Tuesday, May 30, 2006 10:28 PM CDT
***
Thank you for your reflections and sharing on the love you experienced and experience with our sweet Nicholas. As this week unfolds, our focus is on our Nicholas that is now an angel to us all. For now, this is where our heart has landed and soon we will share our reflections on this CaringBridge site.
***
JOIN US
We hope that all of you can join us for all or parts of Nicholas’ services celebrating his life…sharing the love of God and memories as a tribute to Nicholas that will forever live in the hearts and souls of so many of us:
THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311
Private: 4 to 5:00 pm
Public: 5 to 7:00 pm
FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800
11:00 am to 12:30 pm
FRIDAY, JUNE 2, 2006
Interment Service
Oakmont Memorial Park
(Address above)
1:00 pm
FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)
2 to 5:00 pm
IN LIEU OF FLOWERS
In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. The Nicholas Colby Fund is in memory of our beautiful son, Nicholas, who will continue to vibrantly live in all of our lives. More information about the Nicholas Colby Fund will soon be provided; meanwhile donations may be made to:
Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228
CELEBRATION OF NICHOLAS’ LIFE
Nicholas, our little sunshine continues to warm our hearts with his strength remaining as a source of strength in so many of us; his energy still serving as the source of energy to drive change; and his enthusiasm, joy, & endless passion for caring about others as the lens we look through cherishing his words, actions, and the flavor of his love.
So as we try to understand why our son, Nicholas, is no longer physically here, we are realizing that his “love” and teachings—through his six years—will never leave us void although painfully we miss him so dearly. We have always talked and took action toward trusting and believing in God’s words…His promise to protect, shield, guide, provide, and love Nicholas.
So as we trust and believe, we are considering God’s promises as perfectly performed in the way that God needs Nicholas, His son too. What Nicholas has done and is doing really is God’s work as experienced through the testimonies of all of you, although painfully we miss him so dearly.
We hurt so much wanting to make sure Nicholas is in a beautifully lit place, warm, comforted, full of joy, and full of love. So as hard as it is missing our little sunshine, we are trusting and believing that God is delivering His promises to Nicholas and will deliver His promises to us as well. Still…”God, who we need right now is You!”
"And Nicholas,
-We hold you just the way you like...
-We pat you just the way you like...
-We rock you just the way you like...
-We love looking at you just the way we like...
-We love listening to you just the way we like...
-We love touching you just the way we like...
-We love the flavor of your love and its aroma that is still in our lives...
-We love the flavor of your love that we still taste in every part of our lives...
-And Nicholas, because of you, loving you in every way instantly evokes the radiant love of God flowing within and around your spirit illuminating our lives so deeply that although we do not have a dark place in our bodies or minds—because of God, because of you—we so dearly miss the physical touch of your sunshine in so many ways...and then we feel you in more than so many ways...thank you, son, for being our son and loving us in every single way!"
SHARING LOVE
Please continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas…love generating love!
___________________________
Saturday, May 27, 2006 11:59 PM CDT
CELEBRATION OF NICHOLAS’ LIFE
Nicholas, our little sunshine continues to warm our hearts with his strength remaining as a source of strength in so many of us; his energy still serving as the source of energy to drive change; and his enthusiasm, joy, & endless passion for caring about others as the lens we look through cherishing his words, actions, and the flavor of his love.
So as we try to understand why our son, Nicholas, is no longer physically here, we are realizing that his “love” and teachings—through his six years—will never leave us void although painfully we miss him so dearly. We have always talked and took action toward trusting and believing in God’s words…His promise to protect, shield, guide, provide, and love Nicholas.
So as we trust and believe, we are considering God’s promises as perfectly performed in the way that God needs Nicholas, His son too. What Nicholas has done and is doing really is God’s work as experienced through the testimonies of all of you, although painfully we miss him so dearly.
We hurt so much wanting to make sure Nicholas is in a beautifully lit place, warm, comforted, full of joy, and full of love. So as hard as it is missing our little sunshine, we are trusting and believing that God is delivering His promises to Nicholas and will deliver His promises to us as well. Still…”God, who we need right now is You!”
"And Nicholas,
-We hold you just the way you like...
-We pat you just the way you like...
-We rock you just the way you like...
-We love looking at you just the way we like...
-We love listening to you just the way we like...
-We love touching you just the way we like...
-We love the flavor of your love and its aroma that is still in our lives...
-We love the flavor of your love that we still taste in every part of our lives...
-And Nicholas, because of you, loving you in every way instantly evokes the radiant love of God flowing within and around your spirit illuminating our lives so deeply that although we do not have a dark place in our bodies or minds—because of God, because of you—we so dearly miss the physical touch of your sunshine in so many ways...and then we feel you in more than so many ways...thank you, son, for being our son and loving us in every single way!"
JOIN US
We hope that all of you can join us for all or parts of Nicholas’ services celebrating his life…sharing the love of God and memories as a tribute to Nicholas that will forever live in the hearts and souls of so many of us:
THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311
Private: 4 to 5:00 pm
Public: 5 to 7:00 pm
FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800
11:00 am to 12:30 pm
FRIDAY, JUNE 2, 2006
Internment Service
Oakmont Memorial Park
(Address above)
1:00 pm
FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)
2 to 5:00 pm
In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. The Nicholas Colby Fund is in memory of our beautiful son, Nicholas Colby Gilbert, who will continue to vibrantly live in all of our lives. More information about the Nicholas Colby Fund will soon be provided; meanwhile Tax-Deductible Donations May Be Made To:
Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228
SHARING LOVE
Please continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas…love generating love!
Friday, May 26, 2006 11:59 PM CDT
CELEBRATION OF NICHOLAS' LIFE AND LOVE THAT "IS" WITH US, ALWAYS
Nicholas Colby Gilbert continues to vibrantly live in all of our lives and there is so much more to share of Nicholas in so many days, weeks, months, and years ahead. (All meaning your life as well; and we are so thankful it includes all of you as all of you mean so much to Nicholas, mom & dad, and our other three boys.)
Final details of Nicholas' memorial service, internment service, and celebration of life should be posted by this coming Sunday (May 28), and here is the brief information:
THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311
Private: 4 to 5:00 pm
Public: 5 to 7:00 pm
FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800
11:00 am to 12:30 pm
FRIDAY, JUNE 2, 2006
Internment Service
Oakmont Memorial Park
(Address above)
1:00 pm
FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)
2 to 5:00 pm
In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks, lovingly providing for children. At the end of this journal is additional information about this fund, including the address for your donations.
NICHOLAS ON MAY 25, 2006
There is so much of Nicholas to share and there is so much love filling our hearts fighting the piercing pain throughout every part of our bodies and the deepest parts of our being. Including Nicholas' last day with us all in body, the love from Nicholas and the love from so many (seemingly representing everyone near and far), there are stories of love filling our hearts and minds--we will soon share them all.
Right now we want to share a piece of Nicholas' last physical day with us all. It is a moment with family and friends. Imagine, everyone from everywhere who helped to welcome Nicholas back to California shortly after 12:45 am on May 25, 2006. His brothers, grandparents, uncles & aunts, cousins, neighbors, playmates & their parents, teacher, friends he met along this journey, and amazingly his doctors, nurses, & other hospital staff from all three hospitals that have been part of Nicholas' life. Yes, around 1:15 in the morning they (you) were there! And yes, throughout the rest of the early hours and throughout the day up to 12:50 pm on May 25, 2006, they (you) were there for Nicholas.
The moment that we will share is the reading of a book, "The Next Place" by Warren Hanson, that was given to Nicholas on May 24, 2006 by his doctor (Dr. Gore) at The Children's Hospital-Denver while in the Intensive Care Unit (ICU) as we prepared to be flown home to California. Dr. Gore and all of the nurses who had been around Nicholas during our stay in Denver stayed with Nicholas and mom & dad from the time we entered the Emergency Room at 1:30 am on May 24, to 9:45 pm on May 24 when we left for California. The reading of the book was with everyone from everywhere present in Nicholas' ICU room:
"The Next Place
The Next Place is an inspirational journey of light and hope to a place where earthly hurts are left behind. An uncomplicated journey of awe and wonder to a destination without barriers.
Lose yourself in the uplifting sense of comfort and serenity. Embrace the joyful spirit of oneness. Then pour yourself into the lives of those you love.
The Next Place is, above all, a celebration of life. Hear the music. Feel the warmth. And be carried away along life's everlasting flight.
The next place that I go will be as peaceful and familiar as a sleepy summer Sunday and a sweet, untroubled mind.
And yet...it won't be anything like any place I've ever been...or seen...or even dreamed of in the place I leave behind.
I won't know where I'm going, and I won't know where I've been as I tumble through the always and look back toward the when.
I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.
I won't remember getting there. Somehow I'll just arrive. But I'll know that I belong there and will feel much more alive than I have ever felt before. I will be absolutely free of the things that I held onto that were holding onto me.
The next place that I go will be so quiet and so still. That the whispered song of sweet belongings will rise up to fill the listening sky with joyful silence, and with unheard harmonies of music made by no one playing, like a hush upon a breeze.
There will be no room for darkness in that place of living light, where an ever-drawing morning pushes back the dying night. The very air will fill with brilliance, as the brightly shining sun. And the moon and half a million stars are married into one.
The next place that I go won't really be a place at all. There won't be any seasons--winter, summer, spring or fall--Nor a Monday, Nor a Friday, Nor December, Nor July. And the seconds will be standing still...while hours hurry by.
I will not be a boy or girl, a woman or a man. I'll simply be just, simply, me. No worse or better than. My skin will not be dark or light. I won't be fat or tall. The body I once lived in won't be part of me at all.
I will finally be perfect. I will be without a flaw. I will never make one more mistake, or break the smallest law.
And the me that was impatient, or was angry or unkind, will simply be a memory. The me I left behind.
I will travel empty-handed. There is not a single thing I have collected in my life that I would ever want to bring except the love of those who loved me, and the warmth of those who cared. The happiness and memories and magic that we shared.
Though I will know the joy of solitude...I'll never be alone. I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one, and the circle of our spirits will shine brighter than the sun.
I will cherish all the friendship I was fortunate to find, all the love and all the laughter in the place I leave behind.
All these good things will go with me. They will make my spirit glow. And that light will shine forever in the next place that I go."
THE JOY THAT NONE CAN TAKE AWAY...
Below are words we have spoken about often, that have helped us along Nicholas' journey. And it is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas--AND praying and believing God's love for all of these kids is all that all of these kids need and have.
"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."
"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."
***PLEASE STAY WITH NICHOLAS ON THIS CARINGBRIDGE SITE***
Please stay with Nicholas, mom & dad, and our other three boys Christopher, Timothy, and Matthew as there is so much more of Nicholas to share. More than we could imagine as his love for God, mom & dad, his brothers, and all of you are really so much more than we could ever imagine.
Nicholas always and forever will illuminate with rays of sunshine that warms our and your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others will amazingly embrace the world and heaven because of God and all of you:
-Can you see the love from Nicholas' beautiful eyes?
-Do you taste the caring flavor evoked from Nicholas' radiant smile?
-Can you feel the warmth of his touch?
-Do you hear the love, gentle, sharing, and fun words invoked from his mouth?
-Can you and do you get a scent of Nicholas and everything about him?
MEMORIES
On this CaringBridge site we have read some beautiful memories of your experiences with Nicholas captured on the GuestBook. PLEASE continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas. Nicholas will read and feel the love generating love!
IN MEMORY OF NICHOLAS COLBY GILBERT...
In memory of our (and your) Nicholas Colby Gilbert who will continue to vibrantly live in all of our lives, a non-profit Nicholas Colby Fund has been established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks, lovingly providing for children. More information about the Nicholas Colby Fund will soon be provided; meanwhile Tax-Deductible Donations May Be Made To:
Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228
___________________________
Thursday, May 25, 2006 11:58 PM CDT
A short note from Nicholas’ big brothers…
Today was a good day and a bad day…
Bad, in that our brother, your friend and this world’s little angel is no longer with us in body, but good in that we can honestly say that he is so much happier now and in peace, forever with us in spirit, thought and memory.
By my watch, at 12:47 PM our little warrior to some and superhero to others passed away peacefully this afternoon at LPCH in the arms of family and friends, with much comfort and love surrounding him. Being with him last night and today there was definitely a sense of calmness within and around Nicholas which was great to see. After hours of dialogue with Nicholas and comforting words by many we hesitantly left LPCH and made it back home in Lafayette around 7 PM. We then sat together and watched a few slideshows of our brother in a small, but soothing celebration of his life. Naturally, we are all exhausted and worn down by today’s events, as well as the past months dating back to November 2004 when our journey first began. Our parents are both deservingly getting some rest now together in the family room and we are preparing dinner for us all. We decided to order out for Nicholas’ favorite – Japanese from his favorite restaurant – Blue Gingko here in Lafayette. When they wake up we will all enjoy a family dinner together, our parents, us and most importantly Nicholas Colby Gilbert, sitting at the head of table with his favorite shrimp tempura on his plate.
We’re sure our parents will sit down together and write their version of today’s journal, but until then we wanted to share this information with you in our own words. We all love Nicholas very much and look forward to the day we can see him again. Until then, we know he is sitting up in heaven smiling down on us all, “normal again,” (without his Broviac) free of the pain and medicines.
***NOTE – A dear family friend of ours has set up a foundation in honor of Nicholas, exact details of it will follow and be posted here in the coming days***
Sincerely,
Christopher, Timothy, Matthew (& Jordan our family friend and brother in every sense)
___________________________
Thursday, May 25, 2006 8:26 AM CDT
HOME (CALIFORNIA)
Yesterday, Wednesday, afternoon in the Pediatric Intensive Care Unit at TCH-Denver, Nicholas had continuous trouble breathing and maintaining a desired oxygen level. He had to be intabated (tube down his throat) and placed on a ventilator. At that time...we also made a decision to have Nicholas home...so arrangements were made to be transported via "Air Ambulance" once he was stabalized from the intabation.
Wednesday night we left Denver around 9:45 and we landed safely in California around 12:45am PST. By the way, as we entered California Nicholas' blood pressure and oxygen level were better-the flight nurse and respiratory therapist said they guess Nicholas certainly wanted to be home!
Following the medical-uneventful flight (good), literally as Nicholas was entering his Pediatric Intensive Care Unit room at Stanford-LPCH his pulse and blood pressure were lost. The medical team got his pulse and BP back without having to shock him. Nicholas is relatively stable right now and amazingly is breathing a tiny bit on his own. And once again, we are reminded to "be still and know that I am God." Nicholas, as you have witnessed, is extraordinary and we know God absolutely loves him.
Note: Nicholas continues to be blessed in so many ways. What is so embedded in our hearts is love for the medical staff at CHO and LPCH, and like CHO and LPCH, also love for the TCH-Denver staff-at all levels-for who they are and how they do what they do. We thank them for "showing up" in such a loving, caring, and joyful way in the face of awful challenges patients and their parents confront. And then we again are reminded to "be still and know that I am God." God's omnipotence, omniscience, and omnipresense is at work so Nicholas is loved so deeply, completely, and perfectly-today, tomorrow, and always. And, Nicholas love and joy is not done...he walks with God on this earth!
___________________________
Wednesday, May 24, 2006 9:23 AM CDT
UPDATE #1
EARLY WEDNESDAY JOURNAL BECAUSE ER AND ICU
Following posting of last night's journal (Tuesday), at 1:30 this morning we took Nicholas to the Emergency Room (ER) where his doctor met us after talking with her on the phone. During a regular blood pressure check our machine was unable to detect a blood pressure on Nicholas (it did on mom) and he complained of severe pain in his stomach and back.
While in the ER his blood pressure and oxygen level were running too low and his stomach was distended. Stomach and chest X-rays were taken and air was determined to be leaking somewhere. Nicholas was transported to the Intensive Care Unit (ICU) to ensure high-level of follow up and monitoring. His blood pressure and oxygen level have come up (good) and they are working toward them being stable.
PLEASANT SURPRISES IN THE ICU
Nicholas, thankfully "being Nicholas" surprised the staff a couple of times by the way he navigated some of the troubled moments...
While he is still in the ICU, we pray & love God continually, trusting and believing His words...
___________________________
Tuesday, May 23, 2006 11:16 PM CDT
NICHOLAS AND BABIES
You know Nicholas and babies...this morning in the clinic it was like experiencing two stars shinning and sparkling as Nicholas and Ethan (a 6-month old undergoing treatment) played in Nicholas' room. They seemed to bring out more than joy in each other as their play generated the sensation of "ahh" in the hearts of the staff and others. PICTURES when we return (in 2 weeks).
VISIT TO THE U.S. MINT-DENVER
Thanks to a relationship the founders of Brent's Place has with the U.S. Mint-Denver, Nicholas really enjoyed a private tour of the Mint today. The United States Mint police, from the Chief to the to the officer greeting us at the entrance treated Nicholas as the prince he is (although Nicholas tells us he is the king when there are certain things being requested). You have read and seen that Nicholas loves collecting (and sharing) money so this tour illuminated his heart creating joy for all around him. We could not have asked for the experience to be any different or better and the Chief contributed significantly to the overall experience-amazing people doing amazing things even when there is no public forum. Nicholas, and mom & dad, had a great time!
AND THE MEDICAL NEWS ON THIS PAST FRIDAY'S BMA
Although we, too, certainly want to know the medical news, we want to talk about experiences of love first and foremost because these are things that really matter most. So like the experiences this morning with baby Ethan and the visit at the Mint, our experiences of love, caring, and sharing are focal points of our lives. Amazingly, these types of experiences are like a circle-of-love: caring, giving, sharing, experiencing, and rejoicing. And with these types of experiences you crave more so giving more repeats the circle-of-love...
Fridays' bone marrow aspirate (BMA) results were received today and the interpretation is that there has been a little bit of progress from May 9. However, the progress was not medically significant in terms of percentage of blasts. Remember, the May 9 analysis revealed 90percent blasts with 40percent viable; and this past Friday's number is 82percent with the percent viable not reported although some percentage are not viable. Mapping back to what we stated in yesterday's journal, now that we added the steroid, Decadron, could this be the medical twist needed and could the results lead to better medical options for others?
So while we do want to understand the numbers, we are not holding out for the numbers to indicate Nicholas' future! Nicholas is in God's hands and His hands are not governed by numbers-they are governed by Love. We are sure you have seen (through Nicholas' journey as well as others) love manifest amazing realizations-miracles in many regards and God being God although we wonder why things unfold as they do. And, we trust and believe.
WHAT IS NEXT
Specific lab work sometime toward the end of next week or before we come home to California June 6. And those results will influence decisions for next steps with the Forodesine and any other medical options. Discussions are underway with BioCryst to allow Forodesine to be administered in California at either Children's Hospital-Oakland (CHO) or Stanford-LPCH so we would not have to stay away from home beyond this 6-week Forodesine induction. (CHO preferred because it is much closer to our home and considering the every-weekday treatment...)
May 23, 2006 Blood Counts:
WBC: 0.5
HGB: 11.1
PLTs: 19 - Platelets transfusion today after this level was reported.
ANC: NA
___________________________
Monday, May 22, 2006 11:59 PM CDT
FRIDAY'S BONE MARROW ASPIRATE RESULTS NOT KNOWN YET (Some Information From Scientists)
A broken machine at TCH-Denver has delayed results of this past Friday's bone marrow aspirate.
The lab work is now being performed by The University of Colorado's main hospital's lab. While the results now should be known to us tomorrow, samples from Friday's procedures that were sent "overnight" to BioCryst's scientists give us some information now.
The scientists' analysis reveals that the blasts are sensitive to the drug-Forodesine (good), however not as sensitive as it is in other patients. So it is having a favorable impact, we just will not know percentages until the results stated above. And, now that we added the steroid, Decadron, could this be the medical twist needed? (And could these results lead to better medical options for others?) We are very anxious and we remind ourselves to keep Nicholas in God's hands-trusting and believing His words.
NOTE: Sporadically, Nicholas' emotions are running high and this is a side effect of the steroid. Here too, we pray for God's shielding of Nicholas... We expect the steroid to be used for about two weeks (and today we started tapering the dose down).
BY THE WAY
-The oxygen that we started providing Nicholas around the clock last week has not been needed since Friday night-yeah.
-Nicholas had a quiet day at the clinic and a fun, engaging evening at the "Foundation House" at Brent's Place. He was playing, eating (better than he has in several weeks), and sociable the way we all remember Nicholas to be.
May 22, 2006 Blood Counts:
WBC: 1.6
HGB: 7.7 - Red Blood Cells transfusion today after this level was reported.
PLTs: 15 - Platelets transfusion today after this level was reported.
ANC: 80
___________________________
Sunday, May 21, 2006 11:59 PM CDT
WHAT NICHOLAS SAID IN THE MIDDLE OF THE NIGHT (Saturday/Sunday)
"Mom, you do a good job being a mama-there is no doubt about it!"
ANOTHER QUIET, UNEVENTFUL MEDICAL DAY (Good)
Quiet day and nice moments, although short, on the balcony bench "taking in" the warm, gentle breeze; evening sky; and listening to the sounds of Denver (home-away-from-home). We are so grateful for the constant events of God's love and the outcomes of His words revealing truth over anything contrary to them. While uneventful medically, that in itself is amazingly eventful as God's love keeps Nicholas safe on this roller coaster journey.
TOMORROW (Monday)
Tomorrow we will learn the medical outcome of Friday's bone marrow aspirate-praying for the manifestation of God's words to be fully realized now. While it is not "our" will that will be done, God's will for His child is good so we trust and believe recognizing the good that we continually see.
May 21, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, May 20, 2006 11:59 PM CDT
QUIET DAY, SOOTHING EVENING
Nicholas and mom & dad had a quiet morning and afternoon-and it was uneventful medically which was so nice. The afternoon was spent lounging, playing silly games (funny faces and made-up hand games while we were lounging), talking, and praying.
We were given tickets to tonight's Colorado Rockies baseball game; however, at the time to go Nicholas wanted to go for a walk instead. We found some young people walking near Brent's Place and gave the tickets to them-they were naturally surprised and thankful.
Off we went on our walk enjoying the warm evening weather and refreshingly beautiful Western sky. The sky was a vibrant blue with scattered clouds as the sun was going down toward the Rocky Mountains. As the sun momentarily went behind some clouds, the blue sky and clouds took on an amazing majestic appearance providing a vibrant blue backdrop with a blend of yellow/pink/lavendar/orange and other colors seemingly glowing at the clouds edges. Along with the cascading mountain ranges at the horizon, we were in "awh" of God's great work. Just as awesome and inspiring is God's creation-Nicholas. Nicholas is...and we are so thankful and loving of this great work!
Nicholas had a good day. We thankfully pray for an even better Sunday, loving, living, trusting, and believing God's words to fulfill their promises-because truth is divinely real and will continually be what it is: omnipotent, omniscient, and omnipresent.
May 20, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, May 19, 2006 11:59 PM CDT
LAST NIGHT (Thursday) WAS ANOTHER GOOD NIGHT AND TODAY (Friday) WAS FULL WITH PROCEDURES
-Thursday night was peaceful and we all slept fairly well.
-Friday morning we were at TCH-Denver's clinic for the every-weekday Forodesine treatment.
-Then Nicholas was in the operating room for the bone marrow aspirate. Analysis should be complete by Sunday so we will either receive the results on Sunday or Monday.
-Remember, last week the medical community just learned that on this experimental treatment, adding the steroid-Decadron-has shown to get one of two patients into remission. Today, Nicholas started receiving Decadron and will over the weekend. Next week's lab results will be a factor determining if Nicholas will receive it for about one week before tapering it off.
-Tomorrow and Sunday we will administer the oral form of Forodesine. We are doing this because the last couple of weeks Nicholas has experienced tougher times during mid-week. The weekend oral dose is an addition for some on this experimental protocol; however, no significant benefits have been realized (to date). Recognizing the mid-week tougher times it is the doctor's hope the weekend dose will provide a benefit to Nicholas.
-Remember the monthly IVIG (immune booster) Nicholas appeared to have a reaction to on May 5? Today they tried to administer it again and he appeared to have another reaction to it so we will not give this to him until we return to California.
-The pre-treatments and sedation for all the procedures today also resulted in Nicholas resting or sleeping just about the whole day & night.
-We are so fortunate to continually have nurses/doctors that truly engage and "care" about Nicholas in ways that go well beyond the medical role. In fact, the engaging and caring is equally extended to mom & dad.
-And we continually are amazed with the love and support from long-time and new friends. Thank you so much for the cards and packages Nicholas is blessed with (through you). Your endurance, continually being with us in the ways that you are touch our hearts and amazingly helps make things easier in a variety of ways. We are blessed and so grateful to each and EVERY ONE OF YOU!
-Love leads and follows Nicholas in amazing ways. Note: while it is very warm in Denver these days, we heard today that it was raining back home in Lafayette. And this evening we received a telephone call about a rainbow over Lafayette. Not one, two rainbows.
May 19, 2006 Blood Counts:
WBC: 1.2
HGB: 8.7
PLTs: 44
ANC: 12
___________________________
Thursday, May 18, 2006 11:59 PM CDT
LAST NIGHT WAS A GOOD NIGHT...the best in 19 nights! No fevers, no pain, no vomitting, and no sleepless night. SIDE NOTE: During the night when the oxygen mask was too close-accordingly to Nicholas-he would wake up and say, "Way too close!"
THIS MORNING WAS VERY GOOD...Nicholas woke up saying he was hungry which was the first time he "wanted" to eat breakfast in a couple of weeks. He was up (not wanting to lay down as the case has been lately), he was energetic (not wanting to just be "patted"), he was mentally alert (not wanting to just concentrate on breathing and wanting to rest), and engaging with his surroundings (not just seemingly concentrating internally).
TODAY IS A NEW DAY...and love is love-truly. Love is lighting up our lives and Nicholas' path. In previous journals we talked about our love and appreciation for God's constant love as well as our recognition of His love regardless of what "numbers" are reported or what we hear medically. Our love, too, is constant even when things do not appear the way we want. Thankfully, we are experiencing and living amazing testaments along the way-when it appears to be dark, our hearts our warmed and souls glowing with God's illuminating love. Can you sense the lighted path that we are experiencing, again? God has always been a very present help in seemingly times of trouble.
NICHOLAS HAS THE DOCTORS "SCRATCHING THEIR HEADS" IN A GOOD WAY...as the clinical evaluations and medical condition are baffling to them. One moment things look concerning and then things look good; things just do not add up to them which was similarily the case at LPCH. We just focus on God and adding up his omnipotence, omniscience, and omnipresence by virtue of the truth calms us knowing God is in control so nothing should we fear.
TODAY'S ECHO-CARDIOGRAM...reveals no pulminary hypertension. So the fluid revealed on yesterday's CT scan is not because of poor heart function. The heart's ventricles are moving properly, valves doing what they are suppose to be doing, and no excess pressure. So, if we want to use the oxygen it can still be given for comfort, however, it is not needed for any compensation reasons. Yeh! So what is the reason for the fluid build up? No answer yet, however, we continually trust and believe God's amazing work for so many beautiful reasons we have witnessed.
LONG-LASTING INTERACTION...with Betsy (Housing and Special Events Coordinator at Brent's Place) who visited Nicholas in our apartment (home-away-from-home). And Nicholas was...well, you know what he was doing..."playing and having fun." Amazingly, his energy & enthusiasm are dramatically up and for long periods of time.
TOMORROW (Friday)...Nicholas will be in the operating room late morning for the fourth-week bone marrow aspirate (BMA). Also, he will receive a 4-hour IVIG (immune booster) infusion in the clinic. While this BMA is a very, very important medical step, "Oh Father, we rejoice recognizing Your love, shielding, protecting, and guiding Nicholas' path. We rejoice praying and behaving for You, recognizing that our lives are a testament of all that Your love always deliver.
WE ARE LOOKING UP...and forward because...well, you know what you have read, heard, seen, experienced, and are part of along this journey...
May 18, 2006 Blood Counts:
WBC: 1.4
HGB: 9.1
PLTs: 64
ANC: 14
___________________________
Wednesday, May 17, 2006 11:59 PM CDT
ANXIETY BUILDS...and trusting & believing remains as our foundation because God is God. The many blessings along the way continue today, just some are in different ways.
Nicholas' breathing has been more laborious so a CT Scan was performed today. The good news is that there is no pneumonia or fungus. The anxiety is around hearing there is fluid around Nicholas' heart and lungs, it could be caused by leukemia. Also, the shift in altitude (Denver being one mile above sea level) could be causing pulmonary hypertension so an echo-cardiogram may be performed tomorrow to help identify intervention steps. Tonight at our home-away-from-home we began administering oxygen to ensure he receives the level needed without laborious breathing.
Because God is God, Nicholas is in the hands of love and His love is not confined to physical ideas like blood counts and oxygen levels. While this is all so hard to deal with, we are reminded that because of His love, "Be still and know that I am God." And because God is God, Nicholas is not confined to any process other than the process of love. We do believe because we-and you-have seen love shine in Nicholas along the way-and God's love is unwavering.
A SPARKLE AND GLOW...was a beautiful surprise as Nicholas got up from laying down all day and this evening to take a bath. During his bath Nicholas was Nicholas-and it was so good to see and feel. And as our evening comes to a close, Nicholas is Nicholas. Note: There was a glimmer of Nicholas' glow this afternoon in the clinic when two professional hockey players visited the clinic. At Nicholas' request because he was tired, Brad Larsen (of the Atlanta Thrashers, and formerly of the Colorado Avalanche) and Dan Hinote (of the Colorado Avalanche) were taking a picture with mom & dad. And in the picture, with Nicholas in the background, what do you think we saw on his face? Yes, Nicholas beginning a smile.
The blessings continue and tomorrow is a new day. We are so glad that God is the same yesterday, today, and tomorrow-He is the light of our lives continually illuminating Nicholas' path.
May 17, 2006 Blood Counts:
WBC: 2.6
HGB: 9.4
PLTs: 16 - Platelets transfusion after this was reported
ANC: 26
___________________________
Tuesday, May 16, 2006 11:59 PM CDT
PRAYING
Today, 81 blasts were reported in the peripheral blood. And today was the second consecutive day without a key marker (Segs, that contributes to having the ability to fight off infections-ANC) being detected in the analysis of the blood. It is concerning because of the lack of "progression" and link to leukemia. Again, we pray that what is reported in the peripheral blood...well, God is God and Nicholas is loved because of God.
This evening Nicholas received a package exuding with love; including an inspirational message that summarizes most of the journals: "Love always protects, always trusts, always hopes, always perseveres" (1 Corinthians 13:7).
These journals are becoming hard to write because of physical and mental exhaustion. And then we realize that as hard as it is, it is all about God and Nicholas, and there is no greater reason to love. With love, there are no boundaries and no limitations... God, we love you, live for you, and know that You know what Nicholas needs. And You know Nicholas wants (and he deserves) to see and feel the manifestation of Your truth-love-in simple ways that enable Nicholas to fully and completely live for You: pure and perfect in EVERYWAY.
NOTE: An early evening stroll and Nicholas' first hair cut at a salon since the diagnosis. Afterwards, his first comment was, "Do I get a lollipop?" This is a good reason for us to go, tomorrow, to Enstroms candy store we have read about in the guestbook.
May 16, 2006 Blood Counts:
WBC: 2.8
HGB: 10.1
PLTs: 22
ANC: NA - see above comments
___________________________
Monday, May 15, 2006 11:59 PM CDT
SNAPSHOT OF THIS PAST WEEKEND AND TODAY (Monday):
-A nice Mother' Day weekend created with love (we "made" it nice by not focusing on any limitations).
-Saturday: More site seeing around Denver; this time Nicholas was sort of the guide for his brothers who flew into Denver Friday night for Mother's Day and for Nicholas (and for dad too). Shopping at the outside/inside Cherry Creek Mall was a nice reminder of times at home, talking and finding ways to just be "playing and having fun." And dinner out, on an outside patio (so no mask for Nicholas). NOTE: Nicholas has received an invitation to tour the U.S. Mint here in Denver whenever he is ready (probably next week).
