7:00am, and 3:00pm. After going to bed late Friday night, the coughing episode this morning at 5:00, it was hard for Nicholas to get up for the 7:00am cyclosporine dose. Tomorrow we will repeat the process including more labs for an update. We pray for a restful night.
THE JOURNEY CONTINUES AND SO DOES OUR THANKS
We are very thankful for daily blessings that we clearly see or experience. It could be that it is just the small things that perhaps could go unnoticed if we were not on “this” journey, however, we are so thankful every moment of every day for the small things. They do matter and are so very important in our lives today—and will be forever more.
We have a long journey yet ahead of us, we still manage it day-by-day, and we are still so thankful for our three older boys for their patience, understanding, and tremendous spirit of loving their brother from afar and managing their lives with mom & dad away. Thank you, guys!
April 30, 2005 Blood Counts:
WBC: 5.5
HGB: 12.9
PLTs: 242
ANC: 4,477
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Friday, April 29, 2005 11:27 PM CDT
Day plus21
We are so thankful for these GOOD days. Today Nicholas was kept busy playing basketball outside on the physical therapy patio with a few other boys, painting & crafts with mom, and reading at bedtime.
ENGRAFTMENT RELATED FOCUS RIGHT NOW
Acute graft vs. host disease (GvHD) is a reaction of the new bone marrow (graft) to a patient’s body (host). Acute GvHD is seen primarily in the skin, liver, and gastrointestinal tract during the first 100 days post-transplant (today is the 21st day post transplant). The most common immunosuppressive medications used in transplant are cyclosporine, methotrexate, and steroids. Nicholas has received the methotrexate; is being tapered off a mild steroid than began when he started to engraft and had the fever, rash, & respiration issue; and is receiving the cylcosporine. The early (acute) GvHD is sometimes followed by delayed (chronic) GvHD which may affect the skin, joints, eyes, inside of the mouth, bowel, lining of the heart or lungs, lungs, and liver. Chronic GvHD can vary from mild to fatal.
The rash Nicholas had two weekends ago was considered mild acute GvHD and that rash has cleared up (as stated in a previous journal). While Nicholas has been receiving cyclosporine and monitored to measure the level of it in his system, this past week the level has been going down when we wanted it to go up, although the staff has been making frequency/dosage adjustments to get it to go up. It’s a metabolism issue and the staff is surprised that he has not had any rashes—skin flare-ups. God is Good! The target range is 240-310, mid-week it was 163, and today 103. This afternoon the cyclosporine was changed from 90mg every 12 hours to 70 mg every 8 hours. Tomorrow afternoon’s lab results will provide an update to us.
A little GvHD can be a good thing because it has a graft vs. leukemia affect. So if any leukemia cells (cancer cells) had survived the pre-conditioning regimen before the BMT, the new graft would recognize them as foreign and attack them to kill them off. Therefore, the fact that his rash was on the mild side it is considered a good thing.
NEW PHOTOS
Please click on “View Photos” to see three of the latest photos (Nicholas posing for dad, in action using his karate moves, and eating mom’s ice cream).
April 29, 2005 Blood Counts:
WBC: 5.7
HGB: 13.1
PLTs: 214
ANC: 4,713
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Thursday, April 28, 2005 11:34 PM CDT
Day plus20
Yes, thank God, another GOOD day all around for Nicholas, mom & dad. Nicholas ate and drank well (grape juice was his favorite drink today), took his medicines without hesitation, and mom & dad are continually preparing to go to the RMH.
MORE DISCHARGE PREPARATION
Along with administering his TPN, there are several medicines we will be administering via IV and orally. There certainly is a level of comfort being in the hospital regarding the medicines and side effects. However, here, too, we trust in the Lord to guide us in our observations as we administer these medicines. More importantly, we trust in the Lord's continued guidance and shielding of Nicholas through the maze of obstacles BMT patients face.
SCHOOLING
Although Nicholas would be scheduled to go to Kindergarten in the fall, the hospital staff and teacher decided that he is ready and can start their Kindergarten program now.
THANKFUL
Although some of these journals may seem redundant in terms of things going well, we are thankful to be able to report out that things are going well. And hope that you, too, recognize the power of your prayers, our prayers, and God to navigate a course for Nicholas enabling us to say “GOOD, GREAT, AMAZING…”
April 28, 2005 Blood Counts:
WBC: 4.8
HGB: 13.7
PLTs: 233
ANC: 3,907
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Wednesday, April 27, 2005 11:42 PM CDT
Day plus19
HOW THE DAY WAS SPENT
And another GOOD day! Nicholas went off the floor learning and playing with a child life staff member (working with letters of the alphabet and art) and later with a physical therapist (playing basketball, of course, along with other activities). And he ate GREAT during lunch and dinner. He is working his mind and body, eating, and being a wonderful son. Nicholas is doing his part to “all this leukemia and bone marrow stuff,” so mom & dad are working at doing their part preparing to transfer over to the Ronald McDonald House (RMH).
Mom & dad learned how to prepare his TPN while out of the hospital. Mom prepared a sample one and hooked it up to the IV pumps. Mom is amazing with the medical care for Nicholas. The supervising nurse who taught us (well mom) was surprised at how easy it was for mom to learn and demonstrate the preparation and hook up; she asked the nurse practitioner if mom had a medical background. (Although mom and dad collaborate when writing these journals, mom doesn’t know that dad is complimenting her—once again—on the journal. But when you see something good and/or right, one should say it and recognize it.)
THE NUMBERS
Between Day plus30-40, the first DNA Chimerism test will be performed to monitor the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in Nicholas’ bone marrow. The goal is 100f the donor’s; however, it is okay if it is not 100t first. The Chimerism test will be repeated over time and we will be looking for an increase, not decrease, in the donor’s (T-cells and Neutrophils) marrow at work
April 27, 2005 Blood Counts:
WBC: 3.2
HGB: 13.2
PLTs: 199
ANC: 2,428
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Tuesday, April 26, 2005 11:33 PM CDT
Day plus18
PREPARING FOR DISCHARGE FROM THE HOSPITAL
Today was uneventful medically—GREAT—and the doctors/nurses began the conversations about Nicholas’ discharge which they scheduled for this coming Monday.
Tomorrow mom & dad will be taught how to work the portable IV pump that we will use at the Ronald McDonald House to administer Nicholas’ TPN until he is able to consume the necessary calories and fluids.
The overall journey is definitely not one where mom & dad choose to watch—we are proactively and consistently involved including the discharge phase where all parents or guardians get involved with the IV pump while away from the hospital. It’s somewhat therapeutic for us to be part of his care medically! In fact, we sure hope the nurses appreciate that mom & dad administer his oral medicines, and mom changes his central line/catheter (Broviac), while Nicholas is in the hospital. And we sure appreciate the care and engagement the nurses & doctors have with Nicholas during the course of their work.
ORAL MEDICATIONS—HE IS AWESOME
Well, you know that Nicholas recently celebrated his pre-school graduation. And now you know that tonight Nicholas, mom, & dad celebrated another graduation “of sorts.” Nicholas is now an oral medication master. He, truly, is awesome at taking his oral medicines. We can’t think of any different or better way for him to take them—he understands why it’s important and his approach is doing whatever he has to do to get home. And he says he likes to make us happy, "that's why I do it."
Nicholas amazes us everyday!
April 26, 2005 Blood Counts:
WBC: 2.4
HGB: 12.6
PLTs: 168
ANC: 1,632
PS: Yesterday, Nicholas' HGB was 9.8 and when it falls below 10 for BMT patients a red blood cell transfusion is given (which was done yesterday). That was only his second red blood cell transfusion since his BMT.
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Monday, April 25, 2005 11:07 PM CDT
Day plus17
Nicholas is “racking” up the good days as he really enjoyed today playing basketball, bowling, visiting babies in the nursery through their windows, hanging out with the nurses and doctors, and running—well lets say walking—laps around the nurses station. (With his mask on of course.) He ate well and took two additional oral medicines so cooperatively, and we are so thankful. The nurses were concern about these two medicines because their experience is that kids have a hard time taking them. He said one had no taste and the other had a mint taste.
GOING TO THE RONALD MCDONALD HOUSE VERY SOON
Amazingly, we were told that Nicholas may be discharged from the hospital and able to go to the Ronald McDonald House down the street this Thursday or this coming Monday. The following things are factors in determining his discharge date: no reaction to the tapering off of the steroid that began a week ago, yesterday; taking his oral medications; and eating and drinking a stated percentage of his total intake.
Although it will not be home, it will be a “stop” on our journey home. We expect to be at the Ronald McDonald House through the end of June.
THE NEXT PHASE OF NICHOLAS’ JOURNEY
One of the next few journals will talk about the first 100 days of the BMT process.
SPECIAL THANKS
Every single day the guestbook entries you write help us get through the days and phases of Nicholas’—our—journey. Thank you, everyone, including those that we have never met that have unique connections to leukemia and BMTs. All of you are providing us with a level of support and comfort that is very much appreciated.
MOM AND DAD’S DAY
Mom had a nice visit and wonderful lunch (in Nicholas' room) with a friend—these visits have really added a GREAT sense of comfort to mom. Dad went into his office and participated in a meeting (and will do so again tomorrow)—it really felt GREAT for dad to be around his colleagues who are part of our wonderful community of supporters and comforters. They “get it” and support dad toward being where he needs to be—with Nicholas and mom.
April 25, 2005 Blood Counts:
WBC: 1.8
HGB: 9.8
PLTs: 150
ANC: 1287
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Sunday, April 24, 2005 11:11 PM CDT
Day plus16
We are so thankful for another good day. The doctors and nurses continue to watch the overall engraftment process—including blood counts, chemical normalization, and the response by Nicholas’ body. It’s a journey within the journey. While we are thankful, we also try not to worry about the "tons" of negative consequences associated with the BMT process. We keep our focus on God and do everything we are learning to do through our prayers--we listen, learn, and advocate dearly for Nicholas!
SOME DAILY ROUTINE ACTIVITIES:
A) Weight-to determine whether the fluids in his body are properly balanced and to help evaluate nutritional status.
B) Bathing-for good hygiene because during the BMT/engraftment process his immune system is severely suppressed.
C) Mouth care-including rinsing with a saline solution 4 times per day
D) Vital signs-measurement of his temperature, pulse, breathing, and blood pressure at least every 4 hours to help determine how he is doing
E) Central line/catheter (Broviac)-daily changing of the dressing—by mom—and examination for signs of infection.
F) Lab work-blood drawn from the central line for analysis and reporting
G) Exercise/activities-to help maintain muscle tone and flexibility
H) “Activities of daily living”
TODAY
Nicholas ate well and the TPN is now reduced to 16 hours per day. He was full of energy and kept the nurses and mom & dad busy as he was roaming the BMT unit hallways again without his “IV pole.” Please click on “View Photos” and see him posing as Spider-man.
Mom & dad had a nice visit from friends, and Nicholas really enjoyed playing video basketball against them. Again and again, we know and feel that we are so blessed—thank you all so very, very much.
April 24, 2005 Blood Counts
WBC: 1.3
HGB: 10.0
PLTs: 157
ANC: 731
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Saturday, April 23, 2005 11:01 PM CDT
Day plus15
A GOOD day! Nicholas played, ran, ate, and spent time with mom & dad (well, every day he spends time with mom & dad and we try hard to keep the days fresh and fun for him).
He ate lunch really well but did not eat his dinner. Remember, Nicholas says his food doesn't have any taste. So we tell him to have bites to re-aquaint his taste buds with the taste of various foods. After trying pasta with meat sause, diced carrots, and a tuna sandwich (he requested this while eating his pasta), he said, "Okay my stomach is feeling better now." And he ate.
NICHOLAS TALKING ABOUT GOING BACK TO HIS HOME
Nicholas has been talking about going home and he knows that when we are discharged from the hospital we have to go to the Ronald McDonald House until the end of June 2005. (It's just a few minutes away from Stanford.) Nicholas said, "I want to go home, but I'll be okay at the Ronald McDonald House because it will not have all these machines and pumps."
LITERALLY RUNNING AROUND
Although being able to leave his room is now not new for Nicholas, today he was able to be off of his "IV pole" for a couple of hours so he was free from being hooked up. When he walked out of his room, he literally ran down the hall and pass the nurses station. The nurses said, "whoa Nicholas slow down." Well there are some times that he has to slow down, like when his respiration was high or his blood pressure was getting close to being too high. We'll add running in the halls to that list. But God's speed for everything else.
Out of his room, today he played hide-and-seek with mom & dad, visited kids through windows, and hung out around the nurses station entertaining them, and being entertained.
THANKFUL
A) For Nicholas' progress--he makes the overall process easier so many times for mom & dad.
B) For a strong little boy with with a big loving heart.
C) As always, for God's omnipotence, omnipresence, and omniscience. He makes it all and we are grateful for His ever-present love.
April 23, 2005 Blood Counts
WBC: 1.2
HGB: 10.2
PLTs: 136
ANC: 604
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Friday, April 22, 2005 11:54 PM CDT
Day plus14
HOW THE DAY WENT
Nicholas had a very GOOD day--it was uneventful medically which is GREAT. You may have noticed that the "white" of his eyes are red, this was caused by broken blood vessels when his platelets were low. The red will clear up and go away completely. By the way, it does not cause him any pain or impact his eye sight.
When the physical therapist came to his room this morning, he said, "... I'm ready to go; and I'll go by myself today." And he did go without mom & dad. Today he played basketball and baseball in the physical therapy department.
Mom took him for a walk around the BMT unit for a while and then mom & dad took him outdoors on the BMT unit patio where he was high above, overlooking the hospital grounds.
(On Sunday we will post a picture of this moment under "View Photos" where he posed with both arms up like a "muscle shot" and with an expression of victory--he was outdoors, no mask, and enjoying the weather until it started to rain. Note: when out of his room and not outdoors he has to wear his mask.)
The evening for Nicholas included a very long bath--fun and playtime, mom reading with him, and dad playing various games/activities with him using a large ball.
EATING, OR SHOULD WE SAY NUTRITION
Today the TPN was reduced to 18 hours per day and tomorrow night it will be reduced to 16 hours per day. Nicholas tried to eat some food throughout the day but just didn't want any. He says it just doesn't have any taste (which we understood would be the case) even though we have been ordering foods that are pretty seasoned or have a little spice to them because of this point.
So unlike the last couple of days, today he didn't eat any food--lucky him, he got his nutrition from a bag via IV.
THANKFUL
A) Nicholas continues to NOT experience any pain
B) He is really looking healthy--his skin, mouth, vibrant nature. And the body rash is almost completely gone as there is a little on his legs only. The steroid that has been administerd since last Sunday is scheduled to stop beginning this coming Monday.
April 22, 2005 Blood Counts
WBC: 1.5
HGB: 10.7
PLTs: 119
ANC: 679
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Thursday, April 21, 2005 11:17 PM CDT
Day plus13
Things continue in a very positive way. We are so thankful.
The physical therapist came by to get Nicholas out of his room for some physical activity. Nicholas surprised everyone by walking all the way to the physical therapy department and playing basketball, bowling, and some set of pop-and-catch the ball device that was great for hand-eye coordination. (Click on "View Photos" after 3:00pm Friday to see pictures from this outing.)
He also walked all the way back to the BMT unit, stopping by the nurse station on his floor for a brief showing to see several of the nurses and a few doctors all at one time. They all cheered for him.
LAB REPORTS AND A RED FLAG
As far as the monitoring of Nicholas' lab reports, his potassium was on the high side and it raised a red flag. The doctors ordered a few additional lab reports and will monitor this closely. An increased potassium level can mean his kidneys are somehow being affected. We continue to pray for healing, and that the issue was just the level of potassium added into the TPN. The potassium amount in the TPN was reduced and other lab work ordered to determine if the level comes back down into a normal range. Please include this in your prayers as we are holding onto continued healing and for this issue to resolve itself without further intervention.