-Sunday: Although it was Mother's Day, all of us boys watched a little of the NBA playoffs. Actually, seeing her boys (dad too) watching basketball or playing it makes mom happy. Nicholas has not been watching very much of the NBA playoffs, maybe because the Golden State Warriors are not playing...
Fun in a park walking, talking, and playing. Nicholas enjoyed playing "tag" on a walkway that has hills/valleys and lots of curves. Nicholas especially enjoyed the speed of the game because he was "buckled up for safety" in a touring stroller (he has been too sore to walk other than very, very short distances) and dad was propelling him around the walkway following his directions-hand signals and laughter were dad's guides. Nicholas was "it" just once as he navigated the walkway and mom & his brothers without getting caught...
Being outside together was so beautiful (just being together outdoors) and the snow-capped Rocky Mountains provided a beautiful backdrop and amazing points for gazing...
And for Mother's Day dinner, we had dinner out again, on another outside patio-Cherry Creek Grill providing a sunset that rivaled Hawaii (just no water). Well, it was the warmth and relaxing time together that reminded us of Hawaii. Nicholas ordered Prime Rib just like the last time we were in Hawaii.
-This morning: Nicholas' brothers left Denver as the sun began to rise and they received a beautiful Denver send-off, the sun's beams illuminating the snow-capped Rocky Mountains.
-Today: Nicholas slept most of today receiving transfusions (below) at TCH-Denver clinic...
-Today: Doctors pulling information from Stanford-LPCH regarding Chimerism and Cytogenetics because the DNA from the donor and Nicholas is not adding up-more about "not adding up" later. Remember, Chimerism is the test that determines what cells are at work in the marrow, the donor or Nicholas'. And remember, Cytogenetics looks further into the DNA and those results were the reason Nicholas received a transplant (best medical-cure approach determined)...
-This evening: We left the clinic around 6:00 after being there all day. Nicholas had "awaken" and wanted to go to the Foundation House at Brent's Place (the main building of the apartments). Inside there was another little boy, Luis, playing with a staff member and Nicholas took the place of the that member. Luis and Nicholas had a good time and had dinner together (family night at Brent's)...
Then, Nicholas asked to go back to the park we visited yesterday. And off we went to the park with the sun getting close to setting. And off we went in Nicholas' touring stroller onto the walkway that has hills/valleys. Guess what we heard from Nicholas as we were zooming around the walkway, down, up, and around the curves? ..."Weeeee" were the sounds as he treated the ride like a roller coaster. And mom & dad, certainly, enjoyed seeing and hearing Nicholas "playing and having fun" as the sun began to set.
-This coming Friday: Next BMA.
-Perfect Timing: Nicholas' TCH-Denver doctor received special approval from BioCryst to deviate from the experimental protocol after the end of the fourth week and its BMA (this coming Friday). The deviation is administering a 3-day pulse of a steroid called Decadron. This past Thursday through Saturday his doctor was in Germany participating in a conference held by BioCryst (company that developed Forodesine Nicholas is receiving) with scientists and other lead doctors. In this conference it was first reported that in two difficult cases...receiving Forodesine, one patient went into remission with the addition of Decadron. So Decadron will be administered for 3 days starting this coming Saturday. God speed and God's time...
May 15, 2006 Blood Counts:
WBC: 1.3
HGB: 7.8 - Red Blood Cells transfusion after this was reported
PLTs: 10 - Platelets transfusion after this was reported
ANC: NA
___________________________
Friday, May 12, 2006 4:51 PM CDT
A GOOD DAY (Relatively Speaking)
Nicholas was in full swing in all aspects this morning: letting the sunshine of his spirit shine. In fact, he had the best energetic and vibrant morning since we have been in Denver.
The day is going well and Nicholas is very excited about seeing his brothers tonight (and over the weekend). The boys arrive in Denver late tonight and it will be the start of a Mother's Day-Weekend for Sheila. She is naturally excited to be around her boys, and she is more excited to see Nicholas around his brothers. It will be great for dad, to be dad to all in one place.
NOTE: The peripheral blasts were down to 64 today.
MOTHER'S DAY WISH
Simply stated, however, deeply communicated, for all the mothers and those of you who share "motherly qualities" in & around your lives, Happy Mother's Day! Know that your love is powerful, needed, and wanted all the time. Even when your loved ones seem to take it for granite, your love is soft and warm-comforting and teaching always.
NO JOURNALS THIS WEEKEND!
This weekend we will not have access to update Nicholas' site; so we do not expect to be providing journals for Saturday and Sunday unless there is a dramatic change in things.
NOTE: We constantly talk about being blessed in a variety of ways, including you being in Nicholas' life the way that you are. Thank you, and thank you for being part of Nicholas' CaringBridge site.
WE WILL SEE AND HEAR FROM YOU ON MONDAY (Virtually)!
May 12, 2006 Blood Counts
WBC: 1.2
HGB: 9.9
PLTs: 16 - Platelets transfusion today after this was reported
ANC: 48
___________________________
Thursday, May 11, 2006 11:59 PM CDT
NICE DAY AND THE JOY OF NICHOLAS WAS EASILY FLOWING
From interacting with his nurse practioner's 15-month old son, Mikka, who visited TCH-clinic with his mom this morning (remember the joy and love from his interactions with his LPCH nurse's son, Satchel?)...to just "playing and having fun" with mom & dad tonight, Nicholas' joy actually provided joy to mom & dad's heart as well as the nurses at TCH. After we left TCH Nicholas said, "That baby was cute and I liked playing with him." If you remember, Nicholas has always enjoyed babies, kids, and in general just caring about others.
WHAT DOES THIS MEAN?
Today, the daily blood work results show 81percent blasts in the peripheral blood. Over the last 7 days the percentage of blasts in the peripheral blood has increased from 10, 27, 47, 45, to 81. At this time the doctors are not sure what this means. We pray that like the dead blasts in the marrow this past Monday, the blasts in the peripheral blood are dead.
We do trust and believe that divine intervention is omnipotent, omnipresence, and omniscience so the miracles of God is God just being God. Of course we pray for miraculous turning of events and in some ways, although it has been so slow in our hearts and minds, we have continually seen Nicholas overcoming so many things in his way for 538 days now. We have and will always turn to God for the turning of all things to good.
AMAZING GOD
As amazing as Nicholas' joy is to our hearts, we are reminded that, "The joy that none can take away is ours, we walk with God along the way." Because nothing has power over God, nothing contrary to God has power over Nicholas. So putting everything going on into perspective, we are more & more amazed at the manifestation of God's love and spirit enabling Nicholas' joy to be full of life and the blessings of Nicholas' life to fulfill our lives.
We do wonder why Nicholas is still having to battle all that is going on. It is so, so hard to see him fight and battle his way through it all and we continue to trust and believe that God being God will continue to lovingly provide all that Nicholas needs. It is just so hard not having what we want now! And we can only believe that as faithful as Nicholas, at age 6, and we are, God WILL provide all that we want and need-Nicholas deserves everything good and true to His word. And we pray that a new day will be provided to all these beautiful kids battling life threatening situations (any situation) to create a new day for the world toward trusting and believing...
May 11, 2006 Blood Counts
WBC: 1.5
HGB: 10.5
PLTs: 20
ANC: 60
___________________________
Wednesday, May 10, 2006 11:59 PM CDT
FINAL REPORT ON MONDAY'S BMA HAS EVEN BETTER NEWS
This afternoon Nicholas' doctor met with us regarding the final report on this past Monday's BMA. The final analysis is that of the 70-80percent blasts, a significant amount were dead cells so there were only 40percent active blasts. So relative to the 90percent blasts before we started this new treatment, down to 40percent is very good news.
NOTE: While Nicholas received pain medicine today for his legs, he had a little more energy and even had smiles to go along with all the love he feels and has.
SURPRISE PACKAGE
After we returned to our home away from home today, from the TCH-Denver clinic, Nicholas was greeted with a surprise package from parents so, so close to our journey. The Falsetti/Diffenderfer's sent Nicholas a large package that had packages within the package. For Nicholas (and mom & dad), opening the package felt like unfolding love touching our hearts again and again. What a blessing! With the packages/envelopes there was card that touched our hearts as well, as it spoke of support and love that had mom & dad smiling and knowing that we are supported. (We feel so much love and support from all of you: thoughts, prayers, guestbook entries, cards received...)
And, there was an envelope with a message shared with Nicholas: "These are red envelopes. They are a tradition in the Chinese culture usually given during Chinese New Year. The Red is a lucky color in Chinese culture and the symbols are for good fortune. I thought you might enjoy sharing them with Nicholas." We will give them to Nicholas over consecutive days, letting him know that there are so many people loving Nicholas along the way and we expect will love him forever.
SOMETHING NICHOLAS SAID TONIGHT
"Do You know where I think God's best spot is? In your heart because it is just a great spot."
May 10, 2006 Blood Counts:
WBC: 1.9
HGB: 11.6
PLTs: 36
ANC: 95
___________________________
Tuesday, May 9, 2006 11:59 PM CDT
SLEEPLESS NIGHT (Monday)
Nicholas continued to have pain in his legs throughout Monday night/Tuesday morning so we were up every 2 hours administering IV Dilaudid, praying, "patting" & rocking, and comforting him. And can you imagine: not sleeping, experiencing pain, middle of the night, and Nicholas was still so loving in asking for help. One time he said, "Mom, if I asked, would you mind getting me some IV Dilaudud?"
NOTE: If needed, another plan is in place using a Fentanyl patch that continuously releases pain medicine. Here, too, "There is no spot where God is not!"
And tonight when Nicholas was talking to one of his brother's on the phone, Nicholas calmly said, "I was in a little pain, but I'm good now."
MEDICAL RESULTS OF MONDAY'S BONE MARROW ASPIRATE AND BIOPSY
Remember, the last BMA showed 90percent leukemia and we have been looking to this experimental drug (Forodesine) to at the very least decrease the percentage at this 2-week stage of the 6 week process. And overall through God we, naturally, pray for complete and everlasting healing-whole and free from anything contrary to God's love and spirit.
The GOOD NEWS is that medically there is a reduction in the leukemia-down to 70 to 80percent. So a favorable difference is being realized; AND Nicholas deserves so, so much more! Through God Nicholas HAS infinitely more and we pray for the good that Nicholas' journey may do for others AND for the manifestation of God's truth to be revealed now in Nicholas-he so deserves it.
The Forodesine process continues here in Denver and our discussions with his doctor is ongoing as up-to-the-moment information is being secured from the pharmaceutical company (BioCryst). Our focus remains on God and Nicholas so we are keeping our actions on ensuring we are doing things "for" Nicholas and not "to" Nicholas.
NOTE: This evening we reduced the oral medicines Nicholas takes by stopping the evening dose of Cyclosprine. Remember this one used to manage/control graph-versus-host-disease (GVHD) from the BMT? This means three less pills at night. Another benefit of this experimental process and the Forodesine that Nicholas receives every weekday, is medical evidence that it also combats GVHD providing what is called graft-versus-leukemia effect (GVL). Daily, Nicholas' skin, liver function, and other things will be monitored that could be impacted. If these things are not negatively impacted, after one week we may stop administering Cyclosporine completely.
TRANSFUSIONS KEPT NICHOLAS IN CLINIC ALL DAY (Tuesday)
We were in the clinic late morning, noon, and evening receiving the every weekday Forodesine treatment and then two transfusions: Red Blood Cells and Platelets. Note: Although Nicholas received a Platelets transfusion yesterday, it was an extremeley small amount so we were not surprised to only see a slight increase in the Platelets count.
May 9, 2006 Blood Counts:
WBC: 1.1
HGB: 8.1 - Red Blood Cells transfusion today after this was reported
PLTs: 18 - Platelets transfusion today after this was reported
ANC: 55
___________________________
Monday, May 8, 2006 11:59 PM CDT
LONG, EXHAUSTING DAY for Nicholas in the TCH-Denver clinic and operating/recovery rooms for treatment and procedures to assess the bone marrow. Nicholas slept just about the entire day (and mom & dad were physically and mentally exhausted throughout the day and night).
Complete medical results of today's procedures will be known tomorrow.
Nicholas started experiencing leg pain again and we re-started administering pain medicines; however, trusting and believing that God (who we continually love and need) will continually shield and guide Nicholas because He is God and Nicholas is His creation.
THANK YOU, EVERYONE, for being how you are with us: thoughts, prayers, guestbook entries... Nicholas has really enjoyed receiving the cards sent to him, the comforting words, and the nice surprises that also make mom & dad smile.
We continually hear that Nicholas remains a significant part of conversattions at his school, mom & dad's work, the hospitals, and other places where "you" are. We do feel your love-thank you. The love and encouragement are helpful as we focus on Nicholas, who deserves all the love in the world. As do all these beautiful kids who seemingly fight this fight for all kids!
NOTE: The Hemoglobin (HGB) count below shows NA; it was unable to be determined because of Lipemia that is something to do with the fat content in the TPN, food in a bag via IV, that was started May 4. The TPN was started because Nicholas was not eating well enough the last couple of weeks and we wanted to ensure he was receiving specific levels of nutrition. His eating has improved so we will soon stop the TPN mom infuses that runs through the night.
The Hematocrit count will probably be used to determine if a Red Blood Cells transfusion is needed while the HGB count cannot be determined.
May 8, 2006 Blood Counts:
WBC: 0.8
HGB: NA (see above note)
PLTs: 11 - Platelets transfusion today after this analysis
ANC: 104
___________________________
Sunday, May 7, 2006 9:49 PM CDT
ANOTHER GOOD DAY
It has been a long time since Nicholas has been in a shopping mall. This afternoon we took him to the Cherry Creek section of Denver that has everything for every type of browser, shopper, diner, etc. Enjoying the weather strolling the outside mall and fun being in the inside mall. We went into a toy store that had an enormous variety of fun and educational toys; and then we went into the Cherry Creek Mall that is simply as good as it gets from an extravagant-mall perspective.
Nicholas said it, "Today was a great day!" And it was uneventful medically (great).
BMA TOMORROW (Monday)
Tomorrow we will be at TCH-Denver all day to begin the 3rd week of the 6th week treatment, and a bone marrow aspirate (BMA) to assess the status of the bone marrow. This is an early BMA because we want to determine, now, that these treatments are making the difference we expect. Nicholas will still have the BMA being scheduled for aproximately May 19 that is part of the experimental protocol.
Our thoughts and prayers continue to focus on God's omnipotence, omnipresence, and omniscience...therefore, knowing there is no spot within Nicholas that the light of God does not reach.
May 7, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, May 6, 2006 11:28 PM CDT
GOOD DAY-ALL DAY AND NIGHT
-Outside play with Nicholas riding/driving a miniature race car around the playyard at Brent's Place. The miniature car looked just like those at miniature raceways; however, it had pedals instead of an engine. Because we wanted Nicholas to feel the excitement of power and speed (again), dad was the engine pushing Nicholas around the track. It was fun seeing Nicholas maneuver the car at high speeds and on sharp turns. I guess you could say dad had a view as if there was an "in-car camera."
-"This is FUN," Nicholas screamed with joy and laughter in his voice while mom and Nicholas were playing "Mother May I" in the play area. He directed mom to do a lot of silly things around a made-up obstacle course.
-The play structure provided lots of fun as we created games and activities using the structure's bars, slide, school house facade, and a seperate miniture wooden/brick house.
PICTURES: We cannot wait for you to see the pictures of all this fun. Clearly, the light of love has Nicholas outwardly glowing and his eyes sparkling. We will try to make time to get all the Denver pictures posted soon. Be ready to smile seeing Nicholas' spirit shinning-through all that he is overcoming.
NOTE: again, no pain medicines needed and we rejoice and give thanks. As Nicholas' doctor said yesterday, "Nicholas keeps us on our toes!" referring to the amazing ways Nicholas has been lifted out of troubling moments and some troubling days.
May 6, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, May 5, 2006 11:59 PM CDT
GOOD START TO THE DAY as Nicholas woke up joyful with more strength, ease of walking, more lively display of his spirit, ease of eating, and overall more engaging with everything and everyone around him.
REACTION TO A MONTHLY TREATMENT had us afraid when Nicholas awoke 30 minutes into a 4-hour infusion of IVIG (immune booster) saying he could not breathe and "I feel like I am going to die." Mom & dad went into action with our love, stopping the IVIG infusion, calling in the medical team, and expressing God's presence (including the understanding that "There is no spot where God is not"). The doctors and nurses went into action: confirming the IVIG infusion was stopped; providing constant flow of oxygen; administering Hydracortisone (in addition to pre-medications already "on board": Benadryl, Tylenol, and Zantac (Ranitidine); listening to his lungs (they were clear); checking his oxygen level; and then hooking him up to monitors providing continuous awareness of vital signs. Then there was a level of calmness over Nicholas as he rested and fell asleep. And when he awoke he was calm and joyful-imagine that.
A decision was made not to continue the infusion today; we will do it next week (now, with four pre-medications).
BMA THIS COMING MONDAY (May 8) to check the status of the bone marrow. We pray and cry out to God for His healing touch as we trust and believe His healing words. We expect good things because love begets love, good begets good, and God-love and spirit-is good. We expect God's words to come back to Him in truth.
GOOD EVENING although Nicholas had a couple episodes of sadness and crying tonight that we transitioned into prayer and crying. Of course, we do not have answers to so many questions Nicholas has about "all this leukemia and bone marrow stuff" including questions that we, mom & dad, have about it all.
As Nicholas cries out for mom & dad, saying, "father, mother...," it seems to comfort him knowing we hear his crys and we are right there! And thinking about the comfort we provide Nicholas, we are comforted in the face of all that is going on as we cry out with Nicholas saying, "Father...". If mom & dad can comfort Nicholas by hearing and being there for him, we look to God-our Father-for His comfort and "being there" for Nicholas recognizing that He offers infinitely more of everything Nicholas needs.
Nicholas had a good evening "playing and having fun": opening and reading cards received in the mail, PS2 games with mom, "rough housing" with dad, conversations with mom as well as dad on a variety of topics, and all three together watching a movie: The Road To El Dorado ("Captivating songs and spectacular animation" about a search for gold with unlikely heroes making a decision to run off with the gold or face unforseen dangers to save the people of El Dorado.)
And NO pain medicines again-imagine that!
May 5, 2006 Blood Counts:
WBC: 1.7
HGB: 10.4
PLTs: 57
ANC: 51
___________________________
Thursday, May 4, 2006 11:59 PM CDT
GOOD DAY MEDICALLY
After the last few days needing pain medicine every two hours around the clock, NO pain medicine was needed at all today-yeh! Along with being free of pain, Nicholas "showing" more of himself is more than pleasing to our eyes, ears, and hearts. His WBC rose again (good) and there were a lot of new cells forming and looking like good generation of young healthy cells.
GOOD DAYS SPIRITUALLY
The ups and downs of this roller coaster journey keeps us forward thinking as we "trust and believe" because of what we have seen. It is a journey of love even when we are down-because God is love so no matter what Nicholas faces he faces everything following God. We, truly, feel there is a message of love unfolding reminding us that hope with God means miracles of long, long ago.
BEAUTIFUL SURPRISES (Again)
Coming back to our apartment (home away from home here in Denver) after today's hospital-clinic treatment, there were several packages waiting for Nicholas. Packages of love representing all of you-from Nicholas' life-long friend, from a brother, from an aunt, and from someone we have never met.
The someone we have never met is a friend of our niece (Marcia): Terrence Robinson of Spun Silk Entertainment and Wolf Films (Universal City). Nicholas received an array of items that were everything he liked (even things we haven't wrote about on these journals-imagine that). And this is what they wrote:
"To the Gilbert Family,
We're friends of Marcia and she's been giving us updates from time-to-time on Nico, and from the information she relays, I have to tell you, words can't express how inspirational your son, Nico, and your family has been to our staff. We wish you all the very best, and know that you are all in our prayers every night. Please accept these gifts on behalf of the staff of Spun Silk Entertainment, and tell Nico to enjoy."
NOTE: As we have said before, it is not about gifts, it is the love that is behind the gifts and behind the thoughts and prayers from all of you. Blessings to us from God...
NICHOLAS' MEDICAL TEAMS, THANKFUL FOR GUESTBOOK ENTRIES
...We give praise to God and are so thankful for the medical staff being all and more than we would expect. As we have said before, we have been so blessed with seamless, heartfelt care from Children's Hospital Oakland, Stanford-LPCH, and here at TCH-Denver. We are blessed...
...And, it is so pleasing to continually read entries from "Nicholas's nurses" and staff from Stanford-LPCH and Children's Hospital Oakland. Nicholas loves and always remembers what one of his nurses at LPCH says, "Nicholas, I am always your nurse even if I am not assigned to you!" And these are the actions of everyone on his medical team.
May 4, 2006 Blood Counts:
WBC: 1.2
HGB: 10.5
PLTs: 19-Platelets transfusion today after this analysis
ANC: 48
___________________________
Wednesday, May 3, 2006 11:59 PM CDT
SPIRIT, LOVE
Nicholas' wonderful spirit has generated so much passion for life and love-from him to us and from us (including all of you) to him. His spirit is so evident from the abundance of love we see & feel coming from within him, as well as his outwardly vibrant spirit. Outwardly, we are speaking about the sparkle and glow we have witnessed from his pictures along this journey that you, too, have seen on this CaringBridge site and his photo albums (under Links below). By the way we will soon post pictures from Denver that continually shine in the midst of everything going on.
While outwardly love is ever-present, it is a reflection of the equally ever-present love deep within Nicholas. And God, Spirit & Love, is ever-present so we absolutely expect the reflection of love to fully and permanently be expressed in Nicholas.
PROGRESS
Today Nicholas' White Blood Count (WBC) surpassed 1.0 (1.1) for the first time since mid-March. The doctor was very, very pleased to see this improvement. While it is just one step closer to all that we expect, it is "one step closer!"
Gaining control of the pain (with focus on Nicholas not having to experience pain) through medication is getting better and Nicholas had a better day than the previous five days. This evening we took a little drive after the weekday hospital-clinic treatment and it was very, very pleasing to see & hear smiles & playful laughter from Nicholas. Although he was still very tired. The drive included a trip to a toy store and he enjoyed looking at a variety of toys (having mom & dad surprise him with a couple toys).
ANOTHER AMAZING BLESSING
The following words are only for the purpose of sharing another blessing.
A former colleague (Kathy) wrote to dad today, coincidentally at the moment I was trying to secure flights for our other three boys to be in Denver for Mother's Day-facing challenges for a variety of reasons. Without her knowing about this, she wrote offering available tickets. And what she later wrote is a reflection of how we have been blessed by all of you: "Throughout experiences such as this, it's a blend of the big and little things that can help make a day a little bit better..." We are blessed and we feel it from all of you. Thank you!
May 3, 2006 Blood Counts:
WBC: 1.1
HGB: 11.2
PLTs: 25
ANC: 22
___________________________
Tuesday, May 2, 2006 11:59 PM CDT
Another emotionally draining day trying to keep the pain under control; and we have a plan that includes mom delivering Dilaudid via IV, through his broviac (central line), that is faster acting than taking it orally. NO BLASTS in peripheral blood (after detection of blasts last Friday and yesterday)-we are so happy to see this.
God is God so we know we do not have to ask Him to be God: omnipotent, omnipresent, and omniscience. And we know we do not have to ask Him to love Nicholas and for Nicholas to be freed from any of this non-sense that has no power over God. Our trusting and believing is not blind faith because as hard as the last 529 days have been, there have been amazing blessings along the way. Nicholas IS an amazing blessing!
Remember, the next big medical step is a bone marrow aspirate that is scheduled to be performed May 19, checking to see if the treatment is doing what is expected. And we remember and know God...
May 2, 2006 Blood Counts:
WBC: 0.5
HGB: 11.9
PLTs: 48
ANC: 40
___________________________
Monday, May 1, 2006 11:59 PM CDT
NICHOLAS' CRY FOR GOD
"Why me, why doesn't God touch me?" was the cry for help Nicholas repeatedly cried this morning. His tears and full body expression to mom & dad was to hold him, pat him (rhythmatic patting of our hands on his body), and rock him gently to help soothe the pain away.
As we softly talk and pray with Nicholas we tell him that he continually does everything just right and as hard as it certainly seems, God loves him so very, very much! He knows, we know, that God has blessed him in many ways; AND we cry out to God asking Him to let Nicholas FEEL His love in more ways because Nicholas really, really deserves complete healing NOW. (We recognize that it is not our will, but His that will be done and His word tells us that Nicholas is healed by His love.) We pray so hard for the manifestation of God's love to completely do, NOW, what it does-reveal purity and perfection...
ROUGH SUNDAY NIGHT, MONDAY MORNING
Nicholas had a rough Sunday night (could not sleep, leg and back pain, and did not "feel like myself") and Monday morning. We thought things had already been extremely difficult for us, and now we are at un-imaginable difficult time with his pain and effects of the leukemia breakdown due to the medicine. We know God is leading us and we trust & believe Him completely; however, we are struggling so much right now and need Him more and more.
We also pray that the leukemia blasts now seen in the peripheral blood is the breakdown of leukemia in the bone marrow as a result of this new medicine. God, who we need right now and always is You is our constant prayer along with our unwavering love and actions for Him.
NOTE: New apartment phone number at our home away from home: 303 864-9047 (same mailing address).
May 1, 2006 Blood Counts:
WBC: 0.9
HGB: 13.0
PLTs: 5-A Platelets transfusion today after this analysis
ANC: 18
Sunday, April 30, 2006 11:59 PM CDT
QUIET DAY
Today was another quiet, relaxing day full of joy (although we really miss being home with family and friends).
Tomorrow we begin week 2 of 6 of the every weekday treatment. We pray for God's continued shielding, protecting, guiding, and directing of our lives-full of love and comfort for Nicholas.
April 30, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 29, 2006 11:32 PM CDT
YESTERDAY EVENING AND LAST NIGHT:
Nicholas left the hospital mid-afternoon after being at the hospital since 3:55am, and was as vibrant as ever, yeh! He was smiling, joking, and just "playing and having fun." Imagine, time after time, challenge after challenge, this little light-Nicholas-shines through the darkest times and brightly lights up the world around him.
Last night he was as lively as ever and with a gentle touch of his hands on mom & dad from time-to-time seemed like another way for him to let us know of his amazing love and caring about others (in the midst of all that he faces). Talk about clarity of vision and purity of thought, we are blessed everyday with the constant reminders of purpose that Nicholas always leads us to. The purpose of focusing on our loved ones and love because when you "love" the clarity of purpose and actions lead us down the "right" path.
ENDLESS LOVE
While we pray for the possibilities that this new medicine offers, we trust God's love and believe His word and ALL the possibilities that He does provide-endless love providing endless good.
TODAY
Relaxing, restful day. And Nicholas was a typical, joyful 6-year old playing board games, wrestling-with mom, football catch with dad, reading, and...well you can see the picture in your mind and imagine our smiles seeing Nicholas playing and having fun. What a difference God always makes in our lives!
NOTE: 1 week down with 5 weeks to go before we return to California.
April 29, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 28, 2006 10:32 AM CDT
***Overnight Update***
NICHOLAS WAS IN THE EMERGENCY ROOM
Shortly after midnight Nicholas had some chest pain and then a fever (he has not had a fever since Monday). We were in the emergency room at 3:55am for blood cultures (to rule out any bacteria or virus) and a chest xray. The chest xray was clear (yeh) and the cultures will take at least 24-hours to reveal anything. We stayed in the ER until 8:30 this morning and then transferred to the clinic to see his doctor here at TCH-Denver.
The fever has broke (yeh), the chest pain has gone away (yeh), and Nicholas has finally been able to sleep (yeh). We will be in the clinic until sometime this afternoon for the Forodesine infusion, RBC transfusion because his Hemoglobin (HGB) is a little low, and continued monitoring. We will then go back to our home away from home-apartment-only 2 blocks from TCH-Denver.
The experiences last night are side effects that can occur. Here too, we are reminded to "Be still and know that I am God" and nothing has to occur that is contrary to God, Love.
April 28, 2006 Blood Counts:
WBC: 0.5
HGB: 9.2
PLTs: 49
ANC: 40
THURSDAY, April 27, 2006
(A snapshot of this journal is being recreated because somehow it appears to have fallen "off")
ANOTHER GREAT DAY (AND FUN WITH DAFFY DUCK AND BUGS BUNNY)
Nicholas had an uneventful day at the hospital (clinic) for the Forodesine infusion and afterwards he was still full of joy and happiness. The joy and happiness continued when we got back to our home away from home via a visit by Daffy Duck and Bugs Bunny (from Six Flags-Denver). Playing and having fun along with a game of basketball.
We pray that the Forodesine does what we all want it to do AND we pray for all the possibilities through God which is all we really need.
April 27, 2006 Blood Counts:
WBC: 0.9
HGB: 11.1
PLTs: 69
ANC: 42
________________________________________
Wednesday, April 26, 2006 5:01 PM CDT
CHANGE IN WEATHER, NO CHANGE IN LOVE
The weather has changed from cool, warm, hail, snow, and hot in consecutive days. And just like the continuous flow of love that appears everywhere, really everywhere, the changes in everything we are experiencing reveals God's constance presence, guidance, and protection. The joy of the various degrees of nature compressed in a few days has been amazing to see and experience.
Day three of this treatment and everything is going even better than planned. Nicholas continues to be without any pain-this is so amazing! In fact, this morning when the hospital staff talked to the pharmaceutical company (BioCryst) that makes Forodesine, they were excited about Nicholas' experiences this soon. It is so comforting to walk with God knowing that through Him all things are possible; and navigating things that Nicholas is experiencing really gives substance to trusting and believing when sometimes it is hard to do based on this terribly long journey. Love leads, surrounds, and always follows Nicholas every step of the way. In the face of awful challenges, we are so grateful to have God's presence and His love.
CONTINUED FORODESINE TREATMENT THEN...
Although this initial treatment lasts for 6 weeks, after the fourth week a bone marrow aspirate will be performed to check the status of the marrow. It is one thing to hope and pray that the medicine does what we would like it to do-destroy leukemia and move Nicholas into remission-and we pray for all those things and the glory to God. With gratitude we also pray for God's continued guidance of the doctors' minds and hands. And we pray that medically this stage of Nicholas' journey may lead to a healing path for so many of these beautiful kids.
YES, NICHOLAS HAD AN AMAZING DAY
Think about love and how you would want to see a child enjoying life. And know that Nicholas was surrounded by love (well, you know this because we feel your love too), enjoying being "out & about," simply playing and having fun, and learning through practical application of things with subjects like language, math, history, science, etc. in mind. Being able to continue his learning with so many things going on is another blessing.
April 26, 2006 Blood Counts:
WBC: 0.6
HGB: 11.3
PLTs: 10 (Platelets transfusion today after this analysis)
ANC: 31
________________________________________
Tuesday, April 25, 2006 5:19 PM CDT
ANOTHER UNEVENTFUL TREATMENT DAY-THIS IS GREAT
Remember, every weekday we take Nicholas to the hospital for a 30-minute Forodesine treatment (overall time at the hospital is about 2 1/2 hours) and he does not have to be in the hospital for this 6-week treatment. Note: After the 6 weeks, follow up to this treatment can be performed at LPCH and that is our plan.
We are so grateful that just like yesterday, continually Nicholas' spirit and joy is taking flight and illuminating our hearts through his actions and "way of being" that appear to be a way for God reminding us of His omnipotence, omniscience, and omnipresence. Today, Nicholas continued his exuberance before treatment and after treatment at the hospial. This is simply amazing and we are reminded...Be glad, rejoice, for this is the day the Lord has made...
MEDICAL NOTE
During this treatment the doctors will specifically monitor the Uric Acid and Electrolytes. Today the Potassium, Phosphorus, and Magnesium were a little out of range and tonight we are adding Potassium to Nicholas' ovenight hydration (via IV when he is sleeping).