EATING
Nicholas had a few bites of food here-and-there (cheerios, macaronni & cheeze, broccoli, wheat roll, and popcorn). This is great progress for a patiet just going through a BMT. We will continue to encourage him to eat whatever we can get him to eat. The taste of food changes temporarily after a BMT, so things right now probably taste bland or very different. And we recognize that most post-BMT patients just don't have their regular interest in food. We'll try spicy and salty foods as a doctor suggested. We will try it all because the sooner he is eating, the sooner he can be released from the hospital and to the Ronald McDonald House.
April 21, 2005 Blood Counts
WBC: 1.3
HGB:11.4
PLTs: 82
ANC: 789
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Wednesday, April 20, 2005 11:10 PM CDT
Day plus12
AND ANOTHER GREAT DAY
WBC and ANC were up from yesterday. Today's 988 ANC marked the second consecutive day it was over the target of at least a 500 ANC. Another milestone and record for having two consecutive days so quickly. As a result the antibiotics being given were stopped.
And, Nicholas can now leave isolation--he is no longer restricted to his room as he can go out to designated areas within his hospital unit--as long as he is wearing a specific type mask that he was fitted for this evening. Although he could have left his room this evening, we are saving that milestone for a picnic tomorrow on the hospital unit patio. Isn't this amazing? Thank God.
ANOTHER IMPROVEMENT SIGN
Today the TPN (IV feeding) was reduced to 22 hours from 24 hours per day. This evening he had a few bites of baked chicken and mashed potatoes, and popcorn while watching Daddy Day Care.
NOT WASTING TIME
When talking with the nurse-practitioner, Nicholas asked "When can I get my Broviac (central line/catheter) out?" Note: This is scheduled to happen several months from now.
THANKFUL
A) His rash has improved significantly
B) Nicholas, and mom & dad, had two consecutive "good" days
C) Nicholas' continued cooperation, spirit, and positive approach to all "this leukemia and bone marrow stuff"
D) A nice visit today from a friend (mom).
INFORMATION ABOUT NICHOLAS BLOOD COUNTS
One of the side effects of yesterday's last chemotherapy (Methotrexate) is suppression of Nicholas' immune system (effecting his counts), so his counts may go back down before continuing to go up to the targeted counts.
April 20, 2005 Blood Counts:
WBC: 1.5
HGB: 11.5
PLTs: 47
ANC: 988
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Tuesday, April 19, 2005 11:43 PM CDT
Day plus11
ANOTHER GREAT DAY
We were told that Nicholas is breaking a lot of the BMT records and that he is an A-plus transplant patient. Praise God. Rememer the Patient Control Analgesic (PCA) that delivers pain medicine? Well, today it was removed. Wow, isn't this amazing! Oh, and he hasn't vomited for three consecutive days now.
LAST DOSE OF CHEMOTHERAPY
This evening Nicholas received the fourth of 4 doses of Methotrexate (chemotherapy) as part of the BMT regimen. Another milestone and another celebration.
ENGRAFTMENT AND THE NUMBERS WE ARE WATCHING
We recognize how important you and your prayers have been to us on Nicholas' health and healing journey, so the following information enables you to better understand the targets we are now aiming for as engraftment of the donor's bone marrow takes place.
The "Our Targeted Blood Counts" section below provides the information that will be placed on the heading of this Home Page moving forward to keep you informed (below the picture above). With the information you can track with us how he is progressing regarding the "counts" of the stated day, and enables you to focus your prayers for Nicholas. Again, thank you so much for your prayers!
Engraftment:
Is when the donor's bone marrow begins to grow and mature in Nicholas' body. And it is a sign that the new marrow has "taken," noted by an increase in blood counts.
White Blood Count (WBC):
Type of blood cells produced by the bone marrow that are primarily responsible for fighing infection. A low white count is associated with an inability to fight any type of infection.
Hemoglobin (HGB):
Is part of the red blood cells that carry oxygen to the tissues.
Platelets (PLTs):
Type of blood cells produced by the bone marrow that are primarily responsible for the control of bleeding. A low platelet count means an increased risk of bleeding because the clotting factors are too low (may cause easy bruising, petechiae, and prolonged bleeding).
Absolute Neutrophil Count (ANC).
Is WBC multiplied by 10, multiplied by the number of "polys" (segs and brands) or neutrophils. It determines the number of the most important cells that fight bacterial infections.
With the beginning stages of engraftment, the numbers could go up and down for a period of time before they are stabilized.
OUR TARGETED BLOOD COUNTS
1. ANC of at least 500 for two consecutive days
2. WBC of 5.5-15.5
3. HGB of 11.5-13.5
4. PLTs of 150-400
5. ANC >1,000
APRIL 19, 2005 BLOOD COUNTS
WBC: 1.0--this number so soon is amazing
(Days after the BMT the WBCs were <0.1, 0.1, 0.2, 0.5)
HGB: 11.2
PLTs: 26
ANC: 792 and this number so soon is amazing
Mom and dad are so thankful, and know the journey continues so we will approach things one day at a time.
-Click "View Photos" after 2:00pm Wednesday for Tuesday's pictures-
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Monday, April 18, 2005 3:36 PM CDT
Day plus10 (Day 150 since Nicholas' leukemia diagnosis)
Nicholas' doctor came in yesterday afternoon (Sunday) from home to evaluate the fever & rash, and consult toward the appropriate intervention to take.
HAPPY NEWS
Yeh--happy, happy, happy day! Yesterday evening Nicholas' fever finally broke and he remained a-febrile (without fever) through the night and up to this moment. Amazingly (this word applies again), right after his fever broke and after many, many hours of labor-intensive breathing (concern with his respiration), Nicholas was full of energy. After it broke, one nurse who was with Nicholas over the weekend said, "Is he always high-energy?" Another nurse who cared for Nicholas Saturday night stopped in to see what others had been hearing Sunday night regarding how well Nicholas was doing. This nurse, too, was amazed with the turn around.
ENGRAFTMENT IS HAPPENING--THANK GOD
Today's (Monday) lab results show signs of early engraftment and you don't see it early very often, one doctor said to us. This is amazing and GREAT NEWS! Typically, engraftment starts around Day plus14, and later for transplants using a MUD. What a blessing. I guess the "roller coaster" continues--what a difference a day makes!
THANKFUL
A) For all the continuous prayers and for you continuously being with us in prayer & spirit.
B) Nicholas' rapid breathing over the last 24-plus hours has reduced significantly. His respiration has been extremely high--like he was running a 24-hour marathon and our doctors were concerned. (The fevers certainly contributed to the rapid breathing, as he was trying to keep warm when he was chilly.)
C) Beginnning of engraftment--again, thank you donor.
D) Rash is clearing up
--Click on "View Photos" for a view of Nicholas this morning--
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Sunday, April 17, 2005 11:53 AM CDT
Day plus9
Yesterday (Saturday Day plus8) was another very, very long night that continued into this morning (Sunday). Fevers, chills, rash, high blood pressure, and another Platelet transfusion. The fever broke once and continues, and the rash on his chest now includes his entire upper body and face. And all of this is part of the process.
Nicholas has not complained of any pain or itching; but it's so hard to watch over him as he shivers to keep warm although his body is very, very hot. Along with Tylenol, Benedryl, antibiotics, "cooling blanket," and cold cloths, we continously work to comfort him and to break the fever. We make him as comfortable as possible, praise him about his strength, cooperation, and coach him to take his medicines as well as to keep up the "good fight."
Again, the medical staff displays hard work caring for Nicholas as if he was their child. Mom and dad went on 4-hour shifts last night. Coupled with all of this, we tried hard to spend some quality time with our other three boys in celebration of their birthdays. Needless to say, Nicholas was happy to see them.
ROLLER COASTER
This journey to health and healing is like a roller coaster. We are thrilled about the progress Nicholas makes (and we get excited like going up on a roller coaster). Other times it's like "losing your stomach" (we feel so sick like going down on a roller coaster). It's like being on a roller coaster 24/7. Of course, we choose to focus on progress, creating our own when necessary, and constantly zeroing in on the joy that God brings us & being thankful.
SATURDAY
Nicholas did not have a lot of energy, however, we made up ways to stimulate his "playfullness." Sometimes we just made up games on the spur-of-the moment to be playfull, learn something new, or just talk about things.