AS HARD AS ALL THIS IS, IT IS A JOURNEY OF LOVE FOR ALL OF US
Simply stated, love has been amazing and love always and forever will flow from God, Nicholas, our family, and all of you. Thank you for doing the things that you do, and being the way that you have been for Nicholas and our family. ...and for all these beautiful kids who needs all of our love.
NOTE: We were ask where we were staying in Denver and below is that information. Generally you can see where we are by looking on the home page, under Hospital Information (even when we are home).
MAILING ADDRESS FOR WHERE WE ARE STAYING:
C/O Brent's Place
1129 East 17th Avenue
Denver, CO 80218.
PHONE NUMBER FOR OUR APARTMENT:
(303) 864-9452
April 25, 2006 Blood Counts:
WBC: 0.8
HGB: 11.3
PLTs: 28 (Extremely low, even after yesterday's Platelets transfusion)
ANC: 35
________________________________________
Monday, April 24, 2006 8:32 PM CDT
SMOOTH HOSPITAL TREATMENT
Today, Nicholas began the new chemotherapy treatment that is part of a Phase 1 experimental study. There is some medical evidence suggesting that it could help Nicholas, at least destroy some of the leukemia to make things better for Nicholas. And with God, it could do so much more because of God (trusting and believing).
It was a very smooth transition to The Children's Hospital-Denver and the staff are as great as the staff we have been blessed to have at the other hospitals. The infusion of the chemotherapy went as planned (30 minutes and uneventful). Also, Nicholas received a Platelets transfusion.
SNOW, AND FEELING GREAT-THANK GOD
We settled in to an apartment (beautiful, warm, old Victorian 2-story) that is similar to the Ronald McDonald House called Brent's Place. As we were settling in it began to snow-slow, soft, pedals of snow. And better than that, Nicholas is having a great evening: eating, looking out at the snow, energetic, mobile, full of spirit... Amazingly, this is a huge difference from this morning, from yesterday, and from the overall weekend. Has the medicine had a positive impact already? The doctor expects a positive impact within 2 days. And God is God so we are so thankful for all that he provides.
April 24, 2006 Blood Counts:
WBC: 0.7
HGB: 11.1
PLTs: 21
ANC: 48
________________________________________
Sunday, April 23, 2006 10:02 PM CDT
PERSONAL INTRODUCTIONS AND DAYLIGHT DRIVE
This afternoon we personally met Dr. Gore and based on telephone conversations with her, the building of the relationship was as expected. She has a wonderful blend of communication with the patient, parent, medical, and possibilities in mind. It was an easy flowing convesation and she had a very good understanding about Nicholas.
We have been so blessed with our doctors from Children's Hospital Oakland, Lucile Packard Children's Hospital at Stanford, and The Children's Hospital at the Univesity of Colorado-Denver. Their collaboration and handling of the baton, so to speak without letting it go, has been comforting. We are reminded of the following that a friend shared with us: When a door seems to have closed, God opens a window! Words, yes, however, it is more than comforting to know that God is in control of Nicholas and His guidance provides the direction and manifestation of all that is true to His word. The light of Love is shinning everywhere within Nicholas exposing all of Nicholas to purity and perfection-God's creation.
NOT SNOW BUT...
After our meeting with Dr. Gore we were driving back to the hotel when we heard loud banging and clanking. We looked around and realized the noise was coming from above. It was hailing and the hail was about a 1/4 inch in diameter. Everywhere, the cars and ground became covered with the hail. It was actually a beautiful sight although there were people running to take cover.
After the hail stopped, we went for a drive around down (in the daylight this time) and really enjoyed the character of Denver in terms of the buildings, parks, and trails (that we could see).
TOMORROW (Monday)
Tomorrow morning at 9:00 we will be at the hospital for administrative stuff and preparation of this new treatment that will begin tomorrow as well. We expect to leave the hospital by 1:30. The rest of the every-weekday treatments are scheduled to take about two hours. Remember, no hospitalization is planned and this treatment can generate medical improvement within a couple of weeks.
Again, we trust and believe.
April 23, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 22, 2006 11:59 PM CDT
QUIET DAY, MIDNIGHT DRIVE
Nicholas and mom & dad slept most of the day-we were all very tired. It was a quiet day for us and in the evening as we looked over the city of Denver from our room the sunset provided us with quiet, calm, and peaceful moments. Our Marriott hotel suite (relationship with The Children's Hospital for families away from home) has a kitchen so we were able to eat when we needed to. (We stocked up on food last night after we checked into the hotel.)
We enticed Nicholas to get outside, up and about, by letting him know that we could take a drive around downtown Denver-and he could watch the rest of a movie that he was watching during our drive last night from the airport to the hotel. YES, was his response and like the lyrics, "This little light of mind, I'm going to let it shine, let it shine, let it shine, let it shine...," There was a bright light illuminating from Nicholas. And it sure brightened our hearts and souls to see the glow from him.
Off we went for a midnight drive that included links to a couple of Nicholas' passions. What do you think they were? ...Okay, 1) The Pepsi Center where professional basketball is played-home of the Denver Nuggets; and 2) The United States Mint-where money is made.
THANK YOU
Again and again, we know that we are blessed to also have YOU in our lives. Thank you for your thoughts, prayers, and guestbook messages. They truly help and the guestbook messages with us being so far from home maintains the feeling of closeness.
TRUST AND BELIEVE...
April 22, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 21, 2006 11:59 PM CDT
NICHOLAS IS NOW IN DENVER
We had a very nice early evening flight and arrived in Denver at 8:05 PM MST (7:05 PM PST). Soaring above the clouds is always a wonderful feeling. Seeing the snow-covered mountain tops, evening lights starting to bring character to the ground below, and the sunset from the sky was just beautiful. Nicholas had a good time, imagine that (enjoying it all from his window seat)!
When we were on our way to the hotel Nicholas talked about this 6-week stay. He then began to cry, wanting to just be home. We talked and mommy found the right words to provide a level of comfort the soothed him. We are looking to break up each week with something special from different friends each week. Note: The 6-week plan is a two-hour (approximately) visit including half-hour outpatient treatment at the hospital everyday, except the weekends we will not have to go to the hospital at all.
While we are all tired, being with Nicholas and loving him so deeply every heartbeat and step of the way, mom & dad are engergized by the love within and around Nicholas. And that love was fully unleashed tonight as Nicholas was being Nicholas-playing and having fun in spite of it all.
WEEKEND CONVERSATION/VISIT WITH THE DENVER DOCTOR
Tomorrow (Saturday) or Sunday, Dr. Gore will meet with us and begin her relationship with Nicholas (as well as us). This weekend conversation/visit is a nice touch toward the acclimation to The Children's Hospital, University of Colorado.
April 21, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Thursday, April 20, 2006 11:59 PM CDT
(April 21, 6:30 AM PST)
GOOD DAY, GREAT NIGHT
Nicholas had a good day and a great night. The day was spent playing a little bit and then resting as he received a Red Blood Cells transfusion and Platelets transfusion before we left LPCH this evening. The night was full of smiles, laughter, and fun with friends (grown ups).
Mom & dad stayed up very, very late and into the morning light as we prepared for the 6-week trip to The Children's Hospital at the University of Colorado, Denver. (Please refer to the April 13 journal for more information.)
A SENSE OF CALM, PEACE, AS WE JOURNEY ON
Please remember with us:
"There is no spot where God is not!" From the depth of our being is God's truth that whatever is contrary to His love, has no place in Nicholas. God fills even hidden places (like Nicholas' bone marrow) with light, love. He exposes, reveals, and opens things up so that nothing can be hidden from His truth. Through it all, just look (deeply as well) and listen to Nicholas, amazingly he truly illuminates with rays of sunshine that warms your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others are testaments of Love. We pray for all of these beautiful kids and for this truth to be realized as they bless the lives of everyone around them.
We recently shared the following hymn through Nicholas' site and we want to share it again as we journey on:
Everlasting arms of Love
Are beneath, around, above;
God it is who bears us on,
His the arm we lean upon.
He our ever-present guide
Faithful is, whatever betide;
Gladly then we journey on,
With His arm to lean upon.
From earth's fears and vain alarms
Safe in His encircling arms,
He will keep us all the way,
God, our refuge, strength, and stay.
THANKFUL NOTE (late entry to the April 18 journal that you may have missed)
Corporate Angels is a nationwide network for corporations offering flights for patients in these kinds of situations when their corporate planes are flying to the same destination. Amazingly, a corporation-Granite Construction-paid for a round trip flight commercially. They did not have a plane going to Denver and some how, for some reason their CEO/President wanted to still help the Gilbert family. We do not know who he/she is or why us, as we understand this is something Corporate Angels administrators have not seen happen before-not even from really, really big companies.
What comes across our thoughts right now is that "it is not the size of your heart, it is simply amazing to have a loving heart." And our hearts our warmed knowing that people and companies do so much to help others in a variety of situations/ways-"giving (how ever you do) is loving." Not only did Granite Construction want to pay for the trip, they made it happen through their own corporate travel department. What a blessing and what true angels lovingly helping when no one is even looking (no publicity)-thank you Granite Construction.
April 20, 2006 Blood Counts:
WBC: 0.6
HGB: 8.9
PLTs: 45
ANC: 72
________________________________________
Wednesday, April 19, 2006 9:27 PM CDT
ONE MORE NIGHT AT LPCH
Nicholas had a couple fevers this morning and from 12:30 this afternoon to 8:30 tonight he did not have any fevers. However, at 8:30 he had a fever. Thankfully, no bacteria or virus have turned up. The doctors want us to stay one more night to ensure everything is okay and the revised plan is that we will go home tomorrow morning. Then, he will receive a 24-hour dose of antibiotics to cover him during Friday's trip to Denver.
A friend who visited us last night said, "Nicholas looks great-and if we did not know what was going on medically-one would never know..." Yes, and what we do know is God's love and there is no love deeper or care better!
DISNEYLAND VISIT AT LPCH
Nicholas woke up to two colorful surprises-Mickey and Minnie Mouse visited Nicholas. Nicholas "half-way jumped" out of bed, put his mask on and had a GREAT visit with Mickey and Minnie. Spontaneously, Minnie Mouse and Nicholas embraced for a very, very long period of time. And then it was Mickey and Nicholas. What a treat! Nicholas asked mom if she would write a note for him and he dictated, "Mickey and Minnie came to see me at the hospital; and I had lots of fun. I love Mickey and Minnie."
PAIN, WHAT PAIN
Well, Nicholas has not needed any pain medicine today and we will leave it at that..."There is no spot where God is not!"
ACTIVITIES TODAY
Dodgeball, basketball, painting, and other fun stuff with mom & dad and staff in Nicholas' room.
NICHOLAS' LIST
Today, Nicholas met with a LPCH social worker that has been with us every step of the way. In concert with the nurses and doctors, the social workers help in a variety of ways. This afternoon the social worker and Nicholas had an open, free-flowing conversation. Below is Nicholas' list from the conversation:
THINGS I WANT
-Super powers (being fire, really strong, stretch real far).
-To fly.
-Go to Disneyland and The Monterey Bay Aquarium (again).
-When things hurt, for mom & dad to fix it.
-I like it when mom rocks me.
-I like it when dad hugs me when I don't feel good.
-I want to play soccer in the sun.
...
HAPPY
-Playing with my toys.
-Drawing and painting pictures.
-Writing, board games, card games.
-Playing with friends.
-Easter egg hunting.
SAD
-I don't get sad that much.
THINGS I DO NOT WANT
-No more pokes (with needles) or shots.
-Green beans.
-Eggs.
-Sometimes I don't want to go to the hospital.
AS ALWAYS, GOD IS IN OUR LIVES (before us, behind us, on the side of us, and within us)
From the depth of our being is God's truth that whatever is contrary to His love, has no place in Nicholas. God fills even hidden places with light, love. He exposes, reveals, and opens things up so that nothing can be hidden from the truth. Through it all, just look and listen to Nicholas. Thank you, Lord!
April 19, 2006 Blood Counts:
WBC: 0.6
HGB: 9.9
PLTs: 64
ANC: 180
________________________________________
Tuesday, April 18, 2006 11:57 PM CDT
IN THE HOSPITAL AND PLANS UNFOLDING FOR DENVER
-Fevers off and on. However, you know Nicholas, thankfully he manages well through them in terms of not letting anything dim his spirit.
-Thankfully, so far the blood cultures to assess the fevers have come back negative (no virus or bacteria).
-Administration of Dilaudid is managing pain well. It is planned that we will go home with Dilaudid and another significant pain medicine. Because we feel it we will say it-God is really all that we need. Just like the thoughts of anything medically happening, pain medicine does not have control over Nicholas. God is God!
-We hope to be going home tomorrow evening because Nicholas wants to be home for a couple of days (although it would be just one and a half days) before we depart to The Children's Hospital at the University of Colorado in Denver.
-And we are on track to depart Friday evening for Denver. In the midst of all that is going on, the administration of pulling everything together to be away, get there, and have all the needs in place is a chore! Thankfully, the staff at the hosptials, the insurance companies, and other key places have been very caring and action oriented. (Our health insurance company has been very caring and personally attentive; and we have these feelings about them even though travel and lodging will not be covered because it is not a transplant. We say this because we can imagine the heartache families must have when they are faced with an array of challenges outside of the medical situations they face. We are blessed and we know it!)
Thankful Note: Corporate Angels is a nationwide network for corporations offering flights for patients in these kind of situations when their corporate planes are flying to the same destination. Amazingly, a corporation-Granite Construction-paid for a round trip flight commercially. They did not have a plane going to Denver and some how, for some reason their CEO/President wanted to still help the Gilbert family. We do not know who he/she is or why us, as we understand this is something Corporate Angels administrators have not seen happen before-not even from really, really big companies. What comes across our thoughts right now is that "it is not the size of your heart, it is simply amazing to have a loving heart." And our hearts our warmed knowing that people and companies do so much to help others in a variety of situations/ways-"giving (how ever you do) is loving." Not only did Granite Construction want to pay for the trip, they made it happen through their own corporate travel department. What a blessing and what true angels lovingly helping when no one is even looking (no publicity)-thank you Granite Construction.
-Visits, lots of them today, were great representatives for "all of you." Our hearts are warmed by the continuous love and amazing friendships. And we were so comforted and lovingly touched by the Tsern family who brought dinner tonight (Nicholas' favorite-Japanese food) even though they are navigating through "leukemia and bone marrow stuff" with their beautiful son, Matthew.
-Uno king! When Nicholas found out that I was going upstairs at LPCH to write this journal, he asked, "Dad, will you write that Nicholas is the best Uno king in the world? If anyone wants a match, ask them to come on!"
Not just words: trust and believe, trust and believe, loving God through it all, we trust and believe.
April 18, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 17, 2006 11:59 PM CDT
VERY ROUGH SUNDAY NIGHT AND FEVER HAS NICHOLAS IN THE HOSPITAL
Last night was extremely rough for Nicholas as he just could not rest or sleep at all. He said it was the worst night of his life-and we held him tight, expressed and demonstrated our love, prayed with him, played Christian-music-for-kids (that we all enjoy) through out the rest of the night, and prayed, prayed, prayed. Morning seemingly came so quickly. We cannot imagine how we would have made it through the night without praying. Because God is omnipresent, simply put, "there is no spot where God is not" and trusting His omnipotence we believe-in fact-that His omniscience will deliver Nicholas free from anything contrary to purity and love.
During the clinic appointment this morning Nicholas had a fever. The standard medical process for a fever in these cases is a minimum 48-hour hospital stay for antibiotics and action to eliminate any virus or bacteria.
Understandably, Nicholas was not happy about the hospital stay. However, Nicholas being Nicholas, this evening his spirit shined through "it all" and his love touched our hearts. We were amazed once again! How does Nicholas go through all that he does and come through with a smile? We wonder how does he continually demonstrate caring about others during and after these times? And we know, we know that it is God who has never left Nicholas for a moment. Who has never, not heard our thoughts, our pleas, and our prayers. It is God enabling us to navigate through these trials & tribulations because they have no power over Him.
Frightened and as hard as these trials & tribulations seem to be, "WE WALK WITH GOD ALONG THE WAY" and trust they will continue to be JOYFUL, DOMINION DAYS. We believe in love and the promises that God has made!
April 17, 2006 Blood Counts:
WBC: 0.9
HGB: 12.4
PLTs: 11-Because of this low number, a Platelets transfusion was given this evening
ANC: 230
________________________________________
Sunday, April 16, 2006 11:59 PM CDT
ROUGH NIGHT, ROUGH DAY, AND MOMENTS OF JOY SHINED THROUGH
Nicholas had warm, loving visits over the weekend and joyful moments. And, last night and today were rough for Nicholas. It has been more emotionally and physically draining for mom & dad and like the sparks igniting Nicholas' spirit enabling him to reveal his love for God, people, and joyful playing, mom & dad call on God to continually ignite our ability to lovingly comfort, support, and "be with" Nicholas as he needs-as we all need, rejoicing His love and healing touch upon Nicholas.
We know God hears our pleas as we pray, "Dear lord hear our pleas, removing suffering from any part of which it does not belong-which is to remove ALL and ANYTHING contrary to You, as well as any suffering from Nicholas because he is your child, Lord. You are who he needs RIGHT NOW!" There is no spot where God is not! These are words AND they are the "actions" of God and we plead for His words to not return to Him void, trusting that God does not have to be asked to be God-He is God.
Early evening, Nicholas and mom & dad were cozily bundled up swinging on the bench-swing on the patio as the nearby waterfall was roaring, birds chirping, wind gently blowing, clouds slowly sailing, and soft Hawaiian music playing.
The Hawaiian CD playing was one of our favorites when we are swimming in the pool; and it has a song titled, "Dolphin" which is so soothing. Following are some of the lyrics:
Oh Dolphin, tell me what you see out in the ocean.
Oh Dolphin, are you really free or is it your motion?
Take me away from here to some cool tropical isle
Leave all your doubts and fear, won't you please help me to smile?
…
Oh Dolphin, following the wind like a companion.
Oh Dolphin, dancing in the deep blue water canyon.
Rising out of the sea you fly flashing a smile at the sun.
Sing a sad lullaby before your having to run…
KNOWING WE WALK WITH OUR LOVING GOD-PROVIDER AND PROTECTOR
Below are words we have spoke about often, that have reassured us along Nicholas' journey. And it is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas-AND praying and believing God's love for all of these kids is all that all of these kids need and have.
"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."
"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."
TOMORROW (Monday)
Early tomorrow morning we will be at LPCH for lab work and possible Platelets and Red Blood Cells transfusions. Tomorrow and everyday we walk with God, trusting His love and His omnipotence, omnipresence, and omniscience.
PLEASE CLICK ON View Photos FOR A SNAPSHOT OF NICHOLAS' WEEKEND
April 16, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 15, 2006 11:59 PM CDT
A LOVING EASTER
We wish you a happy Easter! Easter is a wonderful time of year for many kids and families; and it is a wonderful time of year for Nicholas and our family for several reasons. One, the reminder of God's omnipotence, omnipresence, and omniscience. Two, we pray for God's continued manifestation of love and spirit throughout Nicholas in seemingly dark hours as we feel His presence and see love & spirit operating in Nicholas. We are blessed with Nicholas' smiles and love that have shown us so much more about God, love, and spirit. Three, it is the time of year for our other three son's birthdays: April 14, 18, and 19.
Our family received, from AAA-people & performance, an incredibly colorful, fragrant bouquet of roses that warmly brought about a refreshing sense over our thoughts. And they sent an Easter bunny from the Build-A-Bear Workshop that is so soft & cuddly-we cannot wait to see & hear Nicholas' expressions Sunday morning. We speak about blessings often, thankfully because we have been blessed so often in so many ways.
And AAA has been an amazing employer transcending "values" into action through its way of being as an organization even when "no one" is looking. The people, from all facets of the organization, with their love have cared for our family every step of Nicholas' journey-what an amazing blessing through our times of piercing heartache to be so loved by what people do (it is easy to say one is a caring organization, it is love for why one exists to be a caring organization). Thankfully, we have also seen this type of love from an organization shine on Nicholas and our family from Nicholas' Montessori school and the Golden State Warriors basketball organization from day one of this journey!
NICE DAY (Saturday)
Saturday was quiet in terms of action; however, love continues to shower on Nicholas from everywhere. From morning to night there were visits from a friend we met at Children's Hospital-Oakland, short-time family friends, & long-time family friends.
LAST NIGHT (Friday)
Nicholas had a rough night trying to sleep and mom was up throughout the night comforting him. Our son, this little boy, needs God's help. We know that Nicholas continues to receive blessings of love-and we lovingly pray, asking for our little boy to not only know he is loved, completely feel and see love manifested in him enabling him to be free of pain and any disease because they do not have any place in him. Our thoughts of love are aligned recognizing God's omnipotence, omnipresence, and omniscience.
April 15, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 14, 2006 11:59 PM CDT
ANOTHER GREAT DAY
Nicholas had another great day: Easter egg hunt in the back yard with grandparents; swinging on swings; telephone call from his former school class (the kids sang "Happy Easter to you..." and the teacher engaged Nicholas with a variety of interactive learning over the phone); visit by his teacher including a movie, "It's The Easter Beagle, Charlie Brown;" visit by friends included lots of games and kids being kids at play; and visit by a long-time family friend.
The picture above as well as the three pictures seen by CLICKING on View Photos provide segments of the day and last night: My granddad and me, …swinging and having fun, simple pleasures generate happiness.
GRATEFULLY RECEIVING LOVE
Along with being all that we can for God and Nicholas, we try very hard to do the small things that we can for our older sons, and the loving way we can for all of you. Love is the lens that we look through and we know we are blessed to have love infused in our lives because of all of you through your thoughts, prayers, guest book entries, and visits.
We see every moment of love as a blessing-nothing is taken for granted as we more than appreciate the way you continually show up in our lives. And the way Nicholas continues to… "playing and having fun" are beautiful gifts every moment. You help fuel our fire to continually strive to be all that we can and this, too, is a blessing from God.
GETTING READY FOR DENVER
We have contacted various agencies like the Corporate Angels Network and Angel Flight for a private flight (with their connections communications have gone out to many pilots) and are doing all the things needed for a 6-week trip although all that is really needed is getting Nicholas there.
Another segment of Nicholas' journey with God directing our path!
April 14, 2006 Blood Counts:
WBC: 0.6
HGB: 12.4
PLTs: 54
ANC: 186
________________________________________
Thursday, April 13, 2006 9:48 PM CDT
WE ARE HEADING EAST
The consultation with The Children's Hospital at the University of Colorado, Denver went very well in terms of the conversation about Nicholas. The drug in this experimental protocol is Forodesine and it does offer a medical hope when there was no more medical hope! We are making arrangements to leave the Bay Area for Denver next Friday, April 21. The treatment will start April 24 with IV infusion of Forodesine, Monday-Friday, via their Outpatient Clinic. We will be in Denver for the 6-week course; then we will return to the Bay Area for follow up treatment at LPCH. (Once again, the collaboration shown by multiple hospitals revealed the main focus-these wonderful kids.)
It is an experimental protocol offering therapeutic and other potential benefits that could medically steer Nicholas toward a medical cure. And it appears to be tolerable, minimum side effects. As we always pray, we listen for God's voice, His direction. With trusting and believing it is God we lean on and God we will follow. We trust His shielding of Nicholas and believe that because of His love for Nicholas (and all of these wonderful kids), we are guided toward making the right decisions. Continually, we also ask God for His guiding of the doctors' minds and hands… God is all that we need and He has been "a very present help" throughout this journey-we see it and sense it in Nicholas!
NICHOLAS HAD A GREAT DAY
Thankfully, we get to keep saying that Nicholas looks great and is doing great. His energy was truly amazing all day long, not congruent with the medical news-praise God. Nicholas loves the sunshine so he was thrilled with the weather, playing outside for the better part of the day. He searched for a variety of nature-things on the back patio/yard and in the front yard; played airplane on the tower of his play structure, "taking mom to Disneyland;" painted on his easel outside; and even took a short spin on his bike. He and mom then played on the front bench under the olive tree, making up games with olive seeds.
The sounds of a child at play are so beautiful!
April 13, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Wednesday, April 12, 2006 11:59 PM CDT
"THROUGH IT ALL" NICHOLAS HAD A GOOD DAY
Yes, through everything going on we are so happy to say that Nicholas had a very good day. He was very active with lots of energy and full of spirit: running around, playing with neighbors who visited after they arrived home from school, and a short visit from other friends this evening. If you did not know what was medically going on, you would not know that something medically is "thought" to be going on-and we are so happy to see & and say that God, Spirit & Love, manifesting within and around Nicholas is in control so the medical aspect of things amazingly HAVE to take a "back seat." The medical aspect is what it is, and God is who He is!
We are holding on, trusting & believing, as the continuance of miracles that we see are revealing love and happiness in Nicholas' life. We do not know what "tomorrow" will bring, however, God in Nicholas' life continues to bring love, joy, spirit...and today like the rest of OUR lives trusting, believing, and being better in so many ways each day reveals love in many ways.
TELEPHONE CALL OF HOPE
While the medical development of everything culminated into the doctors not having anything medically left to cure Nicholas, following up on some new research, shortly before noon we received a call from Nicholas' LPCH doctor about a potential protocol that is new (phase 1 treatment). Our LPCH doctor talked about Nicholas with a lead doctor of this protocol at The Children's Hospital, University of Colorado at Denver and the doctor believes that the protocol may offer therapeutic and other benefits to Nicholas. While we have some research information discovered over the last week we do not at all have comprehensive medical information on this protocol. Tomorrow (Thursday) we will have a telephone consultation to determine if this protocol is something for Nicholas-a medical hope when there was not a medical hope.
We are praying, listening, and "following" our hearts & minds as we continually ask and know that God is who we need... Trusting and believing, we will follow... And happily, Nicholas is smiling, playing, learning, loving...
April 12, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Tuesday, April 11, 2006 11:59 PM CDT
THE NOW WHAT THAT HAS ALWAYS BEEN THE NOW WHAT
We have been so blessed to "see" what we have continually seen in Nicholas-our little sunshine constantly revealing the "twinkle" in his eyes, the "love" from his smiles, and "passion" for caring about others. And we are so blessed to continually see these blessings now.
The "now what" medically does not offer Nicholas what he needs. So now, thinking back several months ago there was a period of time Nicholas was not feeling like himself and he asked, "Why doesn't God give me what I need?" We, too, have asked this question in our prayers-down on our knees crying as well as upright stretching, reaching out to God. This was/is a difficult question to answer and with Nicholas we have talked about all the things that God HAS given us along this journey. And with so many thanks we do still pray asking God for the healing Nicholas so deserves. We know that all the things we continue to receive are, truly, blessings enriching our lives in ways we have not even thought about. And, we do know the type of answer-healing-that Nicholas is looking for (that we are looking for). We just do not know the answer in terms of the medical healing.
However, WE DO KNOW GOD AND HE IS THE ANSWER. We trust and believe this to be true-it is His word and we pray, pray, pray trusting and believing that it will not return to God void. Faithfully we trust and lean on God and as hard as "all of this leukemia and bone marrow stuff" is we do feel God's love and His presence.
Thank you for staying with us and all of our rejoicing to date, and all of our rejoicing in "all of our tomorrows!"
WHAT WE NEED FROM YOU!
Following are two songs we have previously shared on this CaringBridge site and we ask that in addition to your continually praying and thinking about Nicholas as well as believing, you once again refer to these two songs that are in our hearts.
:) HE'S MY SON
(If you would like to hear the song, please place the following in browser window: http://hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html")
Down on my knees again tonight,
Hoping' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You
Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone
Can You hear me?
Can You see him?
Please don't leave him,
He's my son
:) HOLD ON
(If you would like to hear the music and see the words at the same time, please place the following in browser window: http://www.inspiringthots.net/movie/hold-on.php)
Hold on tightly to what is truly important in life.
Hold on to faith, it is the source of believing that all things are possible.
It is the fiber and strength of a confident soul.
Hope
Hold on to hope,
It banishes doubt and enables attitudes to be positive and cheerful.
Trust
Hold on to trust;
It is at the core of fruitful relationships that are secure and content.
Love
Hold on to love;
It is life's greatest gift of all, for it shares, cares, and gives meaning to life.
Family
Hold on to family;
They are your roots and the beginnings that you grew from;
They are the vine that has grown through time to nourish you, help you on your way, and always remain close by
Friends
Hold on to friends;
They are the most important people in your life, and they make the world a better place.
Yourself
Hold on to all that you are and all that you have learned,
For these things are what makes you unique.
Don't ignore what you feel and what you believe is right and important;
Your heart has a way of speaking louder than your mind.
Dreams
Hold on to your dreams;
Achieve them diligently and honestly.
Never take the easy way or surrender to deceit.
Room for Others
Remember others on your way and take time to care for their needs.
Enjoy the beauty around you.
Have the courage to see things differently and clearly.
Contribute
Make the world a better place one day at a time.
And don't let go of the important things that give meaning to your life.
Hold on to these things!
LOVE CONTINUES
We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. God's Word is medication and life to Nicholas' flesh, for the law of the Spirit of life operates in Nicholas. Love is operating in Nicholas as we have continually seen Nicholas being Nicholas-illuminating with rays of sunshine that warms your heart; his strength, energy, enthusiasm, joy, & endless passion for caring about others are amazing.
Thanks for "holding on" with Nicholas, mom & dad, and our other three boys. Please hold on to God and PRAY with us as we hold on to God; and through God hold on to Nicholas, hope, trust, love, family, friends, ourselves, dreams, room for others, and contributing (you contribute so much in our lives-thank you).
April 11, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 10, 2006 11:59 PM CDT
FAMILY, FRIENDS, FUN
Today was ANOTHER GOOD DAY. Nicholas had fun playing kickball in the yard and talking to our neighbors. He enjoyed swinging on his swings with family friend, Allie, and along with mom spending time with Allie and her mother. "Ahh, this is the life!" is what Nicholas said to mom tonight as they were reading together and he had a cool sip of ice water. It was "icing on the cake" to hear that tonight because a late-afternoon short drive that included talks about basketball and the fun & learning experienced on the court together as well as a drive by the little league ballpark (Buckeye Fields) where someday he will be playing was a prelude to this is the life. And the good day continued into the night as former Ronald McDonald House mate, Kaeli (and her mother and brother) spent the evening with us. What another blessing to have developed a family relationship that extends beyond all the medical stuff and into Love.
TRANSFUSIONS TOMORROW (Tuesday)
Tomorrow we will be at LPCH for Red Blood Cell (reference HGB) and Platelets transfusions. We will also talk with Nicholas' bone marrow transplant (BMT) doctor who has worked in concert with the oncologist. We feel so fortunate to have always had doctors who seemingly "work for Nicholas" and the BMT doctor who has a warm, wonderful, perceptive way of engaging with mom & dad as well.
NOTE: Please click on View Photos to see Nicholas and his cake (unless you have already seen the cake photos via the third photo album below).
***For "Now What," please refer to the April 7 journal***
April 10, 2006 Blood Counts:
WBC: 0.7
HGB: 8.8
PLTs: 18
ANC: 224
________________________________________
Sunday, April 9, 2006 11:59 PM CDT
GOOD DAY
Nicholas had a good day doing "homework;" playing, using his computer to help with learning more about numbers and words; and lots of fun cutting, eating, and playing around as we celebrated his one-year post bone marrow transplant. PICTURES of his cake and celebration-smiles will be posted to this site tomorrow night (they are already posted, at the end, onto the third album below under Links).
Looking at Nicholas we smile with thanks and admiration for his amazing spirit continually shinning through-seemingly reminding us to "look" at him and not any numbers. God's loving touch comes through in ways we do not always understand; yet His touch comes through and we pray for help toward continued learning and understanding.