THANKFUL
A) For Nicholas, his strength and inspiring approach to all "this leukemia and bone marrow stuff"
B) The Leukemia & Lymphoma Society-Team In Training who made Nicholas an honoree raised money for the Society via pledges and running many, many miles. And a team member stopped by to deliver Nicholas an Honoree T-shirt and a T-shirt signed by their members that included individual-personal words of encouragement. Thanks Kimmy (Nicholas' former nanny and team member who presented Nicholas to the team) and Christina (who not only is on the team and took time to see Nicholas today, but was one of his nurses at Children's Hospital-Oakland. Demonstrating passion for her job 24/7 balanced through personal joy is so evident).
C) Our three older boys joined us to celebrate their birthdays
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Friday, April 15, 2005 11:57 PM CDT
Day plus7 (2nd journal entry today)
This afternoon, Nicholas had a peaceful, relaxing time. It was un-eventful medically just the way we like it.
He played basketball live for a short period of time, catch, did some artwork, and a couple other activities with child life and physical therapy members. (This is a great help toward keeping Nicholas active and enables him to interact regularly with other faces than mom and dad.)
You have heard this part, but understandably, all of "this" is extremly hard on mom. She, too, has been amazing and her pain is awful. Dad will always be there "with" her and "for" her! Thanks for the many things that several of you have done for her! (Yes, dad just added this note because it is important to say and give thanks.)
Dad found a very good Japanese restaurant nearby, for a nice break from the hospital food. Mom was able to enjoy one of her favorite foods--shrimp tempura rolls, and dad was able to enjoy his--salmon teryaki and California rolls. On a different level, this was a little hard on mom and dad as well because at this time Nicholas is not eating and he is not able to have food from restaurants. He would have had his favorite--shrimp tempura.
THANKFUL
A) Nicholas' fevers broke for a period of time and he is going to sleep without a fever
B) Mom and dad were able to get a little rest
C) Ms. Shirley called and read a story to Nicholas
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Friday, April 15, 2005 2:08 PM CDT
Day plus7
Nicholas had a very long day and night yesterday (Thursday) and the long day continued into the early hours this morning (Friday). He had another platelet transfusion and then a red blood cell transfusion this morning at 3:30 and 6:00, respectively. We understand the blood transfusions are frequently required during the time of marrow engraftment, AND it is just so hard coupled with other aspects of the process toward his health and healing.
After the platelet transfusion early Thursday morning, Nicholas had a "reaction" that may have been a result of the fever he had, combined with the transfusion. Before the transfusion he was pre-medicated for a potential reaction and that contributed toward controlling the reaction so no other intervention was needed.
He had a fever throughout Thursday and it/they continue now. They have sporadically "broke." Antibiotics will continue until his numbers come up--until his ANC comes up to 500 for two consecutive days. We also understand that sometimes the fevers don't break until engraftment. And with engraftment it's expected his numbers will come up around Day plus12 to Day plus14.
Blood cultures and urine samples taken Wednesday evening after the fever first started were negative for infection--thank God!
Based on the above, you probably figured that Thursday was a quiet and not too active of a day for Nicholas. Yes, it was quiet and not too active. Mom and dad were in a constant reassuring mode to Nicholas (as always) coupled with being very, very watchful and prayerful over him. However, Thursday afternoon he played a little catch and bouned a ball back-and-forth with mom for a short period of time. Nicholas did not have his normal energy level; however, he remained incredibly alert and in-synch with everything that was going on. And through it all, he (or mom and dad) did not have to press his PCA to administer any pain medicine. He did not complain of pain or show any signs of pain--he more than copes with "this leukemia and bone marrow stuff" (as he puts it).
Today, Nicholas will be monitored more closely toward ensuring there is no fluid build up and no negative impact to his liver.
WE ARE THANKFUL:
A) Nicholas' blood pressure has not been high
B) His overall "numbers" and chemistry continue to look good
C) The staff state that while he is experiencing the situations described above that are expected, and are so difficult for a parent to watch and care for, "He looks good, he really does!"
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Wednesday, April 13, 2005 11:31 PM CDT
Day plus5 (Day 145 since Nicholas' leukemia diagnosis)
Nicholas had a very quiet day. Not surprisingly, he slept a lot more than usual and did not have too much energy. But he had time and found the energy to play and have fun. He painted with a staff member from child life and created a nice picture for mom (as of April 13 click on "View Photos" to see him painting). Nicholas also called his teacher, Ms. Shirley, and asked her to call to read him a story. (He will always call Ms. Shirley his teacher.)
And thank you DVMS administrators, teachers, parents, and classmates. You continue to amaze us with your support and actions.
Early evening he spiked a low-grade fever and it "broke" right away. About two hours later he spiked another low-grade fever and it also "broke" quickly. However, Nicholas received antibiotics for only the first time since his BMT.
Although the process indicated that mouth and throat sores would develop and worsen, today he actually needed less pain medicine. And he was able to drink water without any apparent difficulty. He is not eating at all and continues to receive TPN and Intralipids (fat content).
Also as expected, his blood counts have drastically dropped and he will need to have a platelet transfusion within a few hours. His red blood counts, however, continue to be amazingly GREAT!
WE ARE THANKFUL
A) No high blood pressure
B) He successfully took his oral medicine (with ice cream)
C) Fevers "broke" quickly
D) He is on target medically and responding very well to the process
However, the process is so scary and is hard on mom and dad--which is nothing compared to Nicholas and we thank him moment-by-moment for being so amazingly strong, confident, and cooperative. It's hard on Nicholas' three big brothers as well as they balance their focus on Nicholas and their school work. And it must be hard on you so we trust the journals and guestbook provide information enabling you to spiritually and virtually be with Nicholas.
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Tuesday, April 12, 2005 11:56 PM CDT
Day plus4
Today a Patient Control Analgesic (PCA) was hooked up. The PCA delivers a continuous flow of pain medicine. It enables mom, dad, or even Nicholas, to release a boost of the pain medicine by a push of a button once every 10 minutes. It seems to be working well, although with Nicholas it could be hard to tell because he generally does not complain. He is such a "trooper."
We have been trying all day to give Nicholas his morning oral medicine (Actigall, ensures his liver remains healthy). He vomitted three times right after taking it, and a fourth time he vomitted seconds before we were going to administer it. Benedryl on top of Zofran was given as it usually does the trick, but not today. The Benedryl did work to put him to sleep, as he fell asleep about 7:30 pm and woke up around 11:30 pm. Now he is wide awake. Oh well, it is all about Nicholas right now for us. Tomorrow, we will administer it in pill form by crushing it and mixing it with something like applesauce. This worked before with another medicine he had difficulty taking.
Aside from having the throat and mouth pain, and vomitting, Nicholas had a good day. Really, we had some very special conversations and time just being together.
REASON FOR BEING THANKFUL
No fevers and no high blood pressure--thank you God!
Our friend, Soha, came by and spent some time just chatting and mom and Soha enjoyed a cup of tea. It was a nice visit. Several hospital staff members (child life and physical therapy) came by and spent time just with Nicholas, as well as other members spending time with mom and dad. And the nurses continue to be so very caring (not just doing a job).
Our three older boys have birthdays coming up within the next week. We are planning to have them here overnight at a hotel so we can have dinner together and enjoy a mini celebration. We will either have dinner brought into us so we can all be together in Nicholas' room, or mom and dad will split up with one having dinner with them and the other dessert. But we would rather all be together with Nicholas, he would really enjoy it and so would we. We will have all of them together in some way.
Goodnight, more tomorrow.
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Monday, April 11, 2005 11:56 PM CDT
Day plus3
Once again we were told by all the doctors/nurses caring for Nicholas that he looks wonderful, lab work looks good, and he is doing great! We are so thankful.
Nicholas has been teaching some of the nurses how to play basketball on his play station-some are getting hooked on the game. Mom read to Nicholas, dad played live basketball with him and two-square (I'm sure some of you remember this game). And Nicholas enjoyed time playing by himself with his Peter Pan and Spider-man action figures (at the same time, what a combination).