TOMORROW (Monday)
Tomorrow morning we will do blood draws at home, deliver to a laboratory in Lafayette to process, and they will deliver the analysis to LPCH by mid-afternoon. Results will determine if we take Nicholas to LPCH Day Hospital Tuesday for blood transfusions (amazingly, here too, Nicholas is doing just fine so we can not tell if any transfusions are needed). NOTE: Our adventure for miniature golfing and Expedition-picnic will take place sometime in the next couple of days because, simply, Nicholas was "playing and having fun" at home today.
***For "Now What," please refer to the April 7 journal***
April 9, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 8, 2006 11:59 PM CDT
A YEAR LATER
It was a year ago late last night, early this morning that Nicholas had his bone marrow transplant (BMT). God, we pray, bless the donor and other donors as well as those who lend a hand as best they can. Tonight mom baked a cake for Nicholas-he asked, "Can I have a cake for my special day? And can you put Easter eggs on it?" Mom had already planned a cake and other special things for Nicholas' special day. Nicholas sure loved getting a whiff of cake as it was being baked and mom decorated it with hand-designed Easter eggs using Easter colors (gel and snowflake sprinkles).
SURPRISED TREATS (other than eating)
Nicholas woke up to a visit by his teacher, Ms. Shirley. She brought an array of books for Nicholas and he picked one out for her to read as his day began. His grandparents, an aunt, and a cousin then surprised him with their visit. Just like yesterday when another aunt and uncle visited, Nicholas continually feels the love coming his way near and far.
AFTERNOON OUTSIDE SOAKING IN FRESH AIR AND…WELL NOT RAIN
In addition to the picture above seeing Nicholas enjoying outdoors, please CLICK ON View Photos to see his smile and a grin while outdoors today, and his lively spirit full of energy and enthusiasm this past Thursday right before we left LPCH. Thankfully, last Thursday his spirit and actions were not congruent with the medical news and for this we praise God for Nicholas' way of navigating through it all.
TOMORROW
Nicholas wants to go miniature golfing and have a picnic in the Expedition-probably somewhere near water because this is something he really enjoys (it is like miniature camping: nature/scenery, food, different types of fun, reading, togetherness…)
NICHOLAS, MOM & DAD, AND HIS BROTHERS
Well, all of this is just so, so hard. All of us wish we could trade places with Nicholas although we know that cannot be done. Nicholas, a son, a brother, and a special person in your lives too, is in all of our lives and we give earth-shattering thanks for the blessings we continue to see. And understanding more and more about God's love for Nicholas and His healing arms, our minds are guided toward calmness and peace. Nicholas is loved!
Everlasting arms of Love
Are beneath, around, above;
God it is who bears us on,
His the arm we lean upon.
He our ever-present guide
Faithful is, whatever betide;
Gladly then we journey on,
With His arm to lean upon.
From earth's fears and vain alarms
Safe in His encircling arms,
He will keep us all the way,
God, our refuge, strength, and stay.
- Hymn based on the work of John R. Macduff (nineteenth-century Scottish preacher)
***For "Now What," please refer to the April 7 journal***
April 8, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 7, 2006 10:56 PM CDT
THE DAY AFTER "YESTERDAY" AND LOVE IS LOVE
The day after yesterday does not bring about change in our hearts, minds, or souls as the "truth" about Nicholas continues. The truth is the amazing shinning light that continues to illuminate from Nicholas in many ways-through his eyes, smile, and loving nature that has astonished us throughout… The truth will always be that God loves Nicholas and we are so blessed to know that God is the same yesterday, today, and "tomorrow"-loving, protecting, shielding, guiding…Nicholas. This fight is awfully terrible and as hard as it is we cannot give in to anything contrary to the "truth." We do not know what to expect except God's love. Healing is going on!
NOW WHAT
-With Nicholas' blood counts being low, we are passionately praying for the spirit and love of God to do what it does: shield Nicholas from infection and fever helping to keep Nicholas out of the hospital over the next 10 days
-The doctors, we pray that with God's guiding of their minds and hands, are researching for novel-tolerable chemotherapy to generate the change in the marrow that Nicholas so deserves. The expectation is that on April 17 Nicholas will be back at the hospital to begin treatment determined from the research
-Next Tuesday, April 11, we will further talk with the doctors about the next medical steps
-And the "now what" now and always has to be keeping everything turned over to God and following Him. As hard as it is fighting this fight we trust God because you know how much we love Nicholas and we know that as much as we love… God loves Nicholas immeasurably more so Nicholas is in the right hands
NICHOLAS
Nicholas had a slow start to his day in terms of energy level-recouping from yesterday's procedures. However, you know Nicholas, his light always has shined through…and this evening he perked up and was beaming with enthusiasm.
April 7, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Thursday, April 6, 2006 8:50 PM CDT
NOT GOOD NEWS-WE ARE CRYING OUT TO GOD THAT WE TRUST AND NEED HIM
Late this afternoon we met with the doctors and discussed the results of this morning's bone marrow aspirate-it is not good news. The doctors report the marrow is 90percent leukemia. From day one we have focused on God seeing the love, smiles, and laughter from Nicholas because of Him. Throughout everything Nicholas has faced there has never been any reason to not focus on God. So while the medical news is not good at all, we will maintain our focus on Him, His never-ending and unchanging love for Nicholas, and that He is what we need.
Our thoughts, our prayers, our heart-aching cries call out admitting that what we need is God and we trust Him to continually be right there in and around Nicholas. The medical news is just that, medical news and nothing is congruent with God except love, purity, and perfection. We have seen God's work within Nicholas-you have seen the smiles and Nicholas' way of navigating through what he has faced. There is no reason for that to stop now! We know that all things are possible with God and love is guaranteed with God. So we trust, we believe, and we fight following God as we pray out loudly, yet so lovingly, crying that what we need is Him.
AND THE GOOD NEWS
Along with knowing God loves Nicholas, there was more truth about God's love today. Nicholas not only looks great, he is really feeling great. Other than waking up in the recovery room, very early this morning and this afternoon he was "playing and having fun." In fact, the doctors even marveled at how well he looks and his amazing spirit..."playing and having fun." We thank God for this amazing blessing: Nicholas not being congruent with the medical news! Thank you, Lord!
________________________________________
Wednesday, April 5, 2006 10:43 PM CDT
PRAYING...BONE MARROW ASPIRATE TOMORROW (Thursday)
Tomorrow morning at 7:30 another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Naturally we are praying for complete healing (free of any leukemia) realizing God's omnipotence, omniscience, and omnipresence. We are praying so very hard for the continuance of the miracles we have seen in Nicholas and for all the glory to God; for Nicholas to continue to feel and know that he is loved; and for Nicholas to feel and know that he is comforted because of God, mom & dad, and all of you.
We are praying for the marrow to express the love that is flowing freely throughout & around Nicholas and nothing contrary to love, purity, and perfection has a place within Nicholas because God's word is His word. We ask these things recognizing that it is not our will that will be done, it is Love that reigns over Nicholas and love begets love.
Have you seen the love that we have seen in operation? Have you seen the sparkle in Nicholas' eyes? Have you sensed the caring and loving that Nicholas continues to express, even when he has faced some terribly-awful challenges? Our little sunshine "rains" amazing love in our lives and mom & dad really hope that you see it, you have felt it, and that you stay with us in prayer and truth. We love the way that you are with Nicholas as well as with us. We lovingly call out and pray, "Oh Father...we love the way that You are with Nicholas and recognize that is so natural for Your love of Nicholas to lovingly see him through all that he faces, destroying anything contrary to You in his way." There is no spot where God is not!
FEVER THIS AFTERNOON AND NO FEVER LATE AFTERNOON
This afternoon Nicholas spiked a fever and by late afternoon he was free of fever. We do not know why he spiked a fever, however, we are so grateful that a few hours later Nicholas was without fever.
Amazingly, you would not even know that he spiked a fever because there were no other signs or symptoms other than than the thermometer. Nicholas was actively playing and learning with "Books-A-Live" and so lively that his energy was pouring over to those around him. With Nicholas, with God, we have learned over and over to only trust what we know-God-because nothing else sheds light on love and reflects love. Seemingly, this is what Nicholas does because "you would not even know that the thermometer was saying he had a fever!"
WHAT WE DO KNOW AND HOW WE SEE THINGS
While we do not know why medically things have shown up, we do know that God has always shown up and in Him we are loved, comforted, directed, guided, and we follow. With Him Nicholas, and mom & dad, cannot slide off the "slippery road" or be thrown from the "roller coaster" we have talked about during this journey. We are so glad that these are not just words of hope-they are testaments "of" God's love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the key medical information.)
NOTE: You know that Nicholas likes to write (along with so many other loves) and the interesting thing about his latest writing is that the sheet of paper is blank. However, throughout the days and under certain situations Nicholas pulls out the sheet of paper and "reads," saying, "The contract says..." And the remaining words generally are words that benefit him and are instructions for us. Words like, "The contract says you have to play Uno with me" or "... you have to give me all of your change." What we love about the contract is that "we get to play games with Nicholas, we get to spend time with Nicholas, we get to love Nicholas, we get to..." And we love it all because he deserves it all and "we get to..."
April 5, 2006 Blood Counts:
WBC: 0.8
HGB: 10.4
PLTs: 78
ANC: 224
________________________________________
Tuesday, April 4, 2006 10:52 PM CDT
***PLEASE SEE THE SPECIAL NOTE BELOW***
TODAY WAS A GOOD DAY
Nicholas continues to be without fever and we are so thankful. However, his left jaw has been sore and we are reminded that "there is no spot where God is not."
Nicholas received both transfusions (Platelets and RBC) very early this morning and they finished about 4:45 AM. Generally, he sleeps through transfusions but not last night so this afternoon he had a very relaxing nap. Thankfully, overall, today was a good day!
And tonight is turning out to be a good night: talking, playing, and just being together...helps to make good days and nights.
We continue to turn everything over to God, trusting His words and love. All the beautiful signs of love flowing within and around Nicholas over the months as all of us have directly or indirectly witnessed cannot be temporary, because Love is the same yesterday, today, and all of our (and your) tomorrows. It doesn't change except to be realized more and more each day-in greater ways!
***SPECIAL NOTE***
Early Thursday morning another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Naturally we are praying for complete healing realizing God's omnipotence, omniscience, and omnipresence. We are praying so very hard for the continuance of the miracles we have seen in Nicholas and for all the glory to God; for Nicholas to continue to feel and know that he is loved; and for Nicholas to feel and know that he is comforted because of God, mom & dad, and all of you.
We are praying for the marrow to express the love that is flowing freely throughout & around Nicholas and nothing contrary to love, purity, and perfection has a place within Nicholas because God's word is His word. We ask these things recognizing that it is not our will that will be done, it is Love that reigns over Nicholas and love begets love.
Have you seen the love that we have seen in operation? Have you seen the sparkle in Nicholas' eyes? Have you sensed the caring and loving that Nicholas continues to express, even when he has faced some terribly-awful challenges? Our little sunshine "rains" amazing love in our lives and mom & dad really hope that you see it, you have felt it, and that you stay with us in prayer and truth. We love the way that you are with Nicholas as well as with us. We lovingly call out and pray, "Oh Father...we love the way that You are with Nicholas and recognize that is so natural for Your love of Nicholas to lovingly see him through all that he faces, destroying anything contrary to You in his way." There is no spot where God is not!
Please refer to the March 1, 2006 and January 18, 2006 journals for the key medical information.
April 4, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 3, 2006 11:59 PM CDT
UPDATE #2
NO MORE FEVER
This afternoon's fever has gone away. Although there were two more readings of a fever early evening and tonight, at 11:45pm Nicholas was without fever. Yes! Naturally, we pray that Nicholas stays free of having another fever and with our prayers we think and keep the truth (as stated below) as the lens for seeing everything in and around Nicholas.
The Platelets and RBC transfusions will take place just after midnight (Tuesday morning).
NICHOLAS CONTINUES TO AMAZE-THANK YOU LORD
You can imagine Nicholas' feelings when we told him that we were going back to the hospital. Naturally he cried, and he raised his arms up for us to hold him as we prayed. We have said so many times that Nicholas does everything right...loving, caring, praying, sensing, cooperating... It is really hard to, well it is just really hard emotionally and physically for mom & dad. And we feel that it must be so, so, so much harder for Nicholas. And then, we watch Nicholas get through what he has to face with complete trust and love (although some times he says it is hard to trust what we say during some pretty rough times that he faces).
Yes, Nicholas had smiles tonight while playing and he did have more tears as well. As hard as it all is, keeping the truth as the only lens for Nicholas' path is what we continually realize in our prayers and our thanks. Like the smiles tonight, the truth of God's love provides what we need.
Note: With the bone marrow aspirate scheduled for Thursday, it appears that we will be in the hospital until Thursday afternoon.
UPDATE #1 5:28 PM CDT
BACK IN THE HOSPITAL
This afternoon Nicholas had a fever and right afterwards the hospital called regarding this morning's blood draw: Platelets and Hemoglobin are low so a Platelets & Red Blood Cell (RBC) transfusion are needed.
We are on our way to LPCH and will be admitted onto 2N (where Nicholas has always been when at LPCH).
We KNOW THE TRUTH through God: Nicholas is the picture, heart, soul, EVERYTHING of purity and perfection. NOTHING has power over God and His love for Nicholas. We have seen His love manifest wonders-as it always does-throughout Nicholas and pray the continued manifestation of purity does just what God is-everything good, everywhere.
April 3, 2006 Blood Counts:
WBC: 0.7
HGB: 7.0
PLTs: 7
ANC: 168
________________________________________
Sunday, April 2, 2006 11:59 PM CDT
QUIET, NICE DAY
Today was a very relaxing day for all of us; and it was an uneventful medical day (just the way we like it of course).
Loving, trusting, believing, and witnessing God's loving touch in and around Nicholas...
NEXT STEPS
1. Blood drawn at home Monday & Wednesday and delivered to a local lab to process (it will be so nice to not have to make the early morning trips to LPCH)
2. Blood counts to recover from the chemotherapy that ended March 6
3. Bone Marrow Aspirate scheduled for Thursday (April 6) to check the status of the bone marrow. Praying for complete healing realizing God's omnipotence, omniscience, and omnipresence.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative medical information.)
April 2, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 1, 2006 10:31 PM CST
CAUTIOUS DAY
This morning was quiet and cozy. However, this afternoon and evening was cautious because Nicholas' temperature reading was borderline "fever." We were comforted through prayer and comforted because by late evening, without any fever medicine administered, there was no fever-"Thank You Jesus!" were Nicholas' words. We did talk with the doctors this afternoon, AND prayed to our Father throughout the day.
BLANKET FROM PROJECT LINUS
Project Linus is a 100percent volunteer non-profit organization and their mission is to provide love, a sense of security, warmth and comfort to children through the gifts of NEW HOMEMADE WASHABLE blankets that are lovingly created by volunteer blanketeers. Although it is a gift from Project Linus, we found out that Project Linus received a request from a friend in Germany to have it made for Nicholas. Do you see the dolphin on the blanket above? It was the first thing we noticed (remember, Nicholas loves dolphins).
WITH THE RAIN CAME SOME NICE SURPRISES FOR NICHOLAS (AND MOM)
For mom & dad, this journey is one of thanks for many blessings that Nicholas (and we) have realized from the beginning. Blessings of love from the miracles we continue to see blossom in and around Nicholas, blessings all of you provide via your prayers and presence on this CaringBridge site, and the love shared by us all. We say this because God and love is what we need for the blessings we have seen and pray to continually see.
So the unexpected nice surprises that warmly rained on us from friends "near and far" over the last few days were:
-Money sent to Nicholas that had been collected from all over the world (remember, Nicholas really, really loves to earn, collect, and share money)
-A Prayer Box bracelet mom received generating from a "thought" from another amazing friend
-The private suite for the Golden State Warriors' game last night
-And as always, all of you continually staying with Nicholas (and mom & dad) in the ways that you do-we know that we are blessed and we thank you so much for your love
April 1, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Friday, March 31, 2006 11:59 PM CST
FUN WITH FRIENDS AND FAMILY, THANKS TO A FRIEND
Nicholas had a great time tonight at the Golden State Warriors' basketball game; and after the game he really enjoyed the NBA Entertainment League Celebrity Charity basketball game featuring lots of stars (see below). A private suite enabled us to control the environment and allowed everyone to freely enjoy each other and the games.
FOLLOWING ARE SOME OF THE CELEBRITIES WHO PLAYED TONIGHT:
-Frankie Muniz, of the TV show "Malcom In The Middle," and the star of the "Agent Cody Banks" movies...
-Matthew Lillard, who played Shaggy in the "Scooby Doo" movies...
-Ice Cube, the star of the movie "Are We There Yet" and the series of movies: "Friday," "Next Friday," and "Friday After Next"...
-Dean Cain, who played Superman in the TV series "Lois and Clark"...
-Morris Chestnut, one of the stars in the movie "The Best Man," "The Brothers," and "Like Mike"...
-Terry Crews, who was one of the stars in the movie "White Chicks," "Friday After Next"...
-Sugar Shane Mosley, former boxing champion
NICHOLAS HAD A VERY NICE DAY
At the end of the evening (midnight) we prayed and gave thanks for another wonderful day loving God, trusting, and believing because each day Love is providing more love and more reasons to be thankful.
March 31, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, March 30, 2006 10:50 PM CST
CLINIC APPOINTMENT WENT JUST FINE
Early morning we were back at LPCH for lab work and examination. Nicholas looks so good and Love is shinning through; the appointment went well. The bone marrow aspirate (BMA) will be performed next Thursday instead of this coming Monday or Tuesday. And Nicholas will not be back at LPCH until then as we will draw labs at home on Monday & Wednesday and deliver to a lab in Lafayette to process (results will be faxed to LPCH and us).
TODAY WENT JUST RIGHT
On the way home from the appointment we stopped at the Lafayette reservoir to simply gaze out, feeling the sprinkles softly falling onto our faces and the wind gently blowing as nature was so very present for our eyes and ears to take in.
Nicholas' late afternoon and evening went just right: talking, playing, laughing, and being together (with two of this three brothers).
NEXT WEEKS BONE MARROW ASPIRATE
Please pray with us, knowing that the miracles we have seen within Nicholas will continue to manifest revealing what we see and sense from Nicholas-Love revealing love, purity, and perfection.
PICTURES
All the pictures from the last two weeks in the hospital have been uploaded onto the third album below, under Links. Please see the nearly two dozen pictures since March 13 depicting Love that is shinning within and around Nicholas. We smile as we see and feel Love; can you sense it?
Also, please click on View Photos as we have changed the three pictures placed there yesterday providing you with another snapshot of the last couple of weeks. (We will place more of the two dozen pictures under View Photos over the weekend; however, seeing them all in order in one sitting really helps to see Love guiding Nicholas through it all.)
March 30, 2006 Blood Counts:
WBC: 0.7
HGB: 9.6
PLTs: 44
ANC: 200 (161)
___________________________
Wednesday, March 29, 2006 11:59 PM CST
NICHOLAS HAD A GOOD DAY
Simply stated, Nicholas had another good day and it is clear to us that Love is purifying his body and shinning through him.
After a visit from friends, who also brought Nicholas (and mom & dad) another favorite-chips and salsa, Nicholas played a little basketball outside and baseball. He really liked playing baseball today and his eye for the ball & swinging of the bat was just perfect!
And last night was absolutely soothing to be able to sleep in our own bed.
PICTURES FROM THE LAST TWO WEEKS WHILE IN THE HOSPITAL
The picture above and the three seen when you click on "View Photos" are just four of many pictures telling a beautiful story of Nicholas following God, the perfect guide, through the last two weeks in the hospital. More pictures will be uploaded tomorrow to this site AND to third album below under "Links."
Do you see Love shinning and operating within and around Nicholas? We see it, feel it, and trust & believe in God's perfect work revealing just that, his perfect work-Nicholas.
NEXT STEPS
1. LPCH Clinic appointment tomorrow (Thursday)
2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6
3. Anticipating blood count recovery, another Bone Marrow Aspirate is being scheduled for Monday or Tuesday of next week to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 29, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, March 28, 2006 6:00 PM CST
NICHOLAS IS OUT OF THE HOSPITAL AND IS NOW AT HOME
Nicholas, well mom & dad too, woke up to good news-we were told that we were going home this afternoon. And we are now home!
NOTE: Pictures from the last couple of weeks will be uploaded tonight or tomorrow.
NEXT STEPS
1. LPCH Clinic appointment Thursday
2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6
3. Anticipating blood count recovery, another Bone Marrow Aspirate is being scheduled for Monday or Tuesday of next week to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 28, 2006 Blood Counts:
WBC: 0.8
HGB: 8.1
PLTs: 75
ANC: 288
___________________________
Monday, March 27, 2006 10:28 PM CST
WITH EVERYTHING IN PERSPECTIVE, ANOTHER NICE DAY
Reflecting back on the heart-wrenching and full-body aching medical news form January 18, 2006, we feel that there is really not much of anything that worries us anymore as we keep "life" in perspective with God as the focal point of our lives. We heard the worst possible news on January 18 and as hard as it may seem to be able to bear, we feel a sense of calm and direction with God within and around Nicholas.
Today marks two weeks that Nicholas has been in the hospital (because of a fever and bacterial infection that quickly went away) and we expect blood counts to rise enabling us to go home in the next day or two. Keeping things in perspective, it really is not about the numbers of days in the hospital, blood counts, leukemia, etc. We love, trust, and believe God to guide Nicholas safely through what Nicholas has been navigating since November 19, 2004. It has been that long and our love, trust, and believe in God has delivered us to this day and will deliver Nicholas through the days ahead. And we pray that it will be months and years ahead as further testaments to Love-omnipotence, omniscience, and omnipresense-forever.
Early afternoon, Nicholas received a Platelets transfusion (PLTs were down to 10). This afternoon and evening Nicholas was playing and having fun with the nurses throughout the halls. He was walking great, walk-running so much better, and did lots of "running around" doing things the kids just like to do.
NEXT STEPS
1. An ANC of at least 200 for with some Monocytes so we can go home (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)
2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6
3. Sometime between the end of this week and next week, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 27, 2006 Blood Counts:
WBC: 0.8
HGB: 10.2
PLTs: 10
ANC: 192
___________________________
Sunday, March 26, 2006 10:30 PM CST
AND ANOTHER NICE DAY ALTHOUGH NICHOLAS IS STILL IN THE HOSPITAL
Friends blessed our day with surprises for Nicholas, seemingly old-fashion fun with kids at play, and helpful scriptures to fortify our trust, belief, and love for God.
Through all that Nicholas has faced, you have seen him continually shine. So what is keeping us in the hospital is just his blood counts-waiting for them to increase toward targeted ranges.
NEXT STEPS
1. An ANC of at least 200 for two consecutive days with some Monocytes so we can go home (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)
2. Over the next 5-7 days for the blood counts to recover from the chemotherapy that ended March 6
3. In about 7 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 26, 2006 Blood Counts:
WBC: 0.7
HGB: 10.0
PLTs: 13
ANC: 130
___________________________
Saturday, March 25, 2006 10:25 PM CST
RESTFUL DAY, OUTSIDE PLAY
Nicholas is still in the hospital although he looks great and is doing very well. He rested all morning and a little in the afternoon. Early evening we took him outside on the patio for fresh air and gazing at the clouds in the sky with the cool breeze on our faces. Then he went onto a courtyard outside of the hospital for some play with mom & dad.
The outside play: Nicholas received a battery powered foam-disc blaster last night and really liked firing at mom & dad as we tried to sneak up onto him. The courtyard has a waterfall and tropical plants; when Nicholas fired the discs into the air it looked like flying saucers invading a tropical paradise. Although we were outside for a short period of time, Nicholas had a good time-and you know that mom & dad were so thrilled to see him "playing and having fun."
GOD PROTECTING US, NICHOLAS PROTECTING MOM & DAD?
We are so glad that Nicholas has not complained once about being in the hospital during this 13-day stay so far, or talked about going home. However, we just know that it is on his mind and we hope we are able to go home next week. You know, we think Nicholas is aware of so much and that he tries to ease the pain on mom & dad by just navigating through all of "this stuff." At his young age, we know he-too-leans on God and that he can get through all of this stuff with God guiding him. We pray that it can soon be all behind us so Nicholas can just play and have fun without trying to protect us.
NEXT STEPS
1. An ANC of at least 200 with some Monocytes (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)
2. Over the next 7 days for the blood counts to recover from the chemotherapy that ended March 6
3. In about 7 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 25, 2006 Blood Counts:
WBC: 0.6
HGB: 10.0
PLTs: 14
ANC: 168
___________________________
Friday, March 24, 2006 11:59 PM CST
SNAPSHOT OF THE DAY
-The doctors are NOT CONCERNED WITH THE BLOOD COUNTS BEING LOW, relative to the time period since the last chemotherapy. Note: You may remember that when we had the first of the two rounds of a "modest" chemotherapy regimen in January his counts did not recover for 23 days, his ANC was just as low, and Nicholas was not in the hospital during the time the counts were recovering. However, because Nicholas had the fever March 13 and the more chemotherapy administered can slow things down (so to speak), the doctors want to keep a "closer eye" on Nicholas. Today is the 18th day since the last chemotherapy.
-Nicholas will be IN THE HOSPITAL OVER THE WEEKEND and after Monday's blood counts are determined we will have a conversation about going home. (Remember, after the counts recover a bone marrow aspirate will be performed to check the marrow.)
-If going home was based on how well Nicholas looks and how well he is physically doing, we would be home, home, home! NICHOLAS IS DOING JUST FINE AND WE PRAISE GOD for this blessing.
-"Books-A-Live" this afternoon so more INTERACTIVE EDUCATION AND FUN on the computer.
-Walk on the patio with a gentle mist falling. And in the sky NICHOLAS SPOTTED A RAINBOW. Like most of us remember, a pot of gold is at the end of the rainbow and that was the first thing Nicholas asked about. "Lets go to the end for the pot of Gold!"
-Nicholas was treated to one of his favorite dinners, Japenese food. FRIENDS Annette and Marialena knew just what Nicholas wanted: Shrimp tempura, California rolls, and Edamame. And mom & dad were treated as well, not just to the satisying dinner, to really nice conversations that enabled us to seemingly "get away" from the hospital.
-Have you heard about the PS2 game called "Guitar Hero?" It includes a modified guitar and you hold the keys and stroke the guitar like a real one to play a variety of songs. One of the nurses brought it in to the hospital for an older patient, and NICHOLAS WAS FORTUNATE TO GET TO PLAY IT.
PICTURES: Like several pictures over the last 12 days during this hospital stay, a picture of Nicholas playing this guitar will be posted after we get home from the hospital.
March 23, 2006 Blood Counts, at 9:10 PM:
WBC: 0.8
HGB: 12.8
PLTs: 16
ANC: 110
___________________________
Thursday, March 23, 2006 11:39 PM CST
KEEPING NICHOLAS ACTIVE WITH "FRESH" THINGS TO DO AND SURROUNDED BY GOD
All of this leukemia stuff is simply awful to know about and deal with night and day. And it is not easy to put aside all of the medical stuff; however, we just keep on praying, trusting, believing, and living our lives for God. In Him we put Nicholas' life and in Him we know there is His love forever, guiding and shielding Nicholas. We constantly pray for this truth to continually manifest in Nicholas because it is His word!
Nicholas awoke to "Books-A-Live" at his door to start his day out in an exciting way. He just loves doing things on the computer. After lunch Nicholas and dad had several bouts of boxing although Nicholas, leveraging what he has learned about karate and sword fighting, integrated those types of moves with his boxing. His hand and eye coordination really made it hard for dad.
Nicholas and mom visted another patient, playing games and sharing conversations. Nicholas loves time with mom so very, very much (more than one would naturally expect).
This evening we went for a 2-hour stroll out of his room and off of his floor: On the hospital roof top path, in the water-fountain court yard, and just being outside of the hospital is where we spent the time. Looking at humming birds, planes, clouds, people, and ourselves in the moment. We are so grateful that Nicholas' days have meaning (it seems like they do to us and we pray that they do to him), that he is not bored, and that he expresses heartfelt joy. With our focus being on living for God, we trust Him to deliver Nicholas free from anything contrary to Him-it is His word.
STILL IN THE HOSPITAL, DISAPPOINTMENT WITH THE ANC
After yesterday's ANC of 260, we were praying for another 200-plus ANC today so we could prepare to go home. It appears we will be in the hospital through the weekend. However, Nicholas blood counts (including ANC) are where the doctors would expect after coming off the recent chemotherapy.
Today's ANC had dropped to below 190 and Platelets down to 17 (after this evening's blood draw and counts are known there may be a Platelets transfusion tonight or tomorrow morning). So, we are just putting aside the numbers and praying for love to see us through-God's love and His guiding of the doctors and mom & dad's hearts and minds.
NEXT STEPS
1. An ANC of at least 200 with some Monocytes (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)
2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6
3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 23, 2006 Blood Counts:
WBC: 0.6
HGB: 10.9
PLTs: 17
ANC: 190 (we were told it is closer to 140)
___________________________
Wednesday, March 22, 2006 11:33 PM CST
GOOD DAY AND EVENING
Nicholas slept the early part of the day and awoke to a surprise game brought in by his nurse. It was a table-top pinball machine that had the lights and sounds of a regular pinball machine. An added treat was it was a Spider-man pinball machine. This was lots of fun for Nicholas.
This evening Nicholas took a walk in the park-well the roof top patio where there are lots of trees, plants/flowers, and views of the surrounding mountains as well as a soothing sunset this evening. And then he went out to eat-well to the Stanford Hospital Market Square where he selected and ordered his dinner to eat in his room. While it may seem nice to have diner brought "to" you, it seemed like a very good treat for Nicholas to stroll out to get his dinner. His sense of being "out" and even selecting a surprise treat for mom and buying something for dad with his own money was so pleasing. It was an absolute joy for mom & dad seeing Nicholas enjoy the evening.
What also helped to make the day good was the blood counts and the related ANC above 200 as referenced in yesterday's journal. And he has a couple of Monocytes. So another surprise is that if tomorrow's blood counts show an ANC above 200 and there are several more Monocytes, Nicholas may go home by Friday evening.
Because Nicholas' Hemoglobin (HGB) was low, a Red Blood Cell transfusion was given tonight.
GOD, WHO WE NEED RIGHT NOW IS YOU
We continually feel and see blessings within and around Nicholas and unquestionably we are so grateful for God's love. And while we express our appreciation for these blessings, including all of you who are directly and indirectly "with" Nicholas on this journey, we know that who we need right now (always and forever) is God. We have said it before and will always and forever need God in our lives. We cannot do any of the things we are doing for Nicholas by ourselves.
We do not see all that is going on as mind over matter; we see it as God's love over matter and anything else contrary to love for He is omnipotent, omniscience, and omnipresent!
NEXT STEPS
1. An ANC of at least 200 with some Monocytes
2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6
3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 22, 2006 Blood Counts:
WBC: 1.0
HGB: 7.6
PLTs: 31
ANC: 260
___________________________
Tuesday, March 21, 2006 11:48 PM CST
STILL IN THE HOSPITAL, A WATCHFUL EYE
The doctors are focusing on "quality of life" for Nicholas so if we felt really strong about being home now they would work it out. However, with Nicholas still being neutropenic (below normal ability to fight infection) and coming off of last weeks bacterial infection they want to keep a watchful eye on him.
GOAL TO GO HOME: An Absolute Neutrophil Count (ANC) of at least 200 and some Monocytes (definition below) which would indicate bone marrow recovery from the recent chemotherapy. So we expect to be in the hospital through the week and possibly the first part of next week.
MONOCYTES: A type of white cell that represents about five to ten percent of the cells in normal human blood. The monocyte, along with the neutrophil, are the two major microbe-eating and killing cells in the blood. When monocytes leave the blood and enter the tissue they are converted to macrophages. The macrophage is the monocyte in action and can combat infection in the tissues, can ingest dead cells (scavenger), and can assist lymphocytes in their immune functions.