As expected, a little mucositis is starting in his throat and a bit on the inside of his cheeks. Pain medicine was started tonight to get ahead of the pain so it's easier to control. It seemed to work well. Nicholas became a little sleepy but not too sleepy.
CELEBRATION OF THE DAY
His blood pressure was good all day and we have not had to start him on any blood pressure medicines at all yet. It is expected, so we're prepared if it happens. We pray that it doesn't.
A few days ago we started a medicine-treat cup. Nicholas came up with several things he would like as a treat for taking his oral medicines within one minute from the time we tell him it's time. One of the treats is to squirt mom or dad with water from a medical syringe after he takes his medicine--he really likes this one! The idea of squirting someone with the syringe came from a nurse--thanks.
We're looking forward to a nice nights sleep and a great day tomorrow. Good night.
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Sunday, April 10, 2005 11:59 PM CDT
Day plus2
We hope you had a happy Sunday; we had a good day. Mike, Linda, and Joey came by and Nicholas & Joey played through the window between Nicholas' small room leading into his hospital room. It was a little hard to keep them apart--I'm sure they just wanted to wrestle and play sword-fight as they usually like to do. Well, I guess we can say at least we're one day closer to that happening again.
WHAT'S HAPPENING MEDICALLY
A) Nicholas was having a little too much nausea so he was put on round-the-clock Zofran (an anti-nausea medicine) and today we had only one episode of vomiting. While we understand this is normal and expected, it doesn't have to be. We pray that this will ease up and ask for your prayers on this as well.
B) He started TPN (the nutritional supplement) tonight as the doctors want to keep him healthy as possible.
C) His blood pressure has been running a little high so that is being monitored, and there is an order in for blood pressure medicine should it get to a specific level.
D) Also, the staff has advised us to watch out for any signs of pain in the mouth or throat as he could start to develop mucositis any day now. We're praying he won't, but almost all of these kids do--especially ones that have a matched-unrelated donor (MUD) transplant like Nicholas did. Tonight Nicholas did complain of throat pain early and late evening so we are all monitoring this and prepared to administer medications to control pain. And guess what, Nicholas still asked for popcorn to go with his movie!
TODAY'S CAUSE FOR CELEBRATION (BEING THANKFUL)
A doctor commented on "rounds" today that Nicholas was her healthiest patient and they are very pleased with where he is--and boy so are we.
And we are praying for all kids suffering to be comforted and healed.
HOW THE NIGHT WAS SPENT
We cuddled up on the window seat and spent time together watching a movie, and talking about various things. We're trying to get to sleep earlier because we have a lot of sleep to catch up on. Day plus6 and plus14 are supposed to be some of the toughest so we'll have to be prepared just in case. It is still so very hard seeing Nicholas go through discomfort, pain, and wanting to be home enjoying life. We will find joy here in the hospital, it's just so hard overall.
Stay well and have a wonderful week; we miss you all.
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Saturday, April 9, 2005 5:41 PM CDT
Day plus1 (Today is considered "Day plus1" although yesterday was, because yesterday is now considered another "Day 0" based on the BMT infusion finishing at 1:00 am on April 8. This change is important because it determines the dates that certain medications will be administered over the next several weeks.)
Nicholas is doing GREAT!
CELEBRATION OF THE DAY
Although Nicholas is not eating like he normally does, he is eating well and everyone is amazed because by this time most BMT patients are on Total Parenteral Nutrition (TPN). TPN is indicated for patients when oral or tube feeding provide inadequate nutrients. He is expected to be on TPN at some point when mouth sores develop (Mucositis) as referenced in the next steps of yesterday's journal.
EVERYTHING ELSE
Last night was warm, comfortable, and Nicholas slept well. He woke up today in a good mood, we listened to music, read books, he played a lot of games (Go Fish, Pick-up sticks, Barrel of monkeys--yes these are still made, and a computer game that is entertaining and teaching--he was learning about shapes). He also did some "typing" on our computer we brought from home. Although it was a lot of computer equipment to bring from home, we use it for a variety of things including the screen saver that looks & sounds like a fish tank as the fish swim around and bubbles rise. And it provides a concert-like sound for our CDs.
Later today we will go bowling--well bowl on a desktop bowling alley. And tonight we will enjoy a family movie on the window-bench seat (as we try to keep him off of his bed when not resting or sleeping). Other days have corresponding events like bowling and a movie today. And we are using three different colored rugs (tan, green, and blue) to simulate being near dirt, a park, or water, for various in-room outings such as sitting under corresponding "mobiles" (sailboats, dolphins) or the multi-colored kite suspended from the ceiling.
Mom and dad are exhausted and feel like we can sleep for several straight days. Through God we know we can keep going. And mom has not felt the need for shopping mall therapy--the fabulous Stanford Shopping Center is across from the hospital.
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Friday, April 8, 2005 5:08 PM CDT
Day plus1 (Day 140 since Nicholas' leukemia diagnosis).
CELEBRATION OF THIS STAGE OF OUR JOURNEY
Last night (Thursday) at 9:30 pm Nicholas started receiving his bone marrow transplant. It was successfully completed this morning at 1:00 am. As the bone marrow was hanging on the pole and began to trickle through Nicholas' central line/catheter (Broviac), the doctor reminding Nicholas what it would be like said, "here it goes." Nicholas said, "Is that all!"
We had a deep-heartfelt prayer led by a long-time friend and minister that provided comfort to our family and helped us to stand immovable and fixed on our understanding of Nicholas' health and healing in the Name of Jesus. Then before the transfusion started, mom, dad, and two of Nicholas' brothers shared a prayer with Nicholas to prepare us and galvanize us in our Father, God.
Nicholas watched a DVD (he choose Sleeping Beauty), played with his brothers, family, & friends, and talked on the phone like it was a normal evening. When Nicholas was reminded that a BMT is sometimes referred to as a re-birth day, he said, "Am I 6 now?" He was awake during the entire infusion.
He did experience a little hypertension around 11:30 pm and it was quickly controlled by medicine. He slept soundly until about 6:30 this morning (Friday) when he vomitted twice during that hour. But the rest of Friday morning up to this point has been amazingly normal--later we will update the journal with today's overall experience.
NEXT STEPS
A) Wait for signs of engraftment, that Nicholas' body accepts the bone marrow.
B) Then, watch for the new marrow to "work." And not recognize Nicholas' body as being foreign which would cause an immune reaction called graft-versus-host disease (GvHD).
C) His blood counts are expected to drop drastically--which is part of the process--in response to the chemotherapy during his conditioning regimen and the FTBI. They'll go down before they go up (up to normal, which is what we want). Blood transfusions are expected to be frequent.
D) Nicholas will be in isolation for 2-4 weeks.
E) Next 2 weeks are generally the most difficult at this point because his counts are expected to be so low and his body would have nothing to fight off things that your body, and our body, daily fight off as routine.
F) He is expected to be tired and have mouth sores that will travel down. This is temporary and will improve with mouth care and when the new marrow starts producing white blood cells. He is also expected to contract fevers. HOWEVER, AS NICHOLAS HAS SHOWN ALL OF US, HE IS AN AMAZING BOY WHOSE JOURNEY MAY REWRITE THE TEXT BOOKS.
TWO IMPORTANT NOTES
1) To you donor, wherever you are, know that you are loved by so many for your incredible giving toward a gift of life without expecting anything in return. We know that you may have felt afraid, an overwhelming sense of responsibility towards the outcome, and perhaps unappreciated. You, donor, are a hero among heros. Your reward I can not state as God's love for those who demonstrate and live as you have shown Nicholas and mom/dad, is the greatest thing that anyone receives.
2) And, again and again, thank you everyone for all that you have done, said (including the guestbook entries), and prayed. Please continue and share in the glory of God's work on Nicholas.
CLICK "VIEW PHOTOS" TO SEE THREE PHOTOS FROM LAST NIGHT
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Wednesday, April 6, 2005 10:59 PM CDT
Day -1, second entry today as tomorrow is Day -0, the day Nicholas will have his bone marrow transplant.
Today was another good day for Nicholas. He had one episode with vomitting in the early evening, and this time it wasn't because we were trying to give oral medication... We'll see how he does with that later tonight.