We thank God for Him being the greatest watchful eye and guiding hand always at work for Nicholas (as Nicholas, mom & dad work to work for Him).
GOOD DAY
Nicholas woke up and began his smiles and playfullness as Kaeli (BMT buddy) came for a visit. Then Child Life visited Nicholas, as always, and Nicholas played card and board games with Kristen. And this evening Nicholas visited another patient, Camilia, and spent time playing and cheering her up. (Remember, Camilia is the 12-year old that Nicholas made some art work for last week to help cheer her up.)
And for Nicholas' general development, we are so grateful that Language, Math, and Physical activity along with other curriculum is being achieved in a variety of ways leveraging the situation facing Nicholas. LANGUAGE, he has been expanding his language as he engages with patients, nurses, doctors, and others. MATH, well, you have seen money in his hands in many photos and it has been a very good way for us to teach math to Nicholas. PHYSICAL ACTIVITY, day and night mom & dad interact with Nicholas in ways that get him "moving."
Mom & dad are focused on Nicholas. As mom says, "It is all about Nicholas." We know that happiness cannot be taken away by anything because happiness comes from God; and we pray day and night thanking God for allowing mom & dad to help create happiness for Nicholas.
NEXT STEPS
1. An ANC of at least 200 with some Monocytes
2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6
3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 21, 2006 Blood Counts:
WBC: 0.9
HGB: 8.8
PLTs: 42
ANC: 100
___________________________
Monday, March 20, 2006 10:58 PM CST
REJOICE, REJOICE, REJOICE, AND REJOICE AGAIN
Results of the second CT Scan performed this evening reveal, well, does not reveal much of anything-rejoice! The report is they are not sure anything, or nodule, was there on last weeks CT Scan as it is clear now-rejoice!
They are saying that it could have been an infection that was clearing and is clear now. Or, it could have been blood vessels clustering and forming that are resolving on their own. They will monitor via future scans. Well, really, "There is no spot where God is not!" We are rejoicing tonight and so thankful for love's manifestation.
HE IS ALWAYS THERE!
So we cannot help but think, what if there was something there now. Would that mean that God is not there taking care of Nicholas? We say no, God is always there taking care of Nicholas and knowing what he needs even before the doctors. In God's speed will things be done and as hard as it is to continually be/show patience for Nicholas as well as ourselves, we trust God and feel His presence.
We do wonder why this journey is taking so long! And we trust God and what His plan is for us. We will continually listen for His voice and follow Him.
NICHOLAS AND GOING HOME
Wow, Nicholas is simply doing GREAT. He is doing just about all the things a child loves to do (and some things many children do not like to do), although we are still in the hospital. Today, it was like a tag team for mom & dad switching off "playing and having fun" with Nicholas.
There are now just two medicines being administered via IV: Cyclosporine and Cefipine (antibiotic). Because of the antibiotic and watching of the liver numbers, coupled with Nicholas' blood counts that have not yet recovered from the recent chemotherapy we are still in the hospital. However, discussions are underway about going home sooner than later because we can administer the IV medicines at home-and Nicholas is doing great. Last time it took about 23 days for the counts to kind of recover (however there were no fevers or infections in the picture) and we are only 14 days post chemotherapy this time (and he has been without fever and the antibiotics are taking care of the bacteria).
Thank God for even the small miracles because THEY ARE MIRACLES and we know that Nicholas is blessed (as hard as it may seem to understand).
March 20, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, March 19, 2006 11:32 PM CST
ANOTHER CT SCAN TOMORROW (Monday)
The final report of last Tuesday's CT Scan reveal a 3mm spot at the middle of the right lung. It could be fungus or it could be nothing; another CT Scan (lung and sinus) will be performed tomorrow. It the spot is still present a lung biopsy may be scheduled.
We remember something taught our older boys years ago and shared with Nicholas even before all of this leukemia and bone marrow stuff-"There is no spot where God is not!"
Like the doctors said today, Nicholas looks great so there is nothing clinically significant prompting action right now because he is not having any fevers and he bounced through all that was going on when he was admitted last Monday. More importantly, there is no spot where God is not and His word IS true-Nicholas is made in the image and likeness of God so nothing contrary to love and purity has power over Nicholas. We trust and believe His words as witnessed throughout this entire journey.
ALWAYS SOMETHING ELSE
We do, we do trust and believe and we try not to worry about things, however, we do worry at times. We pray for God's help and we pray thanking God for the continued blessings of love manifesting in Nicholas.
LOVE
This afternoon Nicholas was out on the hospital patio enjoying the weather. He saw buds on trees and said, "Look mom, they are going to get leaves soon!" There are lots of squirrels on the patio and Nicholas saw some buds of acorns popping up. Remember a few weeks ago when Nicholas found an acorn planted by a squirrel in one of mom's planters at home? Remember, he replanted it and named it "Squirrely."
Love is simple and love provides everything your heart desires. Our love does its job and we trust God's love as it is His word.
And Nicholas had a nice treat this evening, KJ (another BMT buddy) came to visit Nicholas in the hospital with his dad, Ken. What amazing friendships that have developed along this journey (we are so thankful).
HOME SOON, WE HOPE
Tomorrow (Monday) it will be one week in the hospital and we are hoping to go home sometime this week. Please, please, please continue praying for love's manifestation in Nicholas and that "there is no spot where God is not."
March 19, 2006 Blood Counts:
WBC: 5.0
HGB: 9.0
PLTs: 73
ANC: NA
___________________________
Saturday, March 18, 2006 10:01 PM CST
STILL IN THE HOSPITAL, STILL HAVING NICE DAYS
The last two nights Nicholas has not slept all through the night: Just could not fall asleep Thursday night and last night his rear was bothering him. Knowing this and knowing that he has been having really nice days is amazing.
The pain in his rear has eased up dramatically-yeah! And he no longer is worried about having to go to the bathroom as he was during the week.
If you did not know about all that has been going on over the last 484 days, you would not know! And this gives us so many reasons to be thankful for God's love. One day at time, with one love all the time-God.
While Nicholas rested a good portion of the day, he was so lively and full of spirit. In fact, the nurses and assistants were commenting about seeing all aspects of Nicholas they remembered checking into LPCH 484 days ago, not just the him continually lluminating with rays of sunshine that warms your heart, with strength, energy, enthusiasm, joy, & endless passion for caring about others.
March 18, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, March 17, 2006 11:43 PM CST
DIFFERENT KIND OF VISIT THIS MORNING
This morning Nicholas woke up to a visit, not from a friend, not from a celebrity-type, but from a husband/wife considering donating funds to LPCH. This couple came in with the doctors to see a flavor of the work going on at LPCH from a parent/patient perspective. You know Nicholas, he was okay with the visit as he likes being around people.
ARRAY OF MUSIC AND FUN
This afternoon the Nieuwsma girls came for a visit with their mom and they brought their harp. Yes, their harp which is really big (and beautiful). Each of the four girls performed several songs for Nicholas, well, for mom & dad too. It was absolutelty beautiful and there was a beautiful surprise-Nicholas was sleeping while they were performing (and a couple nurses came in to hear) and suddenly rolled over and said..."Boo!"
The sound from a harp is a wonderful way to sleep and wake up. PICTURES AND A VIDEO: Again, when we return home from LPCH we will upload pictures taken during our stay-there are some fun, exciting, and natural pictures to share. Oh, and Nicholas sat at the harp and performed-for the first time-a soothing piece of music created from his heart and we have it on video. People say that any sound from a harp is beautiful, well we are sure believers of that notion.
And the rest of the day: basketball with mom & dad for fun physical activity in the room, wrestling-with mom (not dad), more drawing, Books-A-Live, and an evening visit from Kaeli (BMT buddy) and her mom, Theresa, provided time for board games. Yes, Monopoly Junior was one of them!
LIVER NUMBERS ARE IMPROVING
The liver numbers that have been dramatically high and out of range the past 1 1/2 weeks, are coming down. Switching to Cyclosporine via IV is helping to get the Cyclosporine level in a theraputic range to combat liver issues. The target range is about 250 and today it was up from 33 to 100.
And Nicholas looks GREAT, thank God-truly thank God-for our sunshine shining!
NEW BACTERIA IDENTIFIED
Another culture was positive so in addition to the Gram Negative Rod Bacteria-Klebsiella Oxytosa identified yesterday, the second bacteria identified is Panotoea Agglomerans. The intervention was another antibiotic, Cefipine, added today. The Ceftaz that has been administered since this hospital stay was stopped so now the two being administered are Amikacin and Cefipine. Note: These bacterias could have come from Nicholas' own body as being severly immune suppressed (because of the recent chemotherapy) things that are normally in our bodies can cause problems for immune suppressed people.
And we will say it again, because we see it again, Nicholas looks GREAT and had a very good day.
With all of the things that are going on medically, we will say it again here too, we are so glad to have God with us guiding the way. It is so hard not to be fearful; however, with God we know that following Him, He will take the fears away.
SOMETHING FROM NICHOLAS
Sorry for this heading, anyway, remember the pain Nicholas was having during bowel movements last weekend? And remember this week a new medicine, Fentanyl, was made available to Nicholas that could QUICKLY provide relief. This evening when Nicholas had to have a bowel movement Fentanyl was infused and his bowel movement was okay in terms of the pain. And Nicholas said, "Mom, they should give this to all the kids because it really works!" And, and, and we have to say here-through everything going on we know that God really works and He is all that we really need. And we are thankful for what He provides...
GOING HOME IS PLANNED FOR NEXT WEEK
Well, we are now planning to go home sometime next week. Hoping that it will be the earlier part of the week. With the blessings of friends, caring and engaging hospital staff, and God providing for mom & dad, Nicholas is doing okay on all fronts so we will be get through it all praying for more wonderful news to further share God's wonderful work in Nicholas.
March 17, 2006 Blood Counts:
WBC: 0.4
HGB: 8.7
PLTs: 119
ANC: NA
___________________________
Thursday, March 16, 2006 10:56 PM CST
WE NOW WE ARE BLESSED, AND THIS SITUATION "STINKS"
Thankfully, Nicholas is still without fever and today the specific type of the Gram Negative Rod Bacteria was identified: Klebsiella Oxytoca. And it is treatable with two, Ceftaz and Amikacin, of the three antibiotics already being administered (so the third one was discontinued today).
It stinks, all of this "leukemia and bone marrow stuff" stinks. We trust and believe in God, his love for Nicholas as well as mom & dad; and with our prayers to God we pray that He is okay with us saying that all of this stuff stinks. It is so hard, every day although we know that we are blessed with Nicholas' smiles and the amazing way that with God he finds ways to navigate it all while loving engaging with others. It is just that 24/7 and all of these days and months, it stinks to have to fight, fight, fight! We wish we could have the battles just by ourselves, freeing Nicholas from it all. However, we know that it is Nicholas fight and we are thankful that God has allowed us to be so present with Nicholas, and for God being MORE THAN present with Nicholas and mom & dad. In fact, it is God's fight so we know that Nicholas will be alright.
So, once again, Nicholas had a really good day interacting with the nurses and doctors at the nurse's station: he was playing, talking, sharing, and creating (he colored Easter eggs). Again he was thrilled to have fun and learning on the computer with a "Books-A-Live" volunteer. And tonight he played Monopoly Junior with one of the nurses. Remember this game involves money and Nicholas is a collector as well as giver of money so he was fully alert, attentive, and active while playing.
And as another day comes to an end, we thank God for the blessings even during times that "stink" to mom & dad. We pray for Nicholas' healing constantly and pray for God's love to continually provide us with all that we need to "be there for Nicholas."
We are hoping to be able to go home this weekend.
March 16, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, March 15, 2006 11:19 PM CST
STILL IN THE HOSPITAL AND "SEEING" REASONS TO SMILE
Being home, outside, and going where you want to go is so wonderful and we, certainly, know and appreciate those seemingly expected things in life. There are always "sayings" like "Smile" or "Have You Hugged Someone Today?" These, too, may be things that are seemingly expected and we wonder if all of us in general really know the love & energy generated by a simple smile or hug.
Well, we are still in the hospital and we are smiling just seeing Nicholas smiling. We are where we are and our hearts allow the love & energy to do anything and everything for Nicholas-our rewards are his smiles which is just about the greatest gift. We are where we are and Nicholas had a very nice day:
-Nicholas and mom & dad had warm, loving conversations with a hospital Reverend we met during Nicholas' BMT. Remember shortly after Nicholas was diagnosed back in November 2004 and he would awake from being sleep, or pretend to be asleep, and say "BOO!" to the staff who were quietly approaching him? Well, even the Reverend received a BOO! wake up call from Nicholas today.
-Visit by KJ and his dad, Ken (you know KJ, the BMT patient Nicholas befriended while at the Ronald McDonald House).
-Games and painting with mom.
-A little physical activity with dad.
-Stroll in the hospital.
-Dinner and a movie on the window-bench seat. Oh, and of course popcorn. The movie was "Catch That Kid" which was "As much fun as Spy Kids and more fun than Agent Cody Banks!" Throughout the movie some of the staff joined Nicholas for a few scenes. Part of the story line was about one of the kid's father who was in a hospital-and the daughter with two other kids created a way to do everything they could to get the father the medical care he needed.
NOTE: As hard as all this stuff is that Nicholas is facing, we pray knowing that "God, who we need right now is You!" And we know that He is here with us to do everything for Nicholas in God speed. So without the seemingly expected things taken for granted, we are so grateful for the simple smiles from Nicholas that light up our hearts and our world.
-Games with some of the nurses.
MEDICAL SNAPSHOT:
-No fevers since yesterday (Tuesday) around 3:00pm.
-Tomorrow we expect to learn the specific type of Gram Negative Rod Bacteria for its linking intervention to take place.
-No update to the findings of last night's chest x-ray, it was clear (good).
-CT Scan findings are that the base of the intestines at the colon is inflamed which appears to be causing the severe pain during a bowel movement. A much stronger medicine, Fentanyl, is now on standby to be administered right before a bowel movement (it is fast acting and does not stay in a person's system long).
-Two liver numbers are dramatically high, out of range and they started to climb last Tuesday. However, other liver numbers are moderatly high, out of range. The doctors believe that it could be liver GVHD, and the Cyclosporine medicine to combat it is not at a theraputic range. For some reason the oral dose is not staying in Nicholas' system so tonight we began administering Cyclosporine via IV. (Remember, this was the case shortly after the BMT.)
Note: Infection could cause the liver issue. Good news, the CT Scan shows that nothing is abnormal with the liver.
-Platelets (PLTs) transfusion will be infused about midnight.
-Low blood counts are expected in general; remember, medically it takes about 2-3 weeks for the counts to recover after chemotherapy and today is just the ninth day since the last chemotherapy regimen.
God, love is all we need-miracles happen and we pray for miracles in Nicholas to continue.
March 15, 2006 Blood Counts:
WBC: 0.3
HGB: 9.1
PLTs: 15
ANC: NA
___________________________
Tuesday, March 14, 2006 11:59 PM CST
SNAPSHOT OF THE DAY
-One of the cultures show a positive reading for Gram Negative Rod Bacteria. So a third antibiotic, Amikacin, was added this morning. We will not know the specific type of this bacteria until probably Thursday as analysis of the culture continues. (October 12, 2005 and November 14, 2005 this bacteria surfaced and we are so grateful the specific types were treatable.)
-When Nicholas woke up today after noon, he was alert, very active, very playful, and so loving. (For those of you who have been around Nicholas you know that the words "so loving" are absolutely the right words to describe Nicholas regardless of the roller coaster ups and downs.)
-Remember "Books-A-Live" that have been a wonderful part of Nicholas stays in the hospital? Well, when one the volunteers walked into his room and Nicholas saw her, he sat "fully" up and clapped his hands. He was so happy to see the PC and interactive & educational games/programs for him. Nicholas and the volunteer, Cheryl, always have lots of fun. PICTURES of their smiling and engaging faces will be posted when we return from the hospital.
-And do you remember Child life engaging with Nicholas during hospital stays? As always, they were right there for Nicholas in ways that he really enjoys.
-"Engaging" is another word that you have read (or seen) in Nicholas with the staff at all levels: assistants, nurses, nurse practitioners, and doctors. And Nicholas was so, so happy to see all three of his nurse practitioners visit him today: Lynn, Karen, and Lizzie. Blessed, blessed, blessed, blessed-we know that we are blessed with all of these great relationships as they not only make Nicholas feel so completely comfortable, they provide an absolutely great environment for mom & dad.
-Pleasantly, a few times it was like a parade today in terms of visits from the staff. AND we are so grateful for their proactive attention and care.
-A CT Scan of Nicholas' stomach was performed this evening to help identify a cause of the very severe pain Nicholas has during bowel movements. The preliminary findings are not conclusive, maybe there is slight inflamation at the base of the intestines. Official results will be known tomorrow.
-Also, a chest x-ray was performed because a nurse detected a little wheezing. The preliminary findings, chest is clear (a good thing).
-Late evening, Nicholas was again very active.
-Nicholas spent time at the nurse's station doing some work, playing, and then he stopped to create a card for a 12-year old patient who has been having a really, really hard time. Nicholas said he was creating the card to make her happier! He gave it to her and she smiled.
-Fevers: Since being admitted with a fever yesterday, Nicholas has had sporadic fevers. However, the last fever today was at 3:20pm and now before midnight he is without fever.
-There are so many things being monitored, assessed, and interventions discussed. AND we just feel God's presence with us and all around Nicholas-even in the conversations with the staff. Naturally, we are so grateful for God's love and we know that to get through all of this stuff we have to go through it following Him. We do!
-WHEN WILL NICHOLAS GO HOME: Now, the earliest may be Friday. And within a couple days after getting home we should be able to post pictures taken duing the last two days in the hospital. You may not believe your eyes when you see Nicholas, a beautiful sunshine. Then again, following Nicholas' journey you have seen the sunshine come through some very, very cloudy moments. And we thank God all day and everyday as we try everyday to live following Him-trusting and believing.
March 14, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, March 13, 2006 10:24 PM CST
IN THE HOSPITAL WITH A FEVER
While the normal process of vital signs were being taken at LPCH before the blood lab draws and examination, Nicholas' temperature reading revealed that he had a fever. The process contracting a fever means Nicholas will be in the hospital for at least 48 hours and he was admitted—we are back in the room where Nicholas received his BMT just about a year ago. The process with a fever is blood and urine cultures to try to identify any virus or bacteria; and the earliest we could go home will be Wednesday night.
Antibiotics Ceftaz and Vancomycin were administered. These two antibiotics provide broad coverage as an intervention to the cause of the fever until the cultures grow out to pinpoint any virus or bacteria, and knowing a cause an appropriate antibiotic will be determined to fight it.
AND BLESSINGS CONTINUE
As hard as it may seem to say or hear, once again, we know that we have been blessed because Nicholas has not had a fever since December 25, 2005 and the doctors have been surprised at how well he has been doing because it is common for patients in Nicholas’ medical situation to contract fevers. A few months may not seem like a long time without having a fever, however, understanding the medical situation it is simply amazing that he has remained without fever and without having to be hospitalized for other issues.
WE HAVE REASON TO BE THANKFUL
We are thankful, thankful that Nicholas has been able to shine through some very, very tough hours (not moments) with pain and the overall medical stuff that have been going on over the last six months as well as this weekend. And we continually give thanks to God for He is the source of Nicholas' “light” and the source of everything good in and about Nicholas. And we pray for God’s help in taking away our fears because in Him, nothing should we fear because He is the source for all that we want and need. And as MUCH as we LOVE Nicholas, we know that God loves Nicholas and mom & dad so, so much more—we are blessed with His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for information about the overall next steps.)
March 13, 2006 Blood Counts:
WBC: 0.5
HGB: 10.5
PLTs: 58
ANC: NA
___________________________
Sunday, March 12, 2006 11:59 PM CST
HAPPY, SAD, TEARS, PRAYERS, AND JOY
We have talked about all of this leukemia stuff being like a roller coaster and a slippery road. Like the last couple of days, today is described as happy, sad, tears, prayers, and joy—yes, thankfully, joy! Our emotions have been up and down and we are so thankful to lean on God over, and over, and over again throughout the days.
We keep saying that we know we are blessed and each day “we know we are blessed” as even on a roller coaster of emotions each day there has been joy. While we pray throughout each day, and fully express our love to Nicholas continually, our prayers when Nicholas is in pain and/or sad is where we lay our hearts, minds, and all that we are to God.
While we have generally been afraid more than ever the last couple of days, more than ever we lean on God, His love, His omnipotence, omniscience, and omnipresence which manifests love in Nicholas and in mom & dad. We are afraid because we “do not know” AND while it is hard because of all that is going on, we know that with God, He will lovingly shield Nicholas and guide us all. And in God we trust and believe.
LOOK, FEEL, AND SEE…
The picture of Nicholas above is purely amazing to us in terms of all that Nicholas has gone through today—and it is a picture reminding us that trusting and believing in God allows miracles to manifest...
NEXT STEPS
1. LPCH Clinic tomorrow (Monday) for blood lab work and examination
2. Next 1 1/2 -2 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
3. In about 2 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 12, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, March 11, 2006 11:59 PM CST
LONG FRIDAY NIGHT, LONG SATURDAY MORNING
Referring back to Friday night’s journal, Nicholas had pain sporadically from 10:00pm Friday until 5:20am Saturday. At that time we gave him some Ativan and he was able to rest without being awaken because of pain.
However, two hours later we had to get him up and off to LPCH Day Hospital for Platelets and Red Blood Cells transfusions. Around 1:30pm, during the nurses regular follow ups throughout the transfusions, they walked into the room and were greeted by a pleasant, lively surprise. Nicholas was now awake, joyful, and lively playing card games (Uno and Wig Out) with mom and his cousin, Mikayla. What a blessing to see his spirit beautifully filling the room.
The transfusions were completed and thankfully there were no issues, we left the Day Hospital around 2:30pm.
CONVERSATIONS OF LOVE NEAR AND FAR
While in the Day Hospital, for mom & dad, it was a blessing to have conversations about God and “all of this leukemia and bone marrow stuff” with another parent, Ely, we met along Nicholas’ journey and Ely and Gigi’s son, Matthew’s, journey. And this evening it was so helpful to have a conversation with a friend that was far away. We were reminded that our job is only to love Nicholas, and God’s job is loving Nicholas as well as to see Nicholas through EVERYTHING.
Nicholas has had pain during bowel movements throughout the night, together we have been in prayer constantly throughout the night, and trusting and living the way God has planned is really all that we need to guide everything in front of Nicholas. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we do turn everything over to God and will continue to follow Him through whatever confronts our path. With God there is truth—the spirit and love of God operating within and around Nicholas and the result…harmonious and good. We wish we could take all of what seems to be hard or bad away from Nicholas…and praying together with love at the heart of our thoughts and actions is what we continually do.
NEXT STEPS
1. LPCH Clinic on Monday for blood lab work and examination
2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
March 11, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, March 10, 2006 11:14 PM CST
SEAFOOD, FRIENDS, COUSIN, AND FRIENDS
Remember the photos of the seafood meal prepared in our home by Soha on November 11, 2005? Well, Nicholas more than remembered it today because Soha came over and prepared it again—Nicholas had crab, shrimp, and salmon and it was wonderful.
And then Nicholas had a fun-filled afternoon with Soha’s girls, Neda and Hana. Then his cousin, Mikayla, came over for the evening. And then family friends, Greg and Judy, came over with their two girls, Amanda and Cassidy. So Nicholas’ fun-filled afternoon continued through the evening: laughter, running, and silliness filled the air and our hearts. The day was truly beautiful to see, for Nicholas.
Remember, we talked about Nicholas being directed and guided by God, not by numbers or blood counts. This is important to us; and seeing the energy in Nicholas all day is a beautiful testament to his strength coming from God in spite of “numbers.” We say this because seeing him and the energy he displays, most people would not imagine that medically he needs to have a Red Blood Cells transfusion (tomorrow, Saturday).
PAIN, TEARS, AND PRAYERS THIS EVENING
And tonight there was a specific problem for Nicholas, to say it directly, his rear-end was extremely sore probably because of chemotherapy side effects including extremely low Platelets. We are praying and working so hard understanding God’s omnipotence. As much as it hurts mom & dad, we know that our pain was nothing compared to Nicholas’ pain. Hearing his piercing cries and calling out to God pierces our hearts with pain, and we joined him in prayers to God…
Tonight we were reminded of the song, “He’s My Son,” that was included in the January 6, 2006 journal (please refer to that journal for the words and the link to paste into your browser to hear the song). Nicholas hurts, we hurt, and we pray for the miracle of life and reward of living without pain—Nicholas continues to do more than “his part” in all of this and we know God loves him so much that we pray for this realization to be manifested in every conscious thought and feeling for Nicholas. We love Nicholas.
NEXT STEPS
1. LPCH Day Hospital tomorrow morning for PLTs and RBC transfusions
2. LPCH Clinic on Monday for blood lab work and examination
3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Thursday, March 9, 2006 11:09 PM CST
BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.
His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.
NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.
And he had an overall really nice day—love stops everything contrary to it!
QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.
A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the discoloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.
NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions
2. LPCH Clinic on Monday for blood lab work and examination
3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 9, 2006 Blood Counts:
WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA
___________________________
Thursday, March 9, 2006 11:09 PM CST
BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.
His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.
NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.
And he had an overall really nice day—love stops everything contrary to it!
QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.
A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.
NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions
2. LPCH Clinic on Monday for blood lab work and examination
3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 9, 2006 Blood Counts:
WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA
___________________________
Thursday, March 9, 2006 11:09 PM CST
BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.
His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.
NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.
And he had an overall really nice day—love stops everything contrary to it!
QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.
A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.
NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions
2. LPCH Clinic on Monday for blood lab work and examination
3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 9, 2006 Blood Counts:
WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA
___________________________
Thursday, March 9, 2006 11:09 PM CST
BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.
His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.
NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.
And he had an overall really nice day—love stops everything contrary to it!
QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.
A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.
NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions
2. LPCH Clinic on Monday for blood lab work and examination
3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 9, 2006 Blood Counts:
WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA
___________________________
Wednesday, March 8, 2006 10:11 PM CST
ANOTHER VIBRANT AND LOVING DAY
From the beginning to the end of the day, Nicholas was cheerful and love was expressed from him and to him throughout the day. This evening, bundled up toasty warm, he was outside swinging on his swings. As it started to sprinkle the fun and laughter was in full flight as was Nicholas on the swing—like all of us at all ages, he loves the motion and the games played while swinging. On the swing is one of the places his uninhibited smiles simply warm our hearts.
(Have you swung on a swing this week, pushed your child or a child on a swing this week, or pushed your love on a swing this week? You know, we think the next time Nicholas’ grandparents (mom and dad’s) are visiting we will have to have them swing with Nicholas—the smiles and feeling of love all around will be so wonderful. We cannot wait to see Nicholas’ smiles at that time!)
As we are completing this journal thinking about the moment, the night, and tomorrow, we are truly living in the moment but with the thought and prayers of all of our tomorrows knowing that God will keep us strong and on His path. So while we do not know what our “tomorrows” will bring, living in the moment with God is so fulfilling—we pray for more and more moments loving and living with His love. And thankful for the many teachings being learned through Nicholas (Nicholas gives us gifts of love everyday along with the lessons)
NEXT STEPS
1. Blood lab work tomorrow (drawn at home and delivered to a local lab)
2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday
3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
4. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 8, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, March 7, 2006 11:59 PM CST
VIBRANT, LOVING, LOVEABLE are words that describe Nicholas today. And lately, thankfully, they are words that describe him most of the days. During and after this afternoon’s LPCH clinic appointment Nicholas was, engaging! He really enjoyed talking with the staff at LPCH and we are so thankful that they “show up” in a more than caring way. When in the clinic, Nicholas and mom & dad are blessed to have such warm, caring, and loving conversations with the staff—yes, loving, because the level of attention and care is truly loving. And it is always pleasing when staff from 2North (where Nicholas stays when he is hospitalized) regularly come to the clinic to “engage” with Nicholas during our appointments.
CLINIC APPOINTMENT today was okay. Although his blood counts are dramatically low, there were no significant surprises with the blood counts or chemistry. There are a couple of things closely being monitored because of the low counts and/or counts/chemistry that are out of range. The doctors believe these issues are associated with the chemotherapy just administered. A pleasant surprise was the staff seeing and saying how great Nicholas looks. Aside from understanding all that Nicholas has gone through, he really looks great (as described above) and although we see it, it feels so good that others see it too.
NEXT STEPS
1. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended yesterday
2. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)
3. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 7, 2006 Blood Counts:
WBC: 0.5
HGB: 9.8
PLTs: 56
ANC: NA
___________________________
Monday, March 6, 2006 10:57 PM CST
A NICE, MELLOW DAY
Today was a mellow day and what really felt good was the harmonious feeling that God continues to provide. We are so thankful that Nicholas has the ability to go from a restful period of time to energetic moments. It is like turning on the charm, however, he is just turning on being Nicholas—we know he is blessed and we are blessed with him.
While medically the second round of “modest” chemotherapy also brings about low blood counts and concerns associated with the lower counts, no doubt you have either seen or read these journals realizing Love that has guided & shielded Nicholas along the way.
TOMORROW (Tuesday)
Tomorrow we will be at LPCH for lab work and an examination.
NEXT STEPS
1. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended today
2. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.
3. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 6, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, March 5, 2006 11:59 PM CST
ANOTHER NICE DAY
This past week has brought progress and joy: from last Monday (February 27) with the doctors saying “It is unexplained” regarding how well things have been turning around over the last 45 days, to this past Thursday (March 2) with Nicholas running for the first time since September 2005. And today was another nice day although the fight continues—the prayers and conversations with Nicholas about “all of this leukemia and bone marrow stuff” toward helping him and mom & dad overcome it all.
And a visit by the Nieuwsma girls (and their parents) and your thoughts and prayers along with the guestbook entries were certainly nice things today.
LAST DAY OF CHEMOTHERAPY AT HOME TOMORROW (Monday)
Remember, last Wednesday night we started a second round of a 5-day modest chemotherapy regimen. (Please refer to the March 1 journal if you missed that information.) It has been hard for Nicholas to receive medicine just about every waken hour; and mom & dad are really looking forward to tomorrow at 6:00pm when the 5-day regimen will be over. Then, it will be back to the twice a day administration of medicine he is on.
ALL OF THESE KIDS with leukemia and other life-threatening diseases are heroes—courageous and brave in the face of all facets of its awfulness. We pray for Nicholas and all of these kids to realize the strength through God and His love to overcome it all.
NEXT STEPS
1. Tuesday appointment at LPCH for blood lab work and examination
2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that will end tomorrow
3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love
4. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path
March 5, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, March 4, 2006 10:43 PM CST
QUIET, RESTFUL DAY
Early trip to LPCH Day Hospital for a Platelets transfusion made up the morning and part of the afternoon and Nicholas slept most of the time. It was a quiet & restful morning, afternoon, and evening. However, this evening Nicholas spent time on his laptop and time just playing (you know, making up games out of everyday items and toys).
PRAYING AND CALLING OUT "FATHER" IS SO SOOTHING
A couple times, Nicholas wanted to just talk about things and—of course—we did just that. We are thankful that he lets us know when and what is on his mind so we can approach them together. We are thankful because “all of this leukemia and bone marrow stuff” can have so many things troubling any of us and talking about what is troubling continues the conversation about God’s love and that He “is an ever present help in times of trouble.” It is amazing how calling out His name, just saying Father, provides comfort to our hearts.
March 4, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, March 3, 2006 11:46 PM CST
NICE DAY
Quiet day at home, an evening visit by his friend (Cassidy) along with playtime, and time on his laptop with interactive-fun & educational DVDs made up the day. And as always, soothing conversations with mom and soothing conversations with dad reflecting on good things and prayers made the day complete (well, we pray it helps make the days complete for Nicholas too).
Oh, and several times today Nicholas was so happy to show us his ability to run again.
PLATELETS TRANSFUSION TOMORROW MORNING (Saturday)
Bright and early tomorrow morning we will be back on our way to LPCH for a Platelets transfusion. Blood lab work processed locally (not at LPCH) today revealed that the Platelets were down to 22 (target range is 150-400 and a Platelets transfusion has been performed when they drop into the teens).
LOVE HAS SO MANY WONDERFUL MEANINGS
We asked on previous journals things like: can you see it?, can you sense it?, referring to love radiating and illuminating within and around Nicholas. Love has so many wonderful meanings and with love there is no meaning to anything contrary to goodness. Love can be seen through whatever may seem to be contrary to it! Nicholas looks so good and he has been able to talk about & pray to help face/overcome things that have bothered him (sometimes this is a struggle in terms of understanding why, why, why...). We thank God for His love!
And thank you for your GUESTBOOK ENTRIES, truly they are so lovingly helpful to all of us!
March 3, 2006 Blood Counts:
WBC: 0.7
HGB: 9.6
PLTs: 22
ANC: 410
___________________________
Thursday, March 2, 2006 11:59 PM CST
CAN YOU BELIEVE IT, RUNNING AND JUMPING
Since September 2005 Nicholas has had difficulty trying to just walk, along with all of the other challenges on the path that he has been on since November 19, 2004, since September 12, 2005, and since January 18, 2006 (please refer to the above caption for date correlation). However, through God love has filled our hearts and loving God has continually fueled our lives—especially when the path has had us on a roller coaster and sometimes a very, very slippery road.
Amazingly, tonight Nicholas treated us with another gift…“out of the blue” Nicholas surprised us saying, “I could run, watch!” Off he went walking down the hall, walking faster and faster. Then he began to lift up his knees at that fast pace…and he was running. After a couple of “runs” down the hall he said he could jump too. And he jumped, jumped, and jumped. As mom picked him up and embraced him, dad kissed his forehead. And Nicholas put his head on mom’s shoulder, and smiled.
Another blessing; what a difference loves makes!
FACING NEXT STEPS
Whatever the steps are in front of us, we take each one FOLLOWING God. It is hard, however, we do keep our focus also on the beautiful surprises along the way. Like we said in our November 3, 2005 journal, beautiful surprises are plentiful if we watch and listen, truly take moments to “watch and listen.” On November 3, 2005, like now, the song “Beautiful Surprise” by India Arie comes to mind. Following are some of the lyrics from the song:
“…You are a beautiful surprise
What ever it is you came to teach me
I am here to learn it cause
I believe that we are written in the stars
And I don’t know what the future holds,
But I’m living in the moment
And I am thankful for the man (son) that you are
You are everything I asked for in my prayer
So I know my angel brought you in my life
Your energy is healing to my soul
You are a beautiful surprise
You are inspiration to my life
You are my reason why I smile
You are a beautiful surprise”
And we thank God for Nicholas and beautiful surprises that make Nicholas smile.
Note: Blood lab work tomorrow morning.
March 2, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, March 1, 2006 11:59 PM CST
BONE MARROW ASPIRATE
Today’s bone marrow aspirate (BMA) revealed 40percent blasts (cancer cells) compared to 85percent from the January 18, 2006 BMA. Nicholas’ doctor was “Happily surprised of the outcome” based on the modest approach being taken because medically Nicholas would not be able to handle the toxicity of other chemotherapy efforts at this point. Of course we were praying for complete healing to be revealed; however, medically a reduction of more than half IS progress. And it is not just about progress, it is about the complete healing and the cancer to permanently stay away (it has no place in Nicholas).
AND WE REMEMBER, we know, that numbers do not have any power over Nicholas as we have witnessed over and over again with him. And we remember, we know, that God’s omnipotence, omniscience, and omnipresence is not bound by anything! Our faith, trust, and “believing” remains unmovable—and we thank God for His love of Nicholas that continues to be revealed through Nicholas’ smile, spirit, and passion for caring about others seemingly before he thinks about himself.
What was expected to be about a 7-hour day at the hospital turned into being over 12 hours today and Nicholas slept about 11 ½ hours. During the ½ hour he was awake, he kept pleading…“I want to go home now.” Aside from the BMA, Nicholas had several other procedures including a blood transfusion—he was tired of all the various bags of IV fluids/medication/blood after having gone through the BMA procedure and all that comes with being put under general anesthesia and the recovery process afterward.
BLOOD TRANSFUSION
Nicholas’ blood counts dropped again and today the Hemoglobin (HGB) was down to 7.6, requiring a Red Blood Cell (RBC) transfusion tonight.
NEXT STEPS
Tonight we started a second round of the 5-day modest chemotherapy regimen that was administered January 30 through February 4. This time, however, other than one medicine (Methotrexate, IV) all of it is being done at home versus the first three days we spent in the hospital January 30 through February 1. It can be done at home because this time the doctors are not concerned with what is called tumor-lysis (a breakdown of cancer cells that if the breakdown is rapid can cause other problems) because it did not happen before. It is highly unlikely it would happen this time so the doctor was comfortable with us doing this round completely on an outpatient basis.
After this round is complete, the doctors expect Nicholas’ blood counts to recover 14-21 days later. At that time another BMA will be performed.
Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path.
HOW WE ARE FEELING
We arrived home just before midnight and in some respects, not surprisingly, Nicholas’ energy, enthusiasm, joy, etc. was flowing. For mom & dad, after the long day comforting, supporting, and understanding all that was happening and needs to happen, Nicholas gave us a wonderful gift—Nicholas being Nicholas—that has us feeling so much better. Love comes through!
As mom & dad talked about the path ahead, one thing continues to bounce back and forth right in front of us—we want to get off of this emotional and physical roller coaster! We talked about endurance in a recent journal, and endurance of such an emotional and physical roller coaster that we have been experiencing is more than hard to... We know we are blessed in so many ways, and it is all just so hard. And then we look at Nicholas, we see him experiencing so much turmoil over “all of this leukemia and bone marrow stuff” and we see him smiling and caring about others. We are loved, we are blessed, and we will love and not stop doing all that we need to do for Nicholas. After all, it IS all about Nicholas, just ask him!
March 1, 2006 Blood Counts:
WBC: 1.0
HGB: 7.6
PLTs: 33
ANC: 300
Tuesday, February 28, 2006 11:59 PM CST
SCHOOL DATE AT DVMS THIS EVENING
This evening Nicholas had another “school date” at Diablo Valley Montessori School (DVMS) with his teacher—Ms. Shirley—and Cassidy, Amanda, & Teddy. Although Nicholas vomited twice last night (Monday) and he woke up today (Tuesday) nauseous, vomiting once, he was certainly feeling better this evening and very excited about going to his former school tonight. And the excitement continued at school as his teacher and three friends (above) were all engaged in having fun, friendship, learning, and sharing love.
Love is the right word, again, as DVMS, the students (current and those when Nicholas was there 466 days ago), parents, and the entire student body & faculty have been more than anyone’s wildest dreams could imagine. Throughout this entire journey love has been constant everywhere and at all times—even when we have not known what we needed they have “been there” for our family like so many other friends and our families.
PICTURES from the “school date” should be posted tomorrow night on this site and the third album below under Links.
BONE MARROW ASPIRATE AT LPCH TOMORROW (Wednesday)
Early tomorrow morning we will be on our way to LPCH for the BMA. After recovering in the recovery room, Nicholas will be taken to the Day Hospital for two planned procedures that he has been receiving monthly: IVIG (immune booster) and PENTAMIDINE (administered to prevent pneumonia for patients who are immune compromised) will be administered through an IV. We expect to be at LPCH until approximately 5:00pm.
BEAUTIFUL NIGHT
Nicholas was singing and like his Song of Love playing in the background of this CaringBridge site, he was “playing and having fun” all night long.
NOTE: We are so grateful that the sporadic nauseous feelings over the last several weeks have not materialized into “anything!”
February 28, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, February 27, 2006 11:59 PM CST
LPCH APPOINTMENT: GOOD CONDITION IS “UNEXPLAINED”
The WBC has doubled from last Thursday’s blood draw/analysis although it is still low and out of range. However, the bone marrow aspirate (BMA) scheduled for this Wednesday can still take place enabling us to learn the current status of the marrow. During the BMA, marrow will also be secured and sent off for a Chimerism analysis. Remember, the Chimerism analysis will assess the donor cells at work in the marrow (including the percentage). Note: Please refer to the November 4, 2005 journal for the latest journal talking about Chimerism.
Nicholas has been vibrant and looks good—his skin, demeanor, and overall personal outlook. His chemistry levels (from blood lab work) are looking good—example, levels linked to his liver and kidneys. And love is clearly shinning through in everything within and around Nicholas. Today, one of Nicholas’ doctors said, “It is unexplained” regarding how well things have been turning around over the last 45 days. The doctor said this Wednesday’s BMA should provide some answers and he has an overall good feeling about it. Of course, we give thanks to God for guiding Nicholas as He constantly has guided him along the way through what has been and are troubling times, and what has been and are good times.
TWO MEDICINES STOPPED: Based on Nicholas condition and blood lab work, beginning today we are able to stop two medicines: One, Gancyclovir that we have been administering via IV 3 times per week that was part of the treatment for the CMV that reactivated on December 26, 2005. Two, Actigall which was being administered orally to protect the liver—the doctors will monitor and watch the liver enzymes via blood work to ensure the liver function remains okay. Stopping the Actigall means 2 less pills per day for Nicholas, and boy was he excited about that, as were we. Progress! What a lovely word!
While we do not know what the “tomorrows” will bring, we know that God’s love everyday will bring about love in everything that unfolds. And our feeling regarding what is “medically” unexplained is that we know why—thank you Lord. We pray for God’s guiding of the doctors’ minds and we really appreciate all that they do medically. And we pray that God continues to baffle the doctors, providing more proof for them to “Believe” more and more. We just thank God for His love and pray for all to see His omnipotence, omniscience, and omnipresence.
February 27, 2006 Blood Counts:
WBC: 1.5
HGB: 8.0
PLTs: 58
ANC: 300
___________________________
Sunday, February 26, 2006 11:59 PM CST
FRIENDS, FUN, AND ALWAYS…LOVE
The rain did not stop Nicholas from having a warm, loving day. Friends made up the afternoon & evening and Nicholas had fun! We pause throughout the day knowing that love is actually completing our days, completing our days in terms of truly being “complete” days. We talk about love in these journals virtually every day, not just be hopeful, and not to be redundant, we talk about love every day because we know by seeing and feeling that love always begets love.
Reflecting back over the last 45 days—well actually over the last 464 days—love has brought us to today and we trust & believe in God’s love & words to carry us every day. We could not have imagined the love we have been seeing in Nicholas and the love from all of you, without God’s love.
THANK YOU
All of you who are directly and indirectly engaged with Nicholas and our family make such a positive difference in our lives and we praise God for you. And we just love your guestbook entries for the “circle of love” that they demonstrate—thank you.
LPCH CLINIC TOMORROW (Monday)
Tomorrow we will be in the clinic for lab work (blood counts) and examination to prepare for a bone marrow aspirate Wednesday. While the bone marrow aspirate is scheduled for Wednesday, it is based on the blood counts continuing to rise toward the target ranges. Specifically the WBC needs to rise higher than the 0.8 this past Thursday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…
February 26, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, February 25, 2006 11:20 PM CST
A WALK BRINGS ABOUT LOVE IN MANY WAYS
This evening we took Nicholas on a short walk down the bike trail and up a hill, all within 600 yards of our home (Nicholas walked a little bit once we got back to our court). On top of the hill Nicholas was able to look out from the ridge seeing our house and the surrounding hills making up a valley. There were “whispery” type clouds and it was so nice to see a portion in the western sky that was partially cleared enabling the sun to shine through providing a pretty sunset.
As we walked back onto our court we talked with one couple (neighbors), they walked with us down the court where another couple, and another neighbor came out to talk with Nicholas. We had a very nice walk and the love felt along the way from the scenery, nature, and neighbors was absolutely perfect.
NICHOLAS SAID, after taking a deep breath as we began our walk, “I just love outdoors!” Mom & dad know that Love enables Nicholas to be happy and we thank God because we understand how things could be medically, and how things could be without Him.
NOTE: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than the 0.8 this past Thursday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…
February 25, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, February 24, 2006 11:59 PM CST
KNOWING WE WALK WITH OUR LOVING GOD—PROVIDER AND PROTECTOR
Below are words we have spoke about often, that have helped us along Nicholas’ journey. And it is not just about the words, it is about knowing, trusting, and seeing God’s perfect work through and in Nicholas—AND praying and believing God’s love for all of these kids is all that all of these kids need and have.
“I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God’s presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today.”
“Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me.”
NICHOLAS: SNAPSHOT OF THE DAY
· Waking up happy and playful in bed
· A walk in the front yard feeling the warmth and beauty of the day
· Planting an acorn starting to sprout that was planted in one of mom’s planters by a squirrel—Nicholas named the acorn plant “Squirrelly” and placed the new planter on the picnic table connected to his play structure
· Playing on his play structure—climbing up the climbing structure just about all by himself. AND we thank God for Nicholas’ courage, determination, and actions to try climbing by himself!
· Short walk on the bike trail (a couple houses away from our house)
· Board games
· Making pendants out of Crayola Model Magic (modeling compound)—I think they were made to be given away, however, I do not know to who. He also made little balls that bounce so I think we will be bouncing these around tomorrow, as they will then be dry
· Talking with friends on the telephone
· Watching a swashbuckler type movie
· Medicines administered at noon and midnight
· Love, prayer, and love throughout the day and night
NOTE: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than the 0.8 yesterday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…
February 24, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, February 23, 2006 11:59 PM CST
AND ANOTHER GOOD DAY
Nicholas had another good day although it was a rather quiet day in terms of activities. He looks great, he is full of spirit, and he expresses joy! Mom & dad are grateful that he is happy and we are so happy that he understands things in relative terms. (We are using “things” in a general way in place of physical activities while on "this journey.")
What we mean here is that while he cannot run and jump like he is use to doing, he tries to do the those things and at times will say, “you know I can’t run and jump but I will try.” He says these things in a positive way at times; sometimes he wants to talk and pray about these things. While we are happy about his approach, we are also sad that he has to face these things. There is so much more to life than physical things and the fact that he still does these things—the best way he can—generates smiles from us and we are so happy to witness smiles from Nicholas. And we thank God for Nicholas smiles and approach.
And we know that "this journey" is and can be whatever and however God charts the path for it to be.
Note: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than where it is now at 0.8. And we know because we continue to see and experience that through God everything is not only possible, everything can be…
February 23, 2006 Blood Counts:
WBC: 0.8
HGB: 8.6
PLTs: 74
ANC: 130
___________________________
Wednesday, February 22, 2006 11:59 PM CST
ANOTHER GOOD DAY
Nicholas had an uneventful medical day (no pain and no issues, just the way we like it). He has not had much of an appetite over the last month or so, however, today he ate much better. Nicholas really enjoyed mom’s dinner: Caesar salad, steak chasseur, sautéed potatoes, broccoli, French bread, and sparkling apple cider (he calls it “appling cider”).
And tonight he was so happy to have his nanny, Kimmy, come over for a visit.
LABS TOMORROW (Thursday)
Because Nicholas has been doing well, tomorrow morning mom will do a blood draw at home and we will drop them off at a local lab for analysis versus going to LPCH. Results will take longer to be known, maybe by 3:00 pm.
SNAPSHOT OF NEXT WEEK
Monday we will be at LPCH for labs and examination, followed by Wednesday at LPCH for two procedures received monthly and a bone marrow aspirate with LP for intrathecal chemotherapy.
We are very, very grateful for the many blessings upon Nicholas; and we are so happy that blessings enable Nicholas to have smiles, laughter, and prayer through occasional sadness as daily there are some pretty hard times to deal with—times facing or going through activities that many would take for granted.
February 22, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, February 21, 2006 11:59 PM CST
GOOD DAY
Nicholas had a good day; this afternoon he was outside enjoying the freshness and fun of just being a kid at play. After riding his battery-powered Jeep in the front yard, he talked with friends out front and sat on our wooden bench under an Olive tree talking (like a Norman Rockwell moment), playing, and having fun.
From riding his Jeep in the driveway with Sage on her inline skates, to sitting with Gabrielle, Danielle, Andrew, and Blake he was happily enjoying this beautiful part of childhood—kid talk, play, and fun.
Please CLICK ON View Photos: Nicholas relaxing with his Nickelodeon magazine and Nicholas with a Carmel apple made by mom.
February 21, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, February 20, 2006 10:33 PM CST
NICE DAY, BMA SCHEDULED FOR NEXT WEEK
Nicholas’ lab work and check up at LPCH went by quickly today—this was a nice change versus having to stay the better part of the day for other procedures.
The blood counts are still low and out of range although the white blood count (WBC) has risen along with the platelets (PLTs). However, Nicholas is still Neutropenic referring to his absolute neutrophil count (ANC). (Patients that are neutropenic means they are immunosuppressed & at risk for infection and unable to adequately call on their own “immune defense system” because chemotherapy impacts the blood counts causing them to go down. Nicholas’ immune system has been compromised because of the recent chemotherapy; however, we are very, very grateful that he has not contracted a fever or infections.)
Next Wednesday, March 1, another bone marrow aspirate (BMA) has been scheduled to check Nicholas’ bone marrow, assess for leukemia. We pray that not only a decrease in the percentage of leukemia is present since the January 18 BMA, we pray that through God it is found to be free of any leukemia—a miracle through God. We know that Nicholas has been blessed and we pray for continued blessings and all of the glory to God. We, again, thank you for staying with us on this heart-wrenching journey. It continues to be an awful journey medically and physically and it continues to be a journey full of blessings every day. Because of love, Nicholas continues to find ways to face the medical and physical challenges!
Gratefully, his liver enzymes have improved and this is important medically because it means that another round of chemotherapy could include medicines that are a little more intense if necessary. Without liver enzymes in range there would be a great risk of using some of the more intense chemotherapy medicines as they could negatively effect the liver.
NICHOLAS
Nicholas’ playfulness and fun nature were present throughout the afternoon and evening. He was physically active and mentally displaying knowledge that he picks up from everything, literally everything and everyone, he comes into contact with. His alertness and ability to retain information to recall later is amazing. From physical play with dad and using his "noggin" with mom & dad he has mom & dad smiling.
IT IS NOT THE MATERIAL THAT GOVERNS NICHOLAS’ LIFE
We have said it before and live it every day—we walk with God along the way and “oh” it is a joyful, dominion day! So while medically the doctors have said what they have said, we truly see Nicholas shinning through the awfulness of leukemia. We believe, we trust, and we love God for His love.
February 20, 2006 Blood Counts:
WBC: 0.8
HGB: 8.7
PLTs: 78
ANC: 100
___________________________
Sunday, February 19, 2006 11:11 PM CST
ANOTHER NICE DAY
Although Nicholas vomited after waking up, he ended up having a nice day just relaxing at home, playing video games with mom, playing Zathura (a board game our friend Cyndi brought over today), and watching a little TV with brother Chris & dad. Nicholas fell asleep while brother Chris followed his request to be “patted”. It was wonderful to see him snuggle next to his brother and fall asleep. It’s always nice to see him interacting with one of his three older brothers.
As we continue to pray for a miracle from God, we do know that each day we are given is truly a miracle. We thank God for the miracle of today.
Note: Lately we have not mentioned Nicholas’ walking that has been hampered the last four months although after the first two months of the four it has steadily been getting better. His walking continues to get better and we are grateful that he does not express concern like he did during the first three months of the four. This too is a blessing—we do not see it as an improvement toward recovering what Nicholas had, we see it as improvement!
LPCH TOMORROW (Monday)
Tomorrow we will be in the clinic for lab work to find out if the blood counts are rising toward target ranges so we can schedule a bone marrow aspirate (BMA) for later in the week. The BMA is to determine what impact the recent treatment has had on the bone marrow since the January 18, 2006 BMA and its findings. However, we turn everything over to God and trust Him completely. And, we are so grateful that even with the January 18 news there has not been any leukemia in Nicholas’ peripheral blood—this is a blessing and we thank God.
(As we have said before in these journals, we trust and thank God every day not just when the days are the way we like them. It is not just a feeling of being lucky sometimes; it is knowing that with God we are blessed every time.)
February 19, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, February 18, 2006 11:59 PM CST
GREAT DAY, GREAT NEWS, GREAT EVENING
Simply stated, Nicholas had a great day from beginning to end. And in the middle, we received great medical news—February 16’s spinal fluid lab work has been completed and no leukemia was detected, and cultures for bacteria and viruses were negative. (Linking back to the February 16 journal the spinal tap was performed because of recent headaches…) No headaches and no stomach pain at all today!
Before the medical news and after, Nicholas was up and about “playing and having fun.” This evening Kaeli and her mom, Theresa, (our LPCH and Ronald McDonald House neighbors and now friends met during our stay March-July 2005) visited and there was laughter, friendship, and more “playing and having fun” throughout the house.
PLEASE CLICK ON View Photos for a peak at his smile today and playing “Whoonu,” a really fun-filled “what’s your favorite thing?” game. (Thanks Dave and Janie.)
What a difference a day makes. What a difference God makes in our days—or we should say, what a difference in our days because of God! We are grateful for every day and the blessings throughout the days. We are so thankful that there really are blessings, not just a blessing, throughout our days.
February 18, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, February 17, 2006 11:59 PM CST
Nicholas did not feel too well today; his stomach and head bothered him sporadically throughout the day. However, he also had smiles and laughter sporadically throughout the day although it was a quite day in terms of activities for Nicholas. Love is never over used and love is the constant that provides comfort even during quiet days.
Oh, and when he hears the sound of coins or sees money, that sure does make him for better for a moment Have you notice that in a lot of pictures taken of Nicholas, money is near by? Either coins or bills in his hands. He is really good at saving his money and has several places where he keeps it (piggy banks, metal money tray/box, his wallet, etc.) He is also really good about sharing, yes sharing, his money; for example, when we cross the bridge he likes to pay the toll and even when his brother asks for lunch money Nicholas likes to offer to give it to him.
Last night dad gave Nicholas a one dollar bill for something (we do not remember because there are a lot of times Nicholas does something for a penny, dime, quarter, dollar...) and the only dollar dad had around was one of Nicholas'. After giving that dollar to Nicholas, Nicholas said wait this was already my dollar, see this is the tear and mark one of my dollars has on it. Then dad remembered, Nicholas looks at all of his money. (Remember, he places his money in various places and sometimes it is based not only on the denomination, also the condition.)
Today (Friday) there were no other results from yesterday’s spinal tap so maybe tomorrow. We are so glad God is in our lives; we could not do anything within our lives without Him-well, do it feeling the level of love and comfort that is needed. And as always, all of you provide blessings to Nicholas, mom & dad, and our other three boys in the ways that you do (you know, thank you).
February 17, 2006 Blood Counts:
WBC: 0.4
HGB: 10.7
PLTs: 47
ANC: 30
___________________________
Thursday, February 16, 2006 11:59 PM CST
LPCH CLINIC: TWO UNEXPECTED PROCEDURES
Nicholas woke up with a headache again and at that time it was two full days of sporadic headaches. Low Hemoglobin can cause headaches so this morning’s lab work we expected to see just that. However, results of today’s labs did not reveal low Hemoglobin to the point where it should be causing headaches. The doctors went down a list of medical things that could be causing the headaches and for the first step they examined Nicholas neurologically and had him perform some things while laying down on the examining table—good news, everything appeared to be okay.
CT SCAN: The next step was to do a CT Scan of Nicholas’ head. So the first of two unexpected procedures was performed today—good news, the CT Scan was clear.
SPINAL TAP: The second of two unexpected procedures was to perform a Spinal Tap. Because Nicholas had taken his noon medicines and had a little to eat, they could not sedate him to perform the procedure in the operating room under anesthetics. So the Spinal Tap was performed after administering Ativan to relax Nicholas and applying some numbing cream as well as “cold spray.” After a series of questions from Nicholas, he likes to understand everything that happens before it happens, he amazingly laid his head down and the procedure was performed. Sitting up between, and facing, mom & dad, he laid his head on mommy and daddy’s shoulders while dad embraced and held him lovingly close to ensure he would not move during the procedure.
With the Spinal Tap a few things are important to determine: 1) If there is any leukemia in the fluid—good news so far is that the fluid looks clear; 2) If there is any pressure in the fluid—good news, there was none so this is a good indicator that nothing acute and dangerous is present, 3) If there is anything growing from the fluid that could be causing an infection—results should be known within 24-36 hours.
OTHER NEXT STEPS
Tomorrow we will have blood work analyzed at a local lab, so Nicholas will not have to get up early to go to LPCH. This coming Monday we will be back at LPCH for lab work and if his blood counts are showing recovery toward target ranges a bone marrow aspirate will be scheduled for later in the week.
WHAT WE ALWAYS EXPECT
Every day fears surface around all this leukemia stuff that are so very hard to explain, and hard to understand. And we know that every day as all of us go about our lives there could be very, very serious fears that have nothing to do with leukemia. And, we know, we pray, and we truly give thanks for God’s constant presence in our lives! We trust His love that has comforted us along this awful journey and trust His love to always guide, direct, and shield Nicholas. He has not let us down and He cannot because He is God. So when we think about all that is going on, we first think and praise God for his love that WILL lovingly see us through it all. We believe it because He has been doing it.
AND THIS EVENING…OUR SUNSHINE WAS LIFTING OUR HEARTS IN PRAISE
So a clinic visit for just labs and general examination turned into a 6-hour day at LPCH. After the Spinal Tap when one of the nurses was routinely following up with some questions of Nicholas, she asked Nicholas if he still felt dizzy and if he still had a headache. Nicholas said no to both questions and after she left Nicholas said to mom & dad with a grin on his face, “She just asked me those questions for no apparent reason!” He was definitely feeling better.
And tonight at home he was full of smiles and fun—what a difference fully concentrating on God’s love reveals. While it was a terrible day in some respects, we know that it was a blessed day in many more respects—Nicholas is smiling and having some fun.
February 16, 2006 Blood Counts:
WBC: 0.7
HGB: 9.8
PLTs: 44
ANC: 70
___________________________
Wednesday, February 15, 2006 10:39 PM CST
ANOTHER QUIET DAY
While today Nicholas rested almost as much as yesterday, his energy level was a little better and this afternoon his enthusiasm and fun nature was happily present. Then, he rested for another long stretch.
LPCH CLINIC TOMORROW (Thursday)
Tomorrow we will be at LPCH Clinic for lab work, focusing on blood counts to ensure levels are not too low requiring blood transfusions that can be part of the recent chemotherapy administered.
ENDURANCE
Endurance—sustaining patience of overcoming some stressful times—was one of the things we understood would be important to recognize from the onset of this journey. While endurance has taken on additional meaning with the challenges faced over the last couple of months, gratefully we have lifted our hearts, minds, and Nicholas to God and He continues to bless and guide us in a number of ways.
February 15, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, February 14, 2006 11:59 PM CST
QUIET DAY
Nicholas slept just about the entire day and it when we least expected it he got up this evening saying, “That’s it, I’m out of here!” He got up and left the family room. So from sleeping all day, when night fell and he awoke to a movie he said he has seen before that was selected for mom, we guess the relaxing environment was no longer. It really felt good to hear the energetic, fun nature in the way he said, That’s it, I’m out of here. And then seeing him get up and walk to his room with a grin on his face and sparkle in his eyes had us thanking God for his love for Nicholas.
Oh, after going to his room and then going to say hi to two of his brothers he came back to the family room.
Although we are scheduled for lab work on Thursday, because of his low energy level and headaches today we may arrange to go to a local laboratory tomorrow morning to have his blood counts determined to check his Hemoglobin (oxygen/energy indicator). This would be done to ensure a red blood cell transfusion is not needed based on the medical expectation that blood counts would have started to “bottom out” this past weekend before recovering.
LOVE EXPRESSED, EVERYWHERE
Nicholas sure found energy in thinking about having his favorite dinner: shrimp tempura, salmon/chicken teriyaki, and California rolls. And dad was off to the Blue Gingko, Nicholas’ favorite Japanese restaurant. And love really is expressed and felt everywhere as tonight while picking up the dinner dad had a warm, caring conversation with a “stranger in person,” however a “loving friend in spirit” through this CaringBridge site. Dad was recognized from pictures on the site and it was another blessing to be able to share thoughts and love for God through the conversation.
NOTE: Thank you, everyone, for your Valentine's Day messages, thoughts, and/or prayers! Like Christmas and "...I wish it could be Christmas all year long...," it could be Valentine's Day all year long so we can all do the loving things that we dream of doing as we dream them.
February 14, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, February 13, 2006 10:17 PM CST
GOOD LAB AND ULTRASOUND RESULTS
Nicholas’ lab results today were very good: 1) Still no leukemia in the peripheral blood, 2) The chemistry—monitoring of the pancreas, kidneys, liver, etc. reveals the enzymes are in targeted ranges, and 3) The results of last Thursday's lab work regarding some sores in his mouth are negative (good) & the sores have cleared up. Also, another ultrasound was performed and the Pancreas looks better (linking back to the February 6 journal and ultrasound).
The blood counts are still low and out of range as a result of the recent chemotherapy (today’s counts are above with targeted ranges, or below). However, amazingly, Nicholas is doing really well! We praise God for His protection and guidance; and as we think about the last 451 days we praise God for His consistent protection and guidance. As we have said before we do not know what tomorrow will bring; however, our trust and faith in God will be as strong as ever and "we know" God’s love will be as strong as ever.
NEXT day for lab work will be this coming Thursday.
NEXT bone marrow aspirate may be performed late next week if Nicholas blood counts recover close to targeted ranges.
MIRACLE, MIRACLES
We have not given up and continually pray that the leukemia the doctors reported in the bone marrow on January 18 not only continues to stay out of the peripheral blood, we naturally pray—and believe in miracles through God—that the next bone marrow aspirate reveals the bone marrow to be free and pure without any leukemia.
February 13, 2006 Blood Counts:
WBC: 0.4
HGB: 9.8
PLTs: 53
ANC: NA because some information is not available when the WBC is below 0.6
___________________________
Sunday, February 12, 2006 11:59 PM CST
BEAUTIFUL SUNDAY
Nicholas and mom spent the afternoon away from home (and we were not in the hospital or clinic, yeah!), at our family friends, the Nieuwsmas. Along with the Nieuwsma’s four girls, Nicholas baked cookies, played music, and other fun & relaxing things that make time with friends a blessing.
NOTE: If you have not seen the pictures from Friday's celebration at his former Montessori School or Saturday's visit by grandma and grandpa (Sheila's parents), please access the third album below under Links and scroll toward the end of the album.
LPCH CLINIC TOMORROW (Monday)
Tomorrow, Nicholas will be back at LPCH Clinic for lab work and an ultrasound (the ultrasound links back to the February 6, 2006 journal). While our minds are consumed with all of the “leukemia and bone marrow stuff,” our hearts are comforted through God’s love and we are so thankful His love provides all we really need.
So Clinic tomorrow and Thursday, and next week it is medically expected Nicholas blood counts will show signs of recovering from the January 30-February 4 chemotherapy. So late next week a bone marrow aspirate may be performed to check the marrow to see what impact the chemotherapy had on the leukemia to help determine next steps, or another 5-day round of the treatment received the week of January 30 will be administered.
February 12, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, February 11, 2006 11:59 PM CST
MORNING SURPRISE, AFTERNOON FUN
Nicholas woke up to a double surprise—grandma Charlotte and grandpa Floyd came to visit. For mom, having her mother and father sharing the beautiful day with Nicholas was a warm, loving gift.
The afternoon with grandma and grandpa was picture perfect: from a picnic on the picnic table of Nicholas’ play structure, to having grandma climbing up to the clubhouse atop of the structure to be with Nicholas, to just plain old fun with grandpa outside.