Our friend, Gina, came by and provided us with some much needed time to sit and talk.
The wonderful radiology staff gave Nicholas a very nice Star Theater interactive planetarium. He loves to look at the stars, and now he can look at them right here in his room which we plan to do tonight.
This evening we received the news that the bone marrow will arrive at the San Francisco International Airport tomorrow (Thursday) night at 6:00 pm. Based on the delivery time to Stanford-LPCH and their labs completion of a cell count and other analyses, the infusion is planned to start around 9:00 pm. It is given just like a blood transfusion through his central catheter in his chest that he has had since the second day of his diagnosis. Nicholas will be monitored for any type of reaction throughout the infusion, which takes approximately 4 hours.
We have two radiation treatmens tomorrow morning, and then Nicholas is officially done with the conditioning regimen. We are so thankful this stage is over, and not just because mom had such a hard time getting up for the early morning treatments.
Thank you for the lovely journal entries--they certainly help pick us up through the difficult days.
We are so, so scared AND know that Nicholas is in the hands of God which is GREAT. We ask all of you to PRAY like you have never prayed before!
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Wednesday, April 6, 2005 2:05 AM CDT
Day -1 (Day 138 since Nicholas' leukemia diagnosis).
We had a great day on Tuesday. In between Nicholas' 3 radiation treatments we ate, played video games, other games like "I spy with my little eye," basketball, and talked. A computer volunteer came and worked with Nicholas on some interactive books and programs. Nicholas loves "clicking" (as he calls it) on the computer. And he loved the time spent with this volunteer.
Our doctor came in and said that everything is working just the way it's supposed to--we were happy to hear that.
Our friends Dave and Janie came to visit and brought us a "real" meal along with some home baked goodies (Thanks, everyone, all of you everywhere have been there for us in so many ways.) Their four daughters Victoria, Alexandra, Sophia, and Anastasia made Nicholas a beautiful banner for his room. It is absolutely beautiful and coincidently includes several of Nicholas' favorite things to do: merry-go-round, a train (like at Tilden Park), horse, etc.
As the night wound down and it was time for evening medicines, Nicholas promptly vomitted. He just hates the taste even though we have flavoring added to some. We feel so badly for him. We have taken to bribery in some cases and have a feeling that we'll have to start an IOU policy.
Early evening we took a trip down to the hospital's gift shop (his numbers are still good) and he picked out a Yu-Gi-Yo game, a couple of metal airplanes, and a barrel of monkeys. He was proud to pay with his "own" money.
Well, good night--we'll be up bright and early again for a 7:30 radiation treatment. Boy, they forgot to check with mom when they scheduled these appointments. Oh well, maybe that will help mom become the morning person she most definately is not. Until tomorrow...
Note: Home page picture as of April 5 shows Nicholas lounging at the Ronald McDonald House as dad was registering on March 31. And the pictures after clicking on "View Photos" are from his first week at Stanford for the BMT.
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Tuesday, April 5, 2005 2:09 AM CDT
Day -2 (and Day 137, instead of 136, since Nicholas' diagnosis).
Note: Home page picture as of April 5 shows Nicholas lounging at the Ronald McDonald House as dad was registering on March 31. And the pictures after clicking on "View Photos" as of April 5 are from his first week at Stanford for the BMT.
Yesterday's (Monday) total body irradiation treatments (TBI) were extremely hard for Sheila and me. Even though the three TBI's at 7:30 am, 11:30 am, and 3:30 pm were only about 6 minutes each after set up, seeing Nicholas strapped into a harness and alone in the room was very, very emotional for us. Especially when the "Beam On" light lit above the 10" thick doors.
But you know Nicholas, he handled the time receiving the TBI's very well. He was cooperative and patient with the process. And here are a couple humorous things: 1) During the first treatment he wanted the Space Jam DVD to be playing and it was okay with the medical staff. A couple times he began to move to the music of the movie and through the intercom we had to remind him to stay still (he has some movement while in the harness). 2) During the second treatment he was facing a wall so the staff put up a "Where's Waldo" page thinking it would take some time for him to find Waldo so we could be assured that he would be still, concentrating with minimal movement. Within 10 seconds he found Waldo so the staff had to stop the machine and turn to a different page. They laughed!
While Nicholas is in the treatment room, Sheila and I have access to a monitor and the intercom so we could see him but he can't see us. The three of us communicate back and forth via the intercom. Nicholas liked having Sheila read to him during one of the treatments--she has a beautiful, soothing mother's tone of voice.
After the third--and final--TBI Monday, Nicholas ran into a physical therapist he met Friday who promised to play basketball with him Monday. So, with the permission of his nurse we went to the physical therapy department. Nicholas choose to walk up some stairs versus the elevator and played one-on-one basketball with the therapist for about 20 minutes. His energy was incredible, and he made a lot of baskets after warming up. When we returned to his floor, the nurses at the front desk were amazed at his energy and seeing him demonstrate moves--jumping up and spinning around. His strength and energetic reputation has already been surfacing around Stanford.
He ate breakfast and lunch well; however, he experienced some jaw pain early evening. This is a common side effect with the radiation. As they were preparing to give him some Tylenol to take care of the pain, he was feeling nauseous and vomitted. After taking more medicine to prevent nausea and the Tylenol, he feel asleep. He vomitted again around 10:00 pm.
We constantly remind Nicholas how much we love him, how much you love him, and of God's love. We deeply express that it is, truly, amazing how he is handling all of this. And that he is amazing. When he talks about what he doesn't like about all of this leukemia stuff, he expresses himself so clearly about the medicines, appointments, being hooked up to a pole (IV), and then says, "I know I have to take the medicine to get better, I will take it."
The child life specialists, physical therapists, nutritionists, chaplin services, and nurses/doctors have been very proactive and attentive to Nicholas as well as Sheila and me. In so many ways they have already helped to reduce anxious moments and pressures that have been heavy on our hearts and minds.
Please, please continue with your prayers--thank you so much. We understand that it is "Thy will" be done and not "my will" be done; and we know that God's plan is the "right" plan. Yet, we are still afraid a lot. Something we heard today has been helpful: God is okay with us pushing back and being afraid. He will answer and comfort us.
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Monday, April 4, 2005 2:57 AM CDT
Day -3 (and Day 135 since Nicholas' diagnosis).
Yesterday (Sunday) Nicholas had a good day! Our doctor and nurses commented that he is doing "great"..."marvelous." Based on his energy and liveliness, his nurses couldn't believe that he just had the 2 days of high-dose chemotherapy. Regarding his vomitting Saturday night, one of the nurses came up with a way to take a medicine (Actigall) without any vomitting. The Actigall seemed to be contributing to the vomitting--no problems at all Sunday. She simply changed it to a tablet, crushed it, and mixed it with a cherry syrup.
Nicholas ate great, we did a lot of playing & reading, and he had his first visitors at Stanford--Annette and Marialena, friends from work.
Sunday afternoon he watched the original Wizard Of Oz for the first time. He enjoyed it, and several times during the movie he said, "Why do they sing so much." It was interesting to hear him say that because he has seen several live musical-like theatre events such as The Lion King and he never made that comment. At 10:00 pm we played a treasure hunt game by walking around the hospital looking for 5 objects: towel, crib, balloon, computer, and a wagon. Nicholas found all of the items, some of them he found in pictures hanging on the walls. Before bed we had a "Journey Into Space" via a National Geographic 3-D Space Projector that was a gift from several other friends from work. Thanks; several times during the viewing Nicholas stopped and said, "That is so beautiful."
And of course, we played basketball on the hoop in his room and on a video game. Nicholas played video games with other patients in the playroom. When a patient came into the playroom and was watching Nicholas and the others play, Nicholas stopped and said, "Come on, you can play too." We really admire his continued caring for others!
Just after midnight (Monday morning), Nicholas had a red blood cell transfusion. Although his hemoglobin counts were in the normal range, during the fractionated radiation treatments that begin this morning (Monday) the doctors need to be assured they are at a specific level.
Nicholas understands that he will be receiving the radiation treatments and said, "I know that I will be strapped down so I don't move. But that's okay because mom's going to be reading to me through the intercom."