THANKFUL, TRUSTING, BELIEVING
While Nicholas continues to brightly shine from the sparkle in his eyes to the joy illuminating from his heart, 24-hours a day for over one year & two months now there are some very difficult moments, hours, and days. Knowing the difficulty that Nicholas has had with navigating some parts of this awful journey, it is simply amazing how he daily feels the love of God uplifting him above troubling times. It is simply amazing to see the sparkle in his eyes and joy from his heart!
As difficult as it is for Nicholas, and mom & dad, we are thankful for the trust and belief in God that does not let us down. The trust and belief are indestructible as we continue to see and feel Love manifesting in Nicholas. Can you see it? Can you feel it? Love, miracles…yes, where there is great love, there are always miracles—absolutely.
February 11, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, February 10, 2006 11:59 PM CST
TODAY, TONIGHT WE CELEBRATE LOVE
A quote was shared by Regina on the Guestbook today and it was so fitting, another expression of God’s love and its manifestation in Nicholas. The quote by Willa Cather, 20th century American novelist: “Where there is great love, there are always miracles.”
And if it was just one thing that Nicholas has and receives, it is love. Love continues to be the one thing that is ever-present in and around Nicholas. Do you see it in his eyes, his smile, and sense it from his heart, his caring about others? We hope you do see it, sense it, and can feel it. It is God at work in Nicholas; and we thank God for you being in our lives and the love you provide.
TODAY’S OBSTACLE-COURSE CELEBRATION
(SEE PICTURES by accessing the third album under Links)
Nicholas’ former classes at Diablo Valley Montessori School put on an absolutely wonderful belated birthday celebration today. The various classes created an obstacle-course celebration where there were several obstacles: 1) Students rode a bicycle around pylons, 2) pushed a stroller around pylons, 3) walked across a balancing beam, 4) crawled through a tunnel, 5) rode a wooden horse, and 6) pulled a tire. At the end of each obstacle was an instrument and each time a student reached the instrument that student would play the instrument and loudly sing (or say), “Happy Birthday Nicholas.”
Toward the end of the celebration, his teacher, Ms Shirley told Nicholas’ birthday story along with mom. Nicholas, carrying a globe, circled around a fixed item once for each of his six years. The item was a couple of feet in front of him so it was almost like turning around "in place." After circling the fixed item, mom shared information about Nicholas for that corresponding year. Then he received an instrument called a Melody Harp with lots of sheet music. Remember, this is the instrument also talked about in the January 26, 2006 journal and pictures from that day on the third album below under Links.
Nicholas received "tons" of love and had a great time! We hope everyone felt Nicholas’ love for them as well.
NICE DAY
Well, you can probably tell that Nicholas had a very nice day. And the evening was nice as well—love really does make everything better and mom & dad are so, so glad and know that we are blessed to be able to be loving Nicholas night and day, all along the way. While we do not know all that tomorrow will bring, we do know that it brings God’s love and His omnipotence, omnipresence, and omniscience. And in His love we will be guided, directed, and shielded.
February 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, February 9, 2006 11:59 PM CST
LPCH CLINIC APPOINTMENT AND BACK FOR PLATELETS TRANSFUSION
The clinic appointment went well. We noticed some sores developing on the roof of Nicholas’ mouth and a few on his cheeks, he has never developed mucositis so we weren’t sure what they were. They swabbed them today and have sent them off to the lab to check if there could be a sign of a virus starting or just mucositis from last week’s chemotherapy. He complained only once last night (Wednesday) of slight pain in the mouth during medicine time but then nothing after that.
Because everything is going well there was no reason to wait for results of today’s lab work (the staff would call us with the blood counts and other factors). However, we prefer to wait for the results based on last week’s chemotherapy and it worked out okay because we scheduled our tax appointment for late afternoon at our accountant's office in Los Altos (near LPCH so this was very fortunate). After leaving the clinic, while at our tax appointment, we got a call with the complete lab results. Nicholas’ platelets had dropped considerably (part of the chemotherapy process) and should get a platelets transfusion. So we wrapped up our tax appointment and went back to LPCH for the transfusion. Needless to say, it was a long day and we were back in Lafayette just in time to catch Nicholas’ favorite Japanese restaurant still open by about 10 minutes. Nicholas had his favorite: shrimp tempura and California rolls. We are glad he still has his appetite from the steroid pulse last week.
GOOD NEWS: There is still no leukemia in Nicholas’ peripheral blood and we praise God. The staff is still not sure what to make of it based on the January 18 bone marrow aspirate results, and we quickly praise God, a loving God. We praise Him for shielding Nicholas and Nicholas’ continued joy. Nicholas has been in good spirits all day and full of energy.
ANOTHER BIRTHDAY CELEBRATION?
Tomorrow afternoon (Friday) we will be at Nicholas’ former school because the school and classmates want to celebrate his birthday. They will be outside performing a little obstacle-course celebration for Nicholas and singing happy birthday to him since they could not do it sooner due to the weather and Nicholas' schedule around his actual birthday. Nicholas and mom & dad are looking forward to the additional joy around Nicholas. Ms. Shirley, his teacher, is an angel here on earth—she just loves Nicholas and we are so grateful. In fact, although Nicholas has not been at his Diablo Valley Montessori School in 447 days, they have been amazing with their support, teaching, and love from the administration, parents, and students.
February 9, 2006 Blood Counts:
WBC: 0.5
HGB: 10.4
PLTs: 17
ANC: NA because some information is not available when the WBC is below 0.6
___________________________
Wednesday, February 8, 2006 11:59 PM CST
BE GLAD, REJOICE, GIVE THANKS
What a beautiful day for Nicholas and we are reminded to “…be glad, rejoice, give thanks, for this is the day the Lord has made…” And we do give thanks for the day, the morning, the afternoon, the evening, and the night. Nicholas was outside this afternoon enjoying the sunshine and this evening he was playing and having lots of fun with some of our neighbors. Five of them spent a good portion of the evening at our home playing with Nicholas throughout the house.
What came to mind as they were playing, laughing, and moving throughout the house was that this is “A child’s life” full of all that you would want it to be. And we give the glory to God for lighting up Nicholas’ life!
PLEASE CLICK ON “View Photos” to see Nicholas and the neighbors that came over tonight.
LPCH CLINIC TOMORROW
Tomorrow afternoon Nicholas will be in the LPCH Clinic for lab work. And we pray for continued rejoicing, that Nicholas continues to be a light illuminating God’s great work.
February 8, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, February 7, 2006 11:59 PM CST
WHATEVER YOU ARE DOING, KEEP DOING IT
These were the words from one of Nicholas’ doctors yesterday to mom & dad referring to how well Nicholas is doing, “Whatever you are doing, keep doing it!” And what we are doing is trusting and believing in God’s love, His plan, His guidance, and His direction. And once again, we are thankful for all of YOU trusting, believing, and loving with mom & dad along the way...and the prayers around the world.
WE DO NOT KNOW WHAT THE FUTURE HOLDS, EXCEPTS GOD’S LOVE
We do not know what the future holds, however, we trust, believe, and love God—and through Him we are "living" a blessed life. And part of that blessed life is learning, loving, and living for God. And many times it has been so hard in many different ways, and yet throughout each day we are so thankful for God’s love and the manifestation of Love and Spirit throughout Nicholas—just look and listen to Nicholas and you see what we mean.
NICHOLAS
Today, Nicholas spent time on the back patio painting, in the front yard talking and playing with the neighborhood kids (controlling the environment because of the ANC), and on his computer creating Word documents while playing and practicing the spelling of words (and creating other documents for fun). What blessings!
February 7, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, February 6, 2006 10:50 PM CST
ANOTHER FULL DAY AT LPCH
Although today’s clinic appointment was just for lab work and check up, it was a full day based on results from some of the lab work. The Liver enzymes were dramatically high, out of range. An ultrasound of the stomach was performed and although the Liver appeared to be okay, the Pancreas was swollen revealing a touch of Pancreatitis. Thankfully, the Pancreas enzymes are in range.
A patient with full Pancreatitis would be hospitalized to rest the gut with IV nutrition and have IV fluids administered. However, that is not needed in this case. Another ultrasound will be performed next Monday. Some of the medication from last week’s 5-day treatment can cause Pancreas issues.
NEXT STEP
Thursday we will be back at LPCH for lab work.
WHAT WE KNOW MATTERS MOST
Trusting and believing…continues to help mom & dad get through the days and nights; and because Love and Spirit operates within Nicholas we trust and believe God's continued guiding and shielding of Nicholas! God before us, God behind us, God within us every day and every step of the way. Nicholas IS surrounded by God and it shows. God is the same yesterday, today, and will be tomorrow, and forever-we are thankful for His love.
February 6, 2006 Blood Counts:
WBC: 0.6
HGB: 11.4
PLTs: 60
ANC: 400
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Sunday, February 5, 2006 11:59 PM CST
NEW-NORMAL DAY (and it was very nice)
Nicholas’ ANC (essentially meaning his ability to fight infection) can not be calculated because his WBC is below 0.6, which means at this time he medically does not have ability to fight off infection. However, it does not mean Nicholas cannot enjoy himself, enjoy others, and have a nice day—as long as we control the environment. Nicholas had a very nice day and one of our family friends (Dave, Janie, and their four girls) were screened enabling Nicholas and mom & dad to spend an absolutely wonderful afternoon/evening with them.
Aside from playing with the girls, our two families went on a short walk. Nicholas thoroughly enjoyed feeding ducks and seagulls. He especially liked throwing bread up into the air and watching the seagulls catch it in mid-flight.
Note: We continually thank all of you for your direct and indirect support and love for Nicholas and our family. Once again, amazing friends (this time Judy and Greg) had a fun afternoon planned for today with Nicholas joining several school friends and others where the boys would be at one house, girls at another, and the parents at their home for a great time for all during the Super Bowl. Based on Nicholas’ ANC we were unable to join this party—and we are so thankful that God always, always provides for us.
CLINIC TOMORROW AND NEXT STEPS
We will be at clinic tomorrow to check blood counts and chemistries. It is expected that the 5-day pulse of chemotherapy medicines administered this past week will drop all of his counts considerably. We will be on close watch for fever or any other signs of infections due to the counts being low. Once the blood counts recover (2-3 weeks) Nicholas' bone marrow may be checked again to see what impact the chemotherapy had on the leukemia to determine what our next steps will be, or another 5-day round of the treatment received last week will be administered.
One day at a time surely has a new meaning for the Gilbert family. And one day at a time our love for God continues to grow; one day at a time we are amazed at everything about Nicholas in terms of his ability to chart his own path with God; and one day at a time we will continue to really work at being better in all aspects for God.
February 5, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA because some information is not available when the WBC is below 0.6
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Saturday, February 4, 2006 11:59 PM CST
RBC TRANSFUSION TOOK UP ALL OF TODAY’S DAYLIGHT
The RBC transfusion took up, virtually, all of today’s daylight. However, Nicholas was full of sunshine tonight and throughout the evening—vibrantly “playing and having fun” at home.
QUIET, NICE DAY (EVENING)
The entire day is summarized as a quiet, nice day. During preparation (pre-medication to guard against a reaction) and infusion of the RBC it was quiet in terms of activity and Nicholas slept most of the time. While this evening was rather quiet, Nicholas was energetic as he normally has been. Mom & dad are so thankful to see and hear Nicholas look so vibrant and lively. (For having a low HGB count reported yesterday, you would not have been able to tell yesterday or last night based on his energy level.)
Note:
Nicholas seems to now be a fashion consultant. This evening when his big brother, Chris, came home from work (Golden State Warriors), Nicholas critiqued his attire. Nicholas commented about Chris’ suit, shirt, tie, shoes, and even his watch, concluding, “That really looks nice; I like the colors and the watch looks good!”
And the Warriors won tonight—Nicholas shouted, “Yeh, go Warriors!”
February 4, 2006 Blood Counts:
WBC: 0.5
HGB: 7.4
PLTs: 120
ANC: NA (Because some information is not available when the WBC is below 0.6)
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Friday, February 3, 2006 11:59 PM CST
AND ANOTHER GOOD DAY
Nicholas had another good day; this afternoon he was in the backyard and played on the play structure on the side of the house. He spent most of the time in the upper clubhouse, a little on the swings, a little on the slide, and even tried climbing the wall-climbing unit (see it by clicking on View Photos). With the play structure on the side of the house and its upper clubhouse high enough to see over the fence, Nicholas had a good vantage point to engage with some of the kids coming home from school and other neighbors going/returning home.
And this evening friends, Cyndi and Sarah (Cyndi’s daughter), surprised Nicholas with a couple DVD movies and snack-size popcorn. Nicholas smiled and said, “You guys are so surprising!”
RED BLOOD CELL TRANSFUSION TOMORROW MORNING (Saturday)
Because of the good lab results yesterday, coupled with Nicholas “doing well,” we did not have to go to LPCH Clinic today for labs and check-up. The plan for today was now to draw and drop off labs at a local laboratory (so mom drew the labs and dad dropped them off early this morning). This afternoon LPCH received the results and called mom & dad to report them. Because the Hemoglobin (HGB) dropped to 7.7, very early tomorrow morning we will be in the LPCH Day Hospital for a Red Blood Cell transfusion. Labs will again be drawn.
With the chemotherapy we started this past Monday, it is medically expected that the blood counts will drop (part of the chemotherapy process).
APPRECIATING LOVE AND NATURE
You have seen (through Nicholas’ pictures) and read (through the journals as well as the guestbook entries—and we thank all of you so much for your entries to Nicholas and mom & dad) about God’s love for Nicholas and Nicholas love for so many things including people. And it is so pleasing to hear Nicholas talk about his appreciation for nature. Yesterday morning before leaving for the clinic appointment, Nicholas said, “I like the kind of breeze we are having today!” Another blessing from God, Nicholas recognition and appreciation for nature’s beauty.
February 3, 2006 Blood Counts:
WBC: 0.6
HGB: 7.7
PLTs: 110
ANC: 410
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Thursday, February 2, 2006 11:12 PM CST
NICHOLAS HAD A GREAT DAY
Walking, “walk-run” (remember the Olympic “20K walk” event with the participants “walk-running” with the heel of one foot on the ground while simultaneously the toes of the other foot are also on the ground), singing, socializing with nurses and doctors in the clinic, and lots of physical play. Mom & dad are so thankful for the consecutive days Nicholas has been without pain, and being lively and spirited. Specifically, so thankful Nicholas is able to be happy!
NICHOLAS IS DOING VERY WELL PHYSICALLY AND MEDICALLY
You know, several journals included the fact that God’s love everyday provides a gift to Nicholas and we have seen the manifestation of Love continuously, even when medically there have been and are awful challenges. We feel and see God’s love enabling Nicholas to get through the challenges when seemingly they were too hard to even confront. Actually, we see the everyday gifts of Nicholas’ life as miracles and we praise God for His love.
We do not know what tomorrow will bring and we are frightened everyday. However, we do know that God’s love will be within and around Nicholas everyday and His love will enable mom & dad to be the loving parents we need to be. And God’s love continues to provide a deeper level of calm everyday, knowing that He is God and therefore His love and direction for us will be just right—even when it is sometimes so hard to understand.
Discussing the good blood counts (although they are low, out of the target ranges) today with the doctors/nurse practitioners, it was hard for them to explain the favorable counts. And one said, “Miracle, Nicholas may be our miracle boy.” Again, we do not know what “tomorrow” will bring; however, through God it will bring miracles of love to us in many ways.
We trust and believe!
Remember, please click on "View Photos" for current/recent pictures and click on the third photo album below for all current pictures (scrolling to the end of that album).
February 2, 2006 Blood Counts:
WBC: 1.0
HGB: 8.9
PLTs: 143
ANC: 800
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Wednesday, February 1, 2006 11:59 PM CST
CANCER REPORTED IN THE BONE MARROW HAS NOT BEEN DETECTED IN THE PERIPHERAL BLOOD
In spite of the cancer reported in his bone marrow on January 18, the peripheral blood is still free of cancer. “Prognostic ally,” Nicholas’ LPCH oncologist is not sure what it means. And, mom & dad along with the oncologist do know that it means the obvious as stated above—no cancer in the peripheral blood and this is obviously great!
GOOD DAY, AND SOME ANXIETY FOR NICHOLAS
Because Nicholas’ night medicines are administered up to about 2:30 in the mornings, he has been sleeping until about noon when we wake him to administer medicine. (We wake him momentarily at 9:00 in the morning for one medicine part of the 5-day regimen.) When Nicholas awakes he continues to be in good spirits. However, this evening he did have some anxiety and just wanted everyone around him to “ please be quiet and not talk.” Administration of one medicine via a mask that takes about 8-10 minutes was right at the time he wanted quiet so mom & dad worked as a tag team (or like handing off of a baton) with the respiratory therapist present to comfort him and administer the medicine. Although he has received this treatment via a mask a few times before, tonight he was just “not up for it.” Nicholas expressed what he did not like about it today, and then cooperatively (with still a little anxiety) he composed himself and got through it.
DISCHARGED RIGHT BEFORE MIDNIGHT, SCHEDULED FOR A CLINIC APPOINTMENT TOMORROW AND FRIDAY MORNING
Nicholas was discharged just before midnight tonight (Wednesday) and we will return to LPCH tomorrow and Friday mornings for lab work and quick check up to assess Nicholas’ overall condition.
He was full of energy and in great spirits tonight. The drive home was lively, he just wanted to listen to some of his kid songs and sing, and that is what he did all the way home. Mom & dad were so happy to hear him making music that soothed our hearts!
Mom & dad will continue to administer chemotherapy medicines at home over the next three days to conclude the 5-day modest regimen that started Monday night right before midnight.
A FEW PHOTOS WITH LPCH STAFF ARE UNDER “VIEW PHOTOS”
February 1, 2006 Blood Counts:
WBC: 0.7
HGB: 8.2
PLTs: 99
ANC: 700
Tuesday, January 31, 2006 10:45 PM CST
SNAPSHOT OF THE DAY AND MOVING FORWARD
1) Nicholas had another good day: playing with mom & dad, LPCH staff, and on his own. His spirit is simply amazing. We love playing and just talking about anything with Nicholas. And dad had fun playing basketball with Nicholas in the room today and mom had lots of fun playing PS2 games with Nicholas.
2) Remember, the chemotherapy will be administered for 5 days in its targeted effort to destroy leukemia. In doing so, it would suppress Nicholas' blood counts so the blood counts are expected to trend down by next week. After this 5-day period Nicholas will be off of any chemotheray for a couple of weeks before the 5-day modest regimen is repeated (with possibly one change).
3) The LPCH doctors' goal is focused on making Nicholas comfortable, and recognize that medically it could put Nicholas back into remission. We love and trust God!
4) We love, love, love Nicholas! Our prayers are full of thanks for the continuous blessings in and around Nicholas. We do trust God and thank Him for loving us; and we do pray for some level of understanding. A lot of things along the way are so difficult to understand and we find ourselves thinking, "what does it all mean in terms of Nicholas continually having to fight this battle." And, we are thankful that through God Nicholas has been fighting this battle and remains full of love and caring!
5) Nicholas is scheduled to go home tomorrow evening (Wednesday) depending on lab work-specifically his liver function.
January 31, 2006 Blood Counts:
WBC: 0.9
HGB: 8.8
PLTs: 89
ANC: 700
___________________________
Monday, January 30, 2006 11:59 PM CST
ADMITTED INTO LPCH FOR CHEMOTHERAPY-AND AN AMAZING SURPRISE SURFACED
Although Nicholas had a really nice day (snapshot below), there is one thing that provided an amazing surprise (something great to mom & dad). First and always, our trust is in God and not the lab work because we do believe in miracles and the power that God has over everything. So we do not swing back in forth trusting in things like lab work when they seem to show good results, and then leaning on & trusting in God when things like lab results do not appear to be good. We trust God for His omnipotence and omnipresence, period. And we praise Him for the doctors and nurses that work so hard to do everything within their power for all of these beautiful kids navigating through life.
So the amazing surprise to mom & dad is the lab work highlighted by the blood counts below, revealing a healthy rise in the Hemoglobin (HGB), Platelets (PLTs), and Absolute Neutrophil Counts (ANC). What an amazing surprise to us, and we thank God for his constant presence. We just thank Him and glorify His name because He loves Nicholas, and all of us, period. We have to believe, because of His love miracles have happened and can happen again and again.
SNAPSHOT OF THE DAY
Nicholas has been in great spirits, engergetic, playful, and so lively. You can just see and feel the love pouring from him; and we stop and thank God for his beautiful and perfect work revealed through Nicholas.
Nicholas was showing the doctors that he could jump again, and this evening he put on a little dance show for us (while he was sitting up in bed so the dance was more upper body, arms, and head). Remember, KJ (another BMT patient) dances for the Golden State Warriors' Junior Dance Squad so perhaps through some inspiration from KJ, Nicholas is in the groove. Remember our recent outing to see the Harlem Globetrotters? That night before the game the theme song from the movie Space Jam was playing throughout the arena and Nicholas was dancing just like he did tonight. What a wonderful, happy sight for mom & dad and some of the nurses.
Nicholas was so happy to see the nurses and actually he was anticipating seeing them (calling their names out to mom & dad). Nicholas and his money: he set aside a few coins for his three night nurses and was so happy to call them in to his room to give a nickel, a dime, and a quarter respectively. He put a special mark on each coin so they would remember who it came from. Good thing they know that it is thought, not the amount, that matters, period. He had fun giving...what another beautiful moment to see the joy in giving as much as one loves to receive. (Again, you have probably seen or read about Nicholas and his money-he loves to save it and he loves to ask if we need it when we cross the bridge on the way to LPCH and at times when something "big" is needed).
January 30, 2006 Blood Counts:
WBC: 1.4
HGB: 9.2
PLTs: 102
ANC: 530
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Sunday, January 29, 2006 11:35 PM CST
…AND ANOTHER BEAUTIFUL DAY
Family and friends helped to make today so beautiful. An aunt & uncle, a couple cousins, and family friends were great to be around today for all of us. Nicholas, and mom, especially liked playing the board game—Operation with everyone. Please CLICK ON the third album under “Links” for more of today’s pictures (scrolling to the end for current pictures).
Nicholas has been walking so, so much better! He doesn’t look to mom & dad (or others) to help him get around and he has even asked us to chase him. Oh yes, it has been a beautiful day—we praise God and thank Him for so many continuous blessings. His love is felt all around us.
IN LPCH THE NEXT COUPLE OF DAYS
Tomorrow morning Nicholas will be in the LPCH Clinic for lab work and then will be admitted into LPCH for a couple of days (planning to be home Wednesday evening). Nicholas will receive a modest regimen of chemotherapy medicines that will be administered over five days. While we are thankful God has given doctors the ability to care for patients, we put our complete faith and trust in God to guide, shield, and heal Nicholas.
THANK YOU, ALL OF YOU, FOR YOUR BIRTHDAY WISHES AND PRAYERS
All of your birthday wishes have been like soft strikes onto a piano keyboard, a soothing melody of love and fun! Thank you so much for being with Nicholas in “all” of the ways that you have been. Please stay with us as we continue to see Nicholas, through God, shine like the sun making its way through clouds, showering us with his love.
Tonight, mom & dad each received a written gift of love from Nicholas. He wrote each of us a very, very short note: Mom XO and Dad XO. It was so beautiful to see him proudly walk up to each of us and hand us the notes with sweetness and joy.
NOTE: Nicholas decided that his laptop would not be named; he said he'll just call it his laptop. (And thank you Linda and Michael)
January 29, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, January 28, 2006 11:59 PM CST
GOOD DAY
Nicholas had a good day, waking up to play with KJ and Kaeli and in the evening playing with family friends, Derrick & Darin. And then he got to open his last birthday gift (yes, his birthday still continues a day later), a laptop computer he has been asking for over a year now. Along with money and all the things stated in his Song of Love (playing in the backgroung), Nicholas loves to type and play interactive games on our home computer. You may remember photos while in the hospital where Nicholas would set up his food tray like a desk. Now, he has his own laptop to type and play anywhere.
Please CLICK ON “View Photos” to see and then feel his happiness the laptop generated.
WE KNOW THAT GOD LOVES NICHOLAS
Following are excerpts from our journals toward the end of October 2005, right before Nicholas was going to receive chemotherapy called Clofarabine. We are thinking about those days for a variety of reasons that comes out in these excerpts:
You know or can imagine the love a parent has for their child, and then can imagine how immeasurable God’s love is for all of us. Would God leave the side of the children He cares so deeply for? No. "God is a very present help in trouble." He is ever present, right there, right now. We are not alone and this problem is NOT too big for God. The Bible says, "God is of purer eyes than to behold evil". If God sent his son to heal disease, sin, blindness, every ill, and to raise people from the dead, wouldn't that mean that Jesus was doing God's will? Was there ever a time when Jesus said he couldn't heal someone? That it was too late or too severe? No. Because Jesus knew that God did not send disease, sin or suffering. So Jesus healed by seeing mankind as God created them. As it states in Genesis: "And God created man in His own image, in the image God created He him, male and female created He them." So Nicholas isn't a material person needing physical healing. He is the image and likeness of God. And what is God? The Bible says, "God is Love. God is Spirit." So Nicholas is the image & likeness of Love; and is the image & likeness of Spirit. We don't look to the body for what is true about us, we look to God. So what is God saying about Nicholas? God is saying, "This is my beloved son in who I am well pleased."
It’s comforting to know that God, Divine Love flows throughout Nicholas’ body and it is pure! So while Nicholas will be in LPCH for a couple of days beginning Monday, we know God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be in, or placed into, Nicholas’ body that can have power over God—nothing.
January 28, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, January 27, 2006 11:59 PM CST
MY BIRTHDAY
Nicholas had a fun day with family & friends, and all because of God. We went to a matinee for a movie, and after arriving home the afternoon, evening, and night was full of surprises and love. There was a parade of visitors and two are "spending the night" (KJ and Kaeli).
MY HAPPINESS
Mom & dad are reminded that happiness, like the spiritual attributes we long for, come from God and there is absolutely nothing that can take Nicholas happiness from him. Nicholas' strength, energy, joy, and the passion (as well as compassion) he continually shows makes our lives...well truly makes our lives amazing.
PLEASE DO TWO THINGS TO GET A BETTER SENSE OF NICHOLAS TODAY
1) CLICK ON "View Photos" to get a sneak peak at his story of the day.
2) CLICK ON the third photo album under "Links" to see the whole story of the day (accessing and scrolling to the end of the album for current pictures).
The story line:
- Look at me
- I am happy as can be
- And I am loved
- Forever more
- Just look at me
- And I am sure that you will see
- I am happy as this "piggy" (well it rhymes and it is part of the picture)
- And I am loved
- I am loved
- It's my birthday; and I know I'm loved everyday
January 27, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, January 26, 2006 11:59 PM CST
NICHOLAS
Tomorrow (Friday), Nicholas will be 6 years old; and today, Nicholas gave himself a birthday gift that actually gave a gift to mom & dad, his teacher, and two of his former classmates. The gift he gave himself was the “Birthday Song” he played on an instrument in his former classroom (please CLICK ON View Photos). And the gifts to us continued as Nicholas’ love continues to radiate from his ways, truly, generating gifts to our hearts and minds as we know we have seen blessings from God along the way, and today!
LIFE AND LOVE
What we—and you—have seen along the way is Love begetting love. The miracle of grace is no miracle to Love. Truth and Love are at work, we believe because we have seen and are so very grateful for God’s words because His words are life to us and medicine to all our flesh. (Proverbs 4:20-22—“Pay attention, my child, to what I say. Listen carefully. Don’t lose sight of my words. Let them penetrate deep within your heart, for they bring life and radiant health….”)
Many of you may remember the following portion from the song, Rock of Ages:
“…Christ, the Truth, foundation sure,
On this rock we are secure;
Peace is there our life to fill,
Cure is there for every ill,
Rock of Ages, Truth divine,
Be thy strength forever mine."
We believe…, we believe…, we believe…!
January 26, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, January 25, 2006 11:59 PM CST
TODAY’S CONSULTATION…AND NICHOLAS IS IN THE ABSOLUTE BEST HANDS—GOD’S
Today’s consultation has us in tears, empty in thought and feelings regarding what is said medically. The calm we spoke about the last few days continues and although the emptiness does not subside, we are full of hope, as we trust God and His word toward Nicholas being healed in Jesus’ name. And, we feel, we just know that Nicholas is in the absolute best hands—Gods—and in His hands He will carry Nicholas through what medically cannot be done. Nicholas has been and is in the absolute best hands!
We have seen evidence of Love guiding, shielding, and healing Nicholas and that Love is ever-present. So, yes, we absolutely believe…because God loves Nicholas!
NICHOLAS
Nicholas looks great, doesn’t he? Nicholas is amazing, isn’t he? And Nicholas is loved, isn’t he? We sense all the love that you directly and indirectly continually provide Nicholas (and mom & dad as well as our other three boys), and imagine…amazing as the love is that we sense through you, we know that it is true that God’s love is absolutely pure and all-powerful. His love does more than amazing things and because of God and His love for Nicholas we do expect amazing things for Nicholas, through God. The hope gives way to our trust in God.
Tonight we read a book, The Legend Of Three Trees, a classic story of following your dreams. Following is the written caption about the book; it provides a good sense of the beautiful, warm story:
“Every child has big dreams for his or her future. But what happens when God doesn’t fulfill our dreams…at least not in the way we expect? In this new telling of the classic legend, your child will meet three young trees that have big dreams for their future. The olive tree wants to be a treasure chest, the oak tree hopes to be a mighty ship, and the pine tree only wants to stay on the mountain and point others to God. But all three trees are in for a surprise—because God has a much different, much better plan in store for them. Join our three trees and see how sometimes the dreams we have for ourselves are much smaller than the dreams God has for us.”
And the ending of the story provides comfort for mom & dad tonight. The ending reads:
“For if we follow God’s path, we will travel far beyond even our greatest dreams.”
And, we believe, we trust, we pray for Nicholas’ complete healing. Please pray and “know” that Nicholas has been blessed and we believe in miracles, that bears witness of God’s omnipotence, omniscience, and omnipresence!
SCHOOL TOMORROW (Sort of)
Tomorrow (Thursday), Nicholas’ teacher, Ms. Shirley, has arranged for Nicholas to be in his former class for a couple hours tomorrow evening and two of his classmates will be there with him. It will be a time for Nicholas to “be in school,” a place he loves very much—and two of his friends (classmates) will certainly help make the time back in school lots of fun.
January 25, 2006 Blood Counts:
WBC: 1.1
HGB: 9.0
PLTs: 74
ANC: 300
___________________________
Tuesday, January 24, 2006 11:59 PM CST
LPCH CLINIC TOMORROW (Wednesday)
Tomorrow morning we will be in the LPCH Clinic for lab work and to conclude consultation on what to do medically. We will make a decision knowing that God, that God is leading the way. Again, the calm feeling that came over us yesterday during the consultation has seemingly wrapped itself around us as the greatest sense of peace—even during a time of suspected trepidation—and is permitting mom & dad to breathe easier along with providing comfort to speak with a sense of God’s loving hand showing us the way. And we know that Nicholas is loved and in His hands, so nothing can cause harm to Nicholas as he is shielded from anything contrary to love. We continually pray and believe…
…”Green pastures are before us, which yet we have not seen,
Bright skies will soon be over us, where darkest clouds have been,
Our hope we cannot measure, our path in life is free,
Our Father has our treasure, and He will walk with thee.”
NICHOLAS’ DAY
Nicholas’ morning started with wrestling mom in bed (yes, wrestling mom). What dad heard was, “It’s pummeling time…” What dad saw was Nicholas bouncing on the bed (on his butt not standing) and distracting mom with his hands as he catapulted onto mom toward earning a 1, 2, 3 count. The sounds of a child having fun embeds love into your heart and brings back memories not only of that child’s play from other times, it also brings back memories of ourselves and our childhood fun.