It really comforts mom for her to hear the very positive comments, from the doctors and/or nurses, like above on how Nicholas is doing.
Mom and Dad say, "God, thank you for Nicholas, he is an amazing inspiration! Thank you for so many wonderful friends. And thank you for your Love." It is so hard to deal with everything that is going on, but we are keeping our focus on God and Nicholas.
Note: It's very late and we need to be ready by 6:45 am, so later today or tomorrow we will try to replace the home page picture and the three pictures under the "View Photos" icon with some from the last few days.
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Sunday, April 3, 2005 3:19 AM CDT
Day -4
Yesterday (Saturday), Nicholas had his second and final high-dose Cyclophosphamide. There were no immediate side effects, however, from 10:00 pm to midnight he was a little nauseated and vomited 4 times. This is expected with this high-dose chemotherapy even though he was administered medicine to prevent being nauseated.
Nicholas, understandably, does not like having to take all the medicines--and at times his reaction (vomiting) seems to be triggered by taste. A good thing here is that he always lets mom and dad know at least 30-seconds before he's going to vomit.
Other than that, and overall, he is doing GREAT--energetic, "up and about," and in good spirits. In fact, the visit by his doctor yesterday was very brief because everything is going well. Nicholas enjoyed playing with other kids in the playroom. And he ate great all day.
It scares us and makes us very, very sad seeing the visual affects associated with his sickness. It's so hard seeing him strain while vomiting. We pray with him, let him know he's doing everything right, and try to comfort him during these times.
Today (Sunday) is a "rest" day as he has no chemotherapy or in-hospital appointments. And, again, we are so thankful for your prayers and for how well Nicholas is doing considering the whole ordeal.
Mom is also thankful for the "egg crate mattress pad" for the bench-bed she sleeps on. She said it feels like she's getting a massage as she sleeps. Dad is also thankful to just be with Nicholas and mom. (Dad says thanks, Chris, Tim, and Matt for your spiritual help and undertanding during all that is going on with your little brother.)
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Friday, April 1, 2005 5:44 PM CST
Day – 6 (6 days until “day 0,” Nicholas’ BMT date)
March 31 we had a nice sunny drive to Stanford. Our room was not ready, however, we were able to complete the admission process and more scheduled chest x-rays. Because the room wasn’t going to be ready until 7:30 pm, and Nicholas’ “numbers” were very good, we treated Nicholas (well mom too) to Nicholas’ first dinner at a restaurant since his leukemia diagnosis. (Our doctor was very supportive of this time out.) We went to PF Chang’s across from the hospital—Nicholas was craving shrimp tempura and salmon. He happily ate every dish containing shrimp including fried rice, crispy honey shrimp, and a shrimp appetizer & crab cakes, as well as salmon!
When we arrived to the BMT unit for our first night at Stanford, Nicholas’ nurse greeted him by name right when we walked onto the floor. This was a warm, comforting feeling for us. And, it reminded us how our doctor always greets and engages Nicholas—first—when we interact with her. Nice touch and as she says, “I love what I do.” It shows!
While Nicholas was sleeping soundly and comfortably, we set up his room with a sail boat mobile, dolphin mobile, colorful kite, and many books, games, toys, that he enjoy. And of course, a personalize basketball hoop. We’re going to have some great one-on-one games even in the hospital. And mom will also play.
Nicholas had his IVIG last night and did just great with it (some kids have a reaction to this medicine). Today, Nicholas is getting his first high-dose chemotherapy (Cyclophosphamide) and will get the same thing tomorrow. He was patient and did just fine during his appointment today in radiology to ensure his chest plates fit. They will protect his lungs during the 3 ½ days of radiation treatments that begin on April 4. This treatment will last about 6-10 minutes three times per day during the 3 ½ days.
Not surprisingly, Nicholas is doing amazingly well. We are now in the playroom (with chemotherapy hanging on the pole) and will be going to the rooftop before dinner. The rooftop has a walking path with lots of plants, and we heard it has nice views.
Imagine this, we are talking about fun in the same breath as BMT. We thank God every moment and continually pray to understand his plan for our “sunshine,” Nicholas.
Thursday, March 31, 2005 11:52 AM CST
Day -7
Ok, here we go...we're all packed for our excursion to Stanford-Lucile Packard to start our first day of treatment. We'll have IV Cyclophosphamide today and probably a bunch of work. And we have some stuff to decorate the room so it'll somewhat feel like "home", that'll be pretty much our day today. We'll keep you all updated.
Don't forget to pray for us and keep the well wishes coming on the guestbook, we love reading them!
It's a beautiful day today, we are so thankful for that.
Matt's off to Joe's house for the next week or two, good luck Mary and Terry...we really did teach him manners, make him use them!
We miss you Tim, Chris, and Matt!
Nicholas would like to add his own message, so here it goes:
ghuryyfgfggwgqvahbxbvvvgdfhfuhuifgjijyjjohituopipkyoum
(the interpretation is "I don't know").
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Tuesday, March 29, 2005 11:01 PM CST
Nicholas is still doing amazingly well, and he had a fun, educational weekend. He played a lot of basketball over the weekend & the past two days, decorated Easter eggs with Kimmy (former nanny) & mom, and played games with the neighborhood kids. Nicholas wanted to, and several times watched "The Animated Passion"-story of the passion and resurrection of Jesus Christ. He enjoyed the separate sing-a-long songs as well.
Several times was the theme for the weekend as Nicholas also asked for multiple Easter egg hunts, and we did.
We spent a lot of time getting household things together to prepare for our stay at Stanford-Lucile Packard Children’s Hospital beginning March 31, and the bone marrow transplant scheduled for April 7. We are very tired and at times it’s hard to rest because we want to ensure we are doing everything we can. God is our strength and source of comfort, and of course Nicholas gives us so much joy that we just keep on going and going. We trust in God to help our other three boys to continually understand and hold onto the moments we share with them as most of our time has been with Nicholas.
Thank you, your “guestbook” messages are very helpful to us. And please continue to pray for the “guidance” of all as our journey continues.
Notes:
1) Please click on the “View Photos” icon below to see three of the pictures of Nicholas playing basketball this past weekend.
2) "My Doctors/Nurses album," to view please copy and past the following URL onto your browser: http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2
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Friday, March 25, 2005 11:58 PM CST
Well, all the pre bone marrow workup is completed as of today…Nicholas had a lumbar puncture to make sure the cancer did not show up in his central nervous system (CNS) and a bone marrow biopsy to make sure he’s still in remission. REMEMBER, he has been in remission since the eighth day of the diagnosis and the cancer has never been in his CNS. Our doctor who performed the procedures said the marrow came out easily, which is generally a good sign, and the spinal fluid looked clear. Thank God! We’ll have the results on Monday.
We took a trip to Fuddrucker’s (restaurant) today after the procedures as Nicholas has been asking to go there for quite some time now. We had one of his best buddies, Joey Jordan, join us. They played air hockey and a few other arcade games. They were not too interested in the food—too many fun distractions. Nicholas’ big brothers Chris and Matt joined us. Brother Tim got to go to the snow with some family friends so he wasn’t able to join us. Joey came to the house for a few hours for a play date with Nicholas—they fight like brothers, it’s too cute! When someone knocked at the door they both yelled, “don’t answer it”, thinking it was Joey’s parents coming to pick him up.
We are looking forward to a fun filled weekend and a special Easter Sunday. Happy Easter to all! Enjoy!
Note: Nicholas' March 24 pre-school graduation pictures are in the "Days 101-125 and Pre-School Graduation" album under the Links heading below.
"My doctors/nurses album": http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2
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Thursday, March 24, 2005 11:38 PM CST
(Please see new photos "Day 101-125 and Pre-school Graduation" under Links below.)
I can’t believe I’m graduating from pre-school today. Hi everyone, today I graduated from pre-school and had a lot of fun seeing my friends, teachers, and the people in the office.
–Nicholas
Today was a great day for Nicholas. He enjoyed putting on his tie and going to school for his graduation. Our Montessori school is simply incredible. They, like our family, friends, and employers have been everything and more a parent could hope for if they had to face such as devastating experience such as ours now. Nicholas’ teachers, Ms. Shirley & Ms. Jessica, and the school administration arranged a heart-felt graduation just for Nicholas because he is scheduled to be in the hospital during their regular June ceremony.
Nicholas heard songs, cheers, and praise. He received his pre-school diploma along with a memory book that includes photos and personal statements from his classmates, teachers, and school administrators. It was the “red carpet” treatment coupled with an atmosphere full of the joy that kids generate. As we were leaving, the toddler age 2 class was waving to Nicholas and as we drove off Nicholas said, “Bye little kids.”
Our hospital appointments today went smoothly and without any difficulty. However, understandably Nicholas is getting tired of so many tests and different pieces of equipment. And guess what, at times he adapts to them so well that he has fun with them and does not want to stop. For example, during the kidney test, he got so comfortable during the 9-minute test that he wanted to finish watching the movie that was playing. And during the pulmonary test, he wanted to keep breathing deeply and blowing out so he can see the dramatic graphic lines he was creating.
Nicholas blood counts are still good and we had a great evening.
Again, thanks everyone for all that you do directly and in-directly for us.
My doctors/nurses album: http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2
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Wednesday, March 23, 2005 3:26 AM CST
Hello everyone, the past few days have been uneventful medically (just the way we like it). Chris came home from UC Santa Cruz for his spring break so Nicholas has been keeping him occupied showing him all his new moves on his Spider-Man PS2 game. We had a nice trip to the reservoir on Monday to meet with several of Lamont’s work friends. They spent time with Nicholas and brought some great things for the upcoming hospital stay. Thanks everyone! We also visited Nicholas’ preschool classroom and saw all his friends. Although most of them were sleeping, it was nice seeing his classroom, Ms. Shirley, and a few of the older kids that don’t nap. Amanda, one of his classmates, gave him a little homework to work on—thanks Amanda.
Nicholas’ ability to fight bacteria and viruses is strong (blood counts are up) thanks to G-CSF shots we gave him following chemotherapy that reduces his ability to do so. He’s happy that his numbers came up so quickly so he doesn’t have to receive any more shots! Mommy and daddy are also happy about it, as it’s stressful on all of us!
We have a few upcoming doctor appointments at Children’s Hospital in Oakland on Thursday and Friday that are part of the pre-bone marrow transplant preparation. Thursday we go for Pulmonary Function testing and a kidney test. On Friday we have a lumbar puncture and a bone marrow biopsy, to make sure he’s still in remission.
Only 8 days to go until we’re admitted to start the fractionated-radiation (first time radiation will be part of his regimen—it’s an important approach toward curing Nicholas relative to the hypodiploid discovery) and chemotherapy conditioning prior to the bone marrow transplant that’s scheduled for April 7th. Please continue with all your prayers, they certainly do help!
And thanks for all the helpful guestbook messages…we all really enjoy reading them and appreciate the uplift to our spirits that they provide along the way! And it’s great interaction for Nicholas as we read and reflect on your messages.
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Sunday, March 20, 2005 2:44 AM CST
NOVEMBER 19, 2004 to MARCH 19, 2005
120 days have gone by since the diagnosis. Nicholas has clearly demonstrated that he is the strongest “person” we know. He has sustained his energy, enthusiasm, and joy. And he has more than tolerated the chemotherapy—what an inspiration.
Below is a summary of the first 120 days.
IN HOSPITAL TREATMENT & IMPORTANT NOTES
Induction: 11/22/14 to 12/7/04
Note—11/29/04, In remission as of the eighth day
Note—12/21/04, Considered a “rapid early responder” based on results of bone marrow samples.
Note—12/27/04, DNA Index results and Cytogenetics results reported to us. Along with the original diagnosis of “High Risk” B-Precursor Acute Lymphoblastic Leukemia, now the diagnosis included Hypodiploid and Nicholas was placed as “Very High Risk.” Performing a bone marrow transplant is now considered the best treatment option.
Consolidation Block 1: 12/31/04 to 1/5/05
Consolidation Block 2: 1/20/05 to 1/24/05
Re-Induction Block 1: 2/16/05 to 2/20/05
Note—3/1/05, Informed analysis of 2 potential donors reveal a 6 of 6 match
Note—3/4/05, Informed Nicholas will be admitted into Stanford-Lucile Packard Children's Hospital on 3/31/05 to begin conditioning chemotherapy for the bone marrow transplant, and the bone marrow transplant is scheduled for 4/7/05. We are so grateful that a donor was identified amazingly fast.
Note—3/13/05, First fever since the leukemia diagnosis. Nicholas is indeed a strong “person.”
Note—3/16/05, Informed the donor is actually an 8 of 8 match. This is great!
HOLIDAYS
Thanksgiving: At Children’s Hospital in Oakland
Christmas: At home
New Years Day: At Children’s Hospital in Oakland
BIRTHDAYS
Nicholas 5th birthday on 1/27/05: At home
Dad’s birthday: At Children’s Hospital in Oakland
NICHOLAS’ FAVORITE SAYINGS IN THE HOSPITAL
1) “Dada dada mama, dada dada mama, dada dada mama.”—11/19/04 when the first IV was inserted into Nicholas.
2) “What does it smell like?”—When having to take medicines by mouth.
3) “Boo, did I scare you?”—When going into the operating room, waking up in the operating room, and various times with the nurses and doctors.
4) “What’s your name, what’s your whole name?”—To just about everyone who came into his room. And he remembered their first and last names.
5) “Hi everybody, I’m home!”—12/7/04 out loud while standing in driveway when arriving home for the first time.
6) “Can I tell you one thing first?”—When negotiating for time during administration of medicines.
7) “Thank you God for making me strong to take my shots!”—When occasionally having to take G-CSF shots in alternating arms for several consecutive nights at home.
8) “What are you going to whack next?”—When a doctor was checking his reflexes and then asked Nicholas to roll over.
9) “Mom, tell Jesus thank you for giving medicine so I could go boo-boo.” Then after Sheila prayed, Nicholas asked, “What did He say?” (Nicholas had been constipated from one of the medicines.)
10) “Do you want a piece of me?”—To just about everyone, including mom and dad, when having fun or being a little feisty.
LINKS
The links on the Home Page take you to photo albums. An overview of each album is then provided along with captions below pictures to collectively provide a special view of Nicholas.
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Saturday, March 19, 2005 10:00 PM CST
HOW IT BEGAN
NOVEMBER 17, 2004:
Nicholas and dad was at a Golden State Warriors basketball game (Nicholas mostly enjoyed their mascot, Thunder, and the acrobatics Thunder and his acrobats performed throughout the game). That night at home Nicholas said his wrist was sore, although there were no physical signs of injury at all.
NOVEMBER 18, 2004:
Nicholas' Montessori school was asked to pay extra attention to his wrist. Still, no physical signs of injury.
NOVEMBER 19, 2004:
Mom scheduled an appointment with our pedetrician to check out Nicholas' wrist. It was late in the day on this Friday, so after examining and not finding any clear reasoning for Nicholas complaint of soreness, our pedetrician directed us to the emergency room at Children's Hospital in Oakland, CA for a series of blood tests.
We decided that we would go to Fenton's Ice Creamery, for a tasty start to our weekend, after the emergency room visit. While the blood lab work was being completed, mom and dad were playing and reading with/to Nicholas. (Nicholas and mom love to read.)
A couple of hours later we were DEVASTATED by the lab results revealing that Nicholas had leukemia. He had 88,000 white blood cells (normal for Nicholas would have been 5-10,000.)
NICHOLAS' RAYS OF SUNSHINE CAME THROUGH EVEN DURING THIS DEVASTATING MOMENT--as mom and dad cling to Nicholas and with every emotion swirling, all attempts of focus gave way to crying for mom and dad tightly holding on--Nicholas reaches to mom, touches her, and says "don't worry about me, I'll be alright." Nicholas was admitted into Children's Hospital in Oakland.
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Friday, March 18, 2005 9:13 PM CST
This page is just now being created. Please see the links and hospital information below--and check back for overall information & updates.