This afternoon mom was not feeling well (perhaps from being pummeled so many times from this mornings wrestling match). Nicholas, combining his caring nature with his sense of medical care (that he is all too familiar with), went to get some Tylenol, got a bottle of water, a blanket, and said, “You sit there mom, I’ll take care of everything.” He did just that, including putting everything away (“putting everything away”…dad was beaming).
And what we feel…
…”We walk with Love along the way, and ‘O’ it is a holy day,
No more we suffer cruel fear, we feel God’s presence with us here,
The joy that none can take away is ours, we walk with Love today.”
January 24, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, January 23, 2006 11:59 PM CST
ANOTHER BEAUTIFUL DAY
Today started very early as we prepared and made our way to LPCH for lab work and consultation in preparation toward making decisions on the direction we will take for Nicholas. Before we talk about the medical aspects of the day, we are first thinking about the beautiful day we shared holding & talking with Nicholas; enjoying family-friend, Linda, whom mom grew up with and her husband, Todd, who joined us for a late lunch because we did not leave the clinic until late this afternoon. And this evening at home was spent with Kaeli (remember Kaeli from the Ronald McDonald House), her brother Seamus, and mother Theresa.
The beautiful day was filled, or we should say spent, focusing on the fun. Hearing the joy from Nicholas playing and laughing—laughing out loud—was music to our hearts.
CALM
The consultation provided more information to mom & dad, more information to read & digest. And amazingly, there was a beautiful sense of calm as we talked about directions to take. Medically, the first thing is to have Nicholas in remission and two clinical trials were discussed—with one endorsed by a leading expert and this one felt good for many reasons that are truly hard to explain because the feeling just “came to us.”
So tonight we are reading the voluminous amount of information on the two trials, and praying, giving thanks to God for the calm that has come over us. Thanks for guiding our thoughts and illuminating the direction, His direction toward revealing Nicholas to reflect the “truth” about health and healing through Him.
And we are so thankful that today’s lab revealed purity in Nicholas’ peripheral blood, praying and thanking God that the disease the doctors stated last Wednesday has not entered into the peripheral blood. We continually believe, and we continually trust God’s word and His direction for health and healing through Him. We believe that what the doctors reported last Wednesday can be reversed because it has no place in God’s perfect work (without error).
NOW WHAT
Tomorrow our doctors are expected to have another portion of information, from the University of Minnesota regarding a BMT process wherein a patient is not in “complete remission.” Wednesday morning we will be back at LPCH clinic for lab work and a decision by mom & dad on the direction to follow will be delivered then or tomorrow (Tuesday).
During what we, actually, expected to be terrifying as we pray, act, watch, listen, and pray for God’s direction, again we are so thankful for the calm He has placed over us. Only God can provide calm during a time like this.
January 23, 2006 Blood Counts:
WBC: 1.2
HGB: 8.9
PLTs: 100
ANC: 380
___________________________
Sunday, January 22, 2006 10:02 PM CST
BEAUTIFUL DAY (Party with family and friends representing all of you)
Once again, we understand what we have been told medically; and once again, Love flowing through Nicholas is what we believe is omnipotent, omniscience, and omnipresence. We believed yesterday, believe today, and will continually believe that Love’s manifestation will present Nicholas free from anything contrary to purity and perfection—God’s work.
Family and friends showered Nicholas with so much love today as we celebrated his January 27th, 6th birthday. And mom & dad felt so good seeing Nicholas enjoying all the wonderful, exciting, and fun times you expect from a birthday. He was free from anything except enjoying family and friends, laughing, playing and having fun.
PLEASE CLICK ON THE THIRD ALBUM BELOW under Links and scroll to the end of the album to view the smiles, laughter, and fun from today’s party.
LPCH CONSULTATION TOMORROW MORNING (Monday)
Tomorrow’s consultation is scheduled to provide final information on directions worldwide to consider. There are no words to describe what we are feeling, and we lean, we lean completely on God because we know that we cannot do any of the things in front of us by ourselves. Tomorrow will unfold as tomorrow unfolds—God, our Father guiding our path.
Right now, we are looking at Nicholas and thanking God for the beautiful son, beautiful friend he is to all of us. We thank God for guiding and shielding Nicholas throughout this journey and know that he is loved. Thinking & praying and crying & talking with our Father, God feels so good. Right now listening to the song, He’s My Son (“hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html”), transcends all that we are, closer and closer to God:
He’s My Son
Down on my knees again tonight,
Hopin' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You
Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone
Can You hear me?
Can You see him?
Please don't leave him,
He's my son
January 22, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, January 21, 2006 11:59 PM CST
NICE DAY WITH FAMILY AND FRIENDS—MORE TOMORROW
Nicholas, and mom & dad, had a very nice day with visits by relatives and friends. It was so nice to feel the love in the air and hear the joy coming from Nicholas’ heart. You know, the playfulness that is pure, innocent, and lots of fun. It seemed especially nice for others to witness what we see in Nicholas, “love directing life.”
TOMORROW (Sunday), an early birthday party at a local restaurant will continue the showering of love to Nicholas from friends and family. And the showering of love is a show of believing—we continue to celebrate life and love and happily sense a beautiful circle of love generating life!
NURSES BRINGING LOVE, SHARING LOVE, AND LIVING LOVE ON AND OFF THE JOB
When you love what you do, it seems to have the power to give and provide all that the heart needs. We are so grateful that Nicholas’ nurses have given Nicholas love that in it self has been medicine to Nicholas. In fact, their love has been medicine to mom & dad as the nurses continue to provide our family with love through unique friendships blending that friendship with what seems to be a family bond based on the very, very close relationships. And from it all we have been blessed to feel a soothing sensation in our hearts, in and out of the hospital. They have helped to provide a sense of calm through it all, even when we are out of the hospital as the friendships continue.
Truly, they have made our lives in the hospital, lives to positively remember although the purpose of being in the hospital understandably would not have you wanting to be there for more.
January 21, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, January 20, 2006 11:59 PM CST
REMEMBER, "LOVE IS ALL YOU NEED"
Looking at Nicholas in the picture above, the first picture after clicking on View Photos, and the pictures (at the end) of the third album under links that were taken yesterday, "believe, believe, believe" that "Love is all you need." Love and spirit flowing through "your being" that conquers everything in conflict with the pureness and perfection of even what we cannot see. However, more gently, beautifully revealing love externally as a reflection of that Love. With Love expressing Itself, you would see love and we believe, we believe, we believe because we see Love illuminating from Nicholas.
Do you see it in the pictures in the places described above? Although it is not just the pictures, it is the rays of warmth released from Nicholas, it is the softness in the words you hear from Nicholas, it is the embodiment of Love you would expect and I'm sure you have felt in your life. And we are so grateful for God's love because He continues to demonstrate that in the face of what has seemed insurmountable over the last 15 months. Because there have been so many blessings revealed through Nicholas throughout and we believe, because of God and His love, we will continue to witness these blessings because it is His word. We believe!
And the love that surrounds Nicholas through all of you from near and far, we are so thankful. Look at the love from his friends (from school and home) and one of his cousins in today's pictures! You see this is another way we know we are blessed. Nicholas, mom & dad, our family is blessed with a showering of love from all of you near and far. We feel the love from you as it seemingly reaches us instantly from your thoughts and prayers.
Note: And AAA, we are so grateful for their unwavering support of mom & dad, for Nicholas.
THE PICTURES
Although it is not just about the pictures, they do tell a story here. In addition to the picture above, please CLICK on View Photos and the Third Album Below Under Links to see, feel, and enjoy Love. (...scrolling to the pictures at the end of the album because all the pictures in the album leading up to the BMT and through today are in chronological order.)
In today's pictures you will see:
- Some of Nicholas' friends and one of his cousins. (The friends and cousin I guess are your delegates today because all of you are truly a blessing to us)
- Tim Roye (radio play-by-play announcer) along with a little help from Nicholas interviewing Derek Fisher who was the player of the game. Oh, Nicholas' question to Derek Fisher was, "Who is the hardest team to play?"
With all of the joy and excitement seeing Nicholas sitting up there, brightly shining and smiling we did not hear Derek's answer that was broadcast throughout the arena and on the radio. Friends and some of Chris' (Nicholas' big brother) colleagues at the Warriors who were listening to the radio either from their homes or driving home from the game heard it and telephoned us in wonderment of hearing Nicholas' soft and loving voice. Were you listening to the radio and did you hear Derek's answer?
? The Golden State Warriors' main scoreboard and information system above the court and their acknowledgment of Nicholas' January 27th birthday, arranged by Gina (thank you)
? Some of the players and staff with Nicholas before the game (although so many of the Golden State Warriors' staff in front and behind the scenes were more than what you would wildly expect in their, true, showing of love.) We have said it before and we have also said that we feel we should say what we see & feel—THE WARRIORS ORGANIZATION is so much more than a caring organization on and off the court, even when no one is looking!
And, what a surprise when Bob Fitzgerald (television play-by-play announcer) walked over to Nicholas and mom & dad before the game while we were sitting courtside. Bob said hello to Nicholas, by name. And then I remembered, one of Nicholas' nurses is Bob's sister and through the connections (and love) Bob recognized Nicholas.
? The kids having a "Great Time Out"
? Thunder (the Warriors mascot) touching Nicholas' heart as well as touching the other kids' "excitement button"
FAMILY ON SATURDAY AND FRIENDS ON SUNDAY
Just being around family and friends is our plan for the weekend, with our quiet time with Nicholas at night and early mornings. Nicholas loves the time when we lay down to sleep and loves the morning time together to just "cuddle" and gently get out of bed. Mom loves the gentle and slow process of getting out of bed while dad loves to get up, get started, and doing things for the family that are behind the scenes. Actually, mom deserves the gentle and slow process because she gives so much love that she deserves what she feels (although dad pushes her to get up earlier to enjoy the beauty of the morning).
FROM NICHOLAS
"I just want to say, I love all of you!"
January 20, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, January 19, 2006 11:29 PM CST
NICHOLAS HAD A GOOD DAY
We talk a lot about trust and we absolutely walk with trust. Also, we talk a lot about knowing the truth, knowing that love manifests love and there is no doubt that Nicholas is loved. Loved by mom & dad, loved by his brothers, his relatives, and friends including you our amazing friends through CaringBridge, all of you that are gratefully part of our lives. So we are grateful and joyful because love absolutely manifests love and that is why we are not surprised to see Nicholas having a good day.
Looking and reading above about Nicholas, it reads: “Nicholas—truly—illuminates with rays of sunshine that warms your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others are amazing.” Through it all Nicholas has demonstrated time and again God’s loving touch upon him, and now we are looking for that love to manifest itself outwardly in every aspect. We believe…we believe…we believe.
HOW THE DAY WAS SPENT
Well, as his Song of Love goes, Nicholas was caring about others today via his concern and actions with dad a couple times, drawing, playing, and having fun. He had a surprise visit by his friend KJ (remember KJ from the Ronald McDonald House…). And Nicholas was doing homework via his Leapster multimedia learning system tonight. Thinking back over the past several months, remember, money has been a big interest for Nicholas. And that is what he was learning on Leapster, adding and subtracting money (pennies, nickels, dimes, and quarters). Nicholas said, “They make it fun while you are learning.”
EARLY BIRTHDAY PRESENT
Nicholas’ sixth birthday is January 27, however, our friend, Gina, is giving him an early gift—her suite for tomorrow night’s (Friday) Golden State Warriors’ basketball game against the Cleveland Cavaliers. So Gina, her daughter and several other friends and one of Nicholas’ cousins will be together for a “Great Time Out” (as one of the Warriors’ tag line reads).
As we stated before in several journals throughout the last 15 months, the Golden State Warriors have truly demonstrated being a caring organization, even when no one is looking or knowing how they help to make a difference in people’s lives. Remember, they have sent their mascot—Thunder—to our home, to interact with Nicholas at a game in a suite provided by the Warriors, and interacted with Nicholas and other kids at Children’s Hospital Oakland on a few different occasions.
This morning we talked with the Warriors and they have arranged for Nicholas to Meet & Greet some of the players tomorrow before the game. And Gina has arranged some special surprises, including a visit by Thunder tomorrow night.
LOVE (updated)
We are blessed by all of you and the various ways you interact directly and indirectly with us; thank you! And thanks for believing…because the TRUTH IS Love is all we really need. Love will beget love revealing Nicholas pure and perfect, revealing the breath of life...
January 19, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, January 18, 2006 7:36 PM CST
TERRIBLE NEWS
TODAY’S BONE MARROW ASPIRATE SHOWS THAT THE CANCER IS BACK
At times it is seems so difficult to do what is right and that is okay, because we are okay with doing what we believe is right even when the road is “slippery and seems difficult to climb.” We try to be strong and lean on God for strength, wisdom, and comfort. We trust Him and we are faithful. And, we make mistakes. We are talking about making mistakes and doing what is right because we simply do not know what is right to do at times, and right now! We keep our focus on God because He does not make mistakes! So we really do know what to do, trust and believe in God.
We are faithful and believe wholeheartedly in God’s word. Our focus includes knowing the truth—Nicholas is made in God’s image and likeness and therefore is pure so nothing can weaken him—and we will continually pray and believe for this truth to manifest itself because we believe… We do hear what is determined medically; however, we focus on God’s love to manifest itself making Nicholas whole and free from anything contrary to purity because of His omnipotence, omniscience, and omnipresence. We pray so diligently to understand and then simply pray to our Father, God asking for His Love to take over everything within and around Nicholas. And we know that we do not have to ask because it would be asking God to be God. He is, and we are so grateful.
We pray for God’s understanding as we try to do what is right, asking for His guidance because as complete and deep as we love Nicholas, He loves Nicholas so much more. We want God to make Nicholas feel all right—and although it seems willful we trust He understands our pain, Nicholas is our son, AND Nicholas gives so much to everyone.
THE TERRIBLE NEWS
At LPCH this afternoon, we were told that this morning’s bone marrow aspirate shows that the cancer is back. We just arrived home with Nicholas! All we can really do at this moment is love Nicholas and PRAY to God, to make Nicholas all right. We know He hears all of our prayers and this, too, makes all of this seem so difficult. (Father, we love and trust you and thank you for being with him as you continually have been. Nicholas needs you so much right now—please Father, touch him and make him all right.)
The doctors are surprised because Nicholas looks so good and his peripheral blood counts/levels are pretty good. We are not surprised because love manifests in Nicholas and love reveals love. So, we PRAY that what is in the marrow is stopped, knowing that miracles (God being God) happen through God!
Nicholas’ doctors are reaching out again to other hospitals and next Monday we will talk with his doctors to make decisions. As Nicholas’ doctors are aware, mom & dad have also been reaching out to other hospitals and talking with doctors about Nicholas to get other perspectives. Nicholas’ doctors understand that the focus is on Nicholas and they have been amazingly supportive of our efforts. Thankfully, we trust the medical leadership of Nicholas' doctors.
More importantly, we maintain our trust in God and thank Him for providing wisdom to the doctors to carry their part of curing Nicholas. We are more than hopeful, we trust even in the face of what we are hearing because nothing has power over Nicholas except for God. Miracles have happened already with Nicholas and we believe…we believe…we believe.
January 18, 2006 Blood Counts:
WBC: 2.6
HGB: 10.2
PLTs: 162
ANC: 1,320
___________________________
Tuesday, January 17, 2006 10:35 PM CST
BONE MARROW ASPIRATE AT LPCH TOMORROW (WEDNESDAY)
Tomorrow we will be at LPCH very early in the morning for lab work and then the operating room for a bone marrow aspirate (BMA) and lumber puncture (LP). The BMA and LP medical procedures will assess Nicholas’ bone marrow and central nervous system for remission status. While Nicholas will be recovering, part of the morning we will be in conference with doctors to really understand the various “medical” options. Mom & dad are frightened, however, we trust God and feel His presence comforting us. It’s not easy to experience all that Nicholas has been going through and it is so hard trying to understand what Nicholas may feel day after day, week after week, month after month, and now over a year. Although we have moments of being frightened, we really trust, and pray that the doctors hear God’s voice and guidance.
OUR TRUST IS IN GOD
WE PRAY that tomorrow’s procedures reveal what is true, God’s loving touch presenting Nicholas free from cancer because it has “no” place in His creation.
Remember Hana’s writing, titled I Wonder Why, from our November 11, 2005 journal? We have absolute faith and trust in God and we, too, have wondered why about all of the kids with any seemingly life-threatening disease. And we pray, act, and live in the way that glorifies Him in these times of pain knowing that through Him Nicholas will be made whole and free from cancer—it’s hard to see this because of all of the things that Nicholas has experienced, and then it’s hard not to see God’s love because of all the good things and protection (shielding) Nicholas has experienced. And everything else gives way to trusting God because He provides our strength and our fortress, because He will help Nicholas, because He is omnipotent, omniscience, and omnipresent!
READING, SHARING, LEARNING, AND FUN WITH MS. SHIRLEY
This evening, Nicholas’ teacher, Ms. Shirley, visited. They were studying Chinese New Year, Martin Luther King, Jr., talking about Nicholas’ Hawaii trip last month, writing, laughing, and on-and-on-and-on. Nicholas was very energetic and so enthusiastic about learning (just like the days when he was going to school). And these beautiful moments are moments of truth, of God’s love operating within Nicholas revealing what has to be true—Nicholas is made whole, pure, and perfect through God.
EVERY THING WILL BE JUST RIGHT
For one of mom & dad’s wedding anniversary, dad gave mom a magnetic poem that was a reflection of our very first walk together. It was raining that night, however, everything was “just right.” The poem reads: “Some people walk in the rain…others just get wet…” Like those simple moments, there is nothing to fear when everything is “just right” so there is nothing for us to fear knowing and trusting that through God every thing will be “just right.”
January 17, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Monday, January 16, 2006 11:59 PM CST
Playing, homework, cooking, shopping, and relaxing was how Nicholas enjoyed the day.
1) Nicholas was played outside in the fresh air under the blue sky with neighborhood kids (along with dad). We went for a very, very short walk on the trail at the end of our court (well dad went for the walk because Nicholas was riding high, on dad's shoulders by the time our short walk started).
2) Nicholas' school teacher dropped off a book about Martin Luther King, Jr. so this afternoon Nicholas spent time listening to the story and began writing his story about Martin Luther King, Jr.
3) Helping mom cook is another favorite thing to do for Nicholas. Tonight he helped make cornbread to go with our dinner.
4) Shopping, at Toys R Us again, was part of our evening. Nicholas wanted to go back to Toys R Us to find a PS2 game he has been looking for. Mom used to love to shop and it seems like Nicholas has picked up the check so to speak. He even likes to shop online.
5) And relaxing together is how he spent the rest of the evening.
January 16, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, January 15, 2006 11:59 PM CST
Another quiet, however, good day at home. More and more, Nicholas is walking better and getting up on his own to do the things that he wants to do. And tonight, he even jumped a little.
Remember, this coming Wednesday Nicholas will be at LPCH for a bone marrow aspirate and lumbar puncture to report on the status of the marrow and spinal fluid.
You know, for a moment we wonder would it means if the report shows the leukemia is back. Does it mean that God has abandoned Nicholas? Does it mean are prayers are not being answered...? AND then that moment is "put behind us" because we know that God is the same yesterday, today, and tomorrow. We know that He hears our prayers and like a mother and/or father to their child, all of us would naturally and unconditionally care and provide for our child. THEN we focus on God's omnipotence, omniscience, and omnipresence and just know that He will comfort and deliver Nicholas perfect soundness of mind, wholeness in his nature, in his immortal spirit, and even to the joints & marrow of his bones. In fact, we feel and see God's presence in so many ways every day. He has not left Nicholas' side for He is leading... We are thankful and will forever praise and give all glory to God for His work is perfect and His work with Nicholas is proving to be right for so many reasons. We pray for our son to be free from all of this "leukemia and bone marrow stuff" because His work is perfect, without flaws so the manifestation of His perfect work will reveal the puritiy within Nicholas because His word says so.
January 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, January 14, 2006 11:59 PM CST
Nicholas had a quiet, good day at home. This evening we were blessed with dinner and the company and conversations of more friends. The Edwards’ family made dinner for Nicholas (and we benefited with dinner as well) and spent the evening with all of us—helping us relax and smile a little easier.
Staying the course is what mom & dad need and wholeheartedly will do—Nicholas is our son. Staying the course with us—we know we are blessed with all of you.
We know, we just know, that we do not need to ask you for your prayers and love because we see and feel your constant presence. All of us know the demands and pleasures of life and along this journey it seems to be full of demands, although thankfully sometimes we see and feel the pleasures that life through God provides. So we can imagine the demands on your life and that is why we are forever thankful that you choose to be with us on our journey (and thankful for you choosing for it to be your journey too)! Please, stay with Nicholas and our family because every day until he feels all right, and complete healing is manifested it feels so good to know you are there. Although, we know that only God can bring Nicholas happiness, only God can bring him peace—and we feel that He has brought you into our lives to help see us through it all.
Fear thou not; for I am with thee; be not dismayed; for I am thy God; I will strengthen thee; Yea, I will help thee (Isaiah 41:10).
January 14, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Friday, January 13, 2006 11:59 PM CST
ANOTHER GOOD DAY
Nicholas believes, we believe, and you believe. Nicholas is doing all the right things, we are constantly working on doing all the right things, and again-and-again-and again we are so grateful for all of you and the various ways you directly and indirectly help us along the way.
And evidence of Love manifesting is another beautiful day for Nicholas. And Gina, mother of Kas who was in a class at Diablo Valley Montessori School with Nicholas, once again arranged something special for our family. This evening she arranged for Nicholas to go to the Arena in Oakland to watch the Harlem Globetrotters from a suite (to control the environment) with her family and friends. Nicholas had an incredible time. The electricity in the air, the beat of the music in our hearts, and excitement resonating throughout Nicholas came through with his singing, dancing, and playing throughout the evening. PLEASE CLICK ON View Photos for a few pictures (other pictures are at the end of the third album under Links).
Did you know that now cotton candy also comes in a tub? It does; how neat (I mean really neat in terms of not being so messy) is that!
Mom took some videos of Nicholas enjoying the evening and in one of the videos, Nicholas let his Harlem Globetrotters ball slide out of his hands so he could fully get into the rhythm with his hands, arms, shoulders, neck, and head. He was enjoying the moment and enjoyed the entire evening so much! What a beautiful surprise.
January 13, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, January 12, 2006 11:59 PM CST
GOOD DAY, AND THINGS ARE LOOKING GOOD
Nicholas had a beautiful day. We all had a chance to get a little rest this morning and this afternoon and evening Nicholas was, well like some of the words from his Song of Love playing in the background as you are reading the journal, “playing and having fun.” This evening the twin girls from next-door came over and the three of them enjoyed a variety of what you would expect from kids creating fun times. And friends from work stopped by with dinner and we all enjoyed conversations, laughter, and playtime.
His beautiful day began first thing this morning when he woke up. He was “bright eyed and bushy tailed.” Nicholas’ energy, enthusiasm, joy, and his increased strength was on display all day. We know what we hear from a medical perspective, and we know what is possible through God—and through God is the answer. In fact, the continued answer because we, certainly, see blessings of His love upon Nicholas continually unfolding.
We have said it time and time again, we trust God and His word. It is not just hope that we have for Nicholas to be cured, it is simply love and the manifestation of what is true through spirit and love. And yes, we have said these words time and again as well, however, what is true is true yesterday, today, and tomorrow.
January 12, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Wednesday, January 11, 2006 11:59 PM CST
CYTOMEGALOVIRUS IS NEGATIVE AGAIN—YES
CMV/PCR lab work from this past Saturday’s blood draw was completed today and it was negative for the Cytomegalovirus. Now that there were two consecutive negative readings, it was declared that Nicholas has overcome the virus.
CONSULTATION AT LPCH, AND NICHOLAS
Talking with Nicholas’ oncologist and BMT doctor at LPCH brought a lot of clarity to the medical aspects of “now what.” We are so blessed to have them express and truly be an advocate for Nicholas. Yes, we know that the doctors have their doctor-role. And yes, they truly express and show up as an advocate for Nicholas. Of course, mom & dad are his advocates and it is comforting to see the doctors show up the way that they have with Nicholas. More importantly, we are thankful that God is his advocate, his Father.
Next Wednesday, a bone marrow aspirate and lumbar puncture will be performed to check the status of Nicholas’ bone marrow and spinal fluid. Simply stated, the doctors are checking to reveal that Nicholas is still free of cancer. As stated in yesterday’s journal, we understand “medically” the prognosis. And more importantly we have—and we are sure that you have too—seen Nicholas rise above a lot of challenges and expected pitfalls.
The manifestation of Love has enabled Nicholas to shine even during some expected dark times. Have you seen his shine? Have you seen his smile, his glow, his expressions and actions of love and caring about others…? It is not just about putting forth an effort that mom & dad want him to do to approach all of this stuff being positive in thought. It is about knowing that Nicholas is in God’s hands. He is in the hands of healing. Although it is hard to understand all that Nicholas has gone through, we absolutely know that Nicholas is God’s son and because of His omnipotence, omniscience, and omnipresence we feel God’s presence and love shaping Nicholas to continue his work for Him.
While we remain so thankful that the doctors are here for Nicholas, we pray that they are receptive to God’s guidance of their hands and minds. We feel that it is so important to say what we feel and/or see. We have told the doctors about our faith and full confidence in God’s love for Nicholas. Can we be witnessing a miracle? Are we witnessing something special? We feel that we are witnessing God’s love, and we give all the glory to God for His spirit and love is in operation and nothing, absolutely nothing can suppress Him. We more than believe, we trust Him and His words, including “Look unto me and be ye saved.”
Peace, confidence, and comfort is what God has for us—what He is giving us. We are so thankful for His love.
MORE GOOD STUFF
Today, the dose and frequency of several medicines were reduced. Although the doctors stated that Nicholas has experienced chronic GVHD of the skin, amazingly his skin looks very good. It is soft and supple, a good thing.
SHOPPING NOT JUST TO BUY, ANOTHER WAY OF BEING TOGETHER
For the first time since the November of 2004, Nicholas was in a toy store. Tonight he was in Toys R Us spending time (really, not money). It may sound silly, however, it felt wonderful seeing him spot specific things and telling us about them (how he knew what they were, what he liked about them, and sharing a reflection of his connection). It is so wonderful seeing his eyes light up and his spirit shine.
Shopping, as many of you know, is not just about buying. Shopping can be about being around friends and/or family enjoying another way of just being together. And mom & dad sure did enjoy our time with Nicholas at Toys R Us—our time just being together in another way!
January 11, 2006 Blood Counts:
WBC: 2.7
HGB: 9.5
PLTs: 148
ANC: 1,710
Tuesday, January 10, 2006 11:59 PM CST
BACK HOME FROM THE UNIVERSITY OF MINNESOTA CONSULTATION
Safely arrived at the San Francisco International airport around 1:00 PM. Nicholas and mom & dad are more than tired; we are mentally and physically exhausted.
DISCOURAGED, DISAPPOINTED? We understand that because of the Hypodiploid diagnosis on top of the original Acute Lymphoblastic Leukemia, and that the relapse—and so soon—after the BMT, creates the worst possible prognosis. Based on this understanding, we understand the “medical” thinking of the oncology community and the more than painful prognosis. A prognosis that leads to virtually no “medical” hope.
Although we clearly understood the painful-awfully-terrible “medical” prognosis even before going to the University of Minnesota consultation, we were hopeful to hear something “novel” or a protocol or process that would give Nicholas just that, hope for a medical cure. Remember, the BMT was with a donor providing an amazing 6 for 6 match. Remember, Nicholas experienced pretty bad GVHD and with the relapse it appears that Nicholas did not get the desired GVL effect from the GVHD. So something different should be done. We have looked at possibilities ranging from St. Jude, Duke University, and the University of Minnesota. Duke and the University of Minnesota because their expertise is with cord blood transplants—something a little different than a standard BMT.
The consultation was discouraging/disappointing, not because of the people or the hospital, because “medically” the cord blood process is one that also leads to virtually no “medical” hope. Here too, they have significant concern about Nicholas just surviving pre-conditioning treatment. And, here too, along with ours and your prayers and all of our actions, the following songs/poems provide words that are encouraging because of our love and trust in God. The songs/poems are other ways for us to constantly be close to Him. And recognizing His omnipotence, omniscience, and omnipresence we turn everything over to God for His work is the foundation of life.
- Song, “He’s My Son” (January 6, 2006 journal entry)
- Song, “His Eye Is On The Sparrow (December 3, 2005 journal entry)
- Poem, “My Beautiful Son” (October 7, 2005 journal entry and above on the Home Page)
Nicholas’ favorite thing to do since the diagnosis has been to cry & pray—being closer to God and speaking to Him. Nicholas “trusts” God and he is so patient. PLEASE, PLEASE, PRAY with us for the manifestation of love and spirit to reveal all that is true through God: We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. That God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in Nicholas.
NOTE: Nicholas has been vomiting one to two times a day, and he has not had an appetite for several weeks. So many different things going on can cause the vomiting and lack of an appetite… The ups and downs are so hard to experience. However, we are so thankful that God provides for Nicholas—how else would you explain his ability to, almost like an on button, to be “playing and having fun” with so much energy and enthusiasm under all of the different conditions he is experiencing.
LPCH DAY HOSPITAL APPOINTMENT TOMORROW (Wednesday)
We will be in the Day Hospital Wednesday for lab work, exam, and more consultation. The results from Saturday's CMV/PCR lab work should be complete and hopefully it will be negative (making it two negative readings in a row enabling us to declare that Nicholas has overcome the Cytomegalovirus).
REACHING OUT AND COLLABORATING
Along with LPCH collaborating with other hospitals and doctors, the parent community worldwide is amazing and there are specific doctors from hospitals that are consistently recognized. Before Nicholas' transplant we communicated with one of these specific doctors from Duke—she was amazingly helpful. Today mom & dad are sending her what we will call a "parents' brief" asking for input now based on how things have unfolded (before the BMT her helpful response was amazingly within 24 hours). We are also talking specifically with Children's Hospital Oakland. So by the end of this week we pray for clarity in listening to our Father, God. And we pray for understanding, strength, and wisdom to follow His path—a path that we are confident is right because we trust Him to lead Nicholas and us in the right direction. Because of love...
Monday, January 9, 2006
Our appointment at the University of Minnesota Medical Center was 8:00 AM CST (6:00 AM PST). The overall appointment, consultation, and tour were about 3 hours (please refer to the January 10 journal for the consultation summary).
Mom & dad were very, very discouraged/disappointed with the consultation outcome; however, our emotions and pain were placed aside because Nicholas had a chance to just have some fun in the snow. So we went back to the RMH, changed into snow gear, and off we went into the park between the RMH and the University of Minnesota Medical Center.
PLEASE CLICK ON VIEW PHOTOS AND CLICK ON THE THIRD ALBUM UNDER LINKS on this Home Page for current pictures including the Minnesota trip—lots of photos in and out of the snow. From snowballs, to sledding, to snow angels, to fun in the RMH…
In the snow, Nicholas & dad had a plan to throw snowballs—of love—at mom. And that is what Nicholas did, he threw snowballs at mom. So he was two-for-two, he hit mom & dad with snow. And dad got Nicholas back in a way, while pulling the sled carrying Nicholas, dad ran through some very powdery snow so as the sled was sliding through the snow and making soft, but fast, turns snow was kicking up into Nicholas’ face. And Nicholas loved it. Mom & dad loved seeing Nicholas laughing, playing, and simply loving having fun!
Rather than quotes from Nicholas, this time, as above please click on View Photos, and the third album under Links scrolling toward the end of the album to get a VISUAL FLAVOR OF WHAT NICHOLAS WAS FEELING.
Sunday, January 8, 2006
Safely arrived in St. Paul-Minneapolis (Twin Cities), Minnesota, around 5:00 PM (CST). And Nicholas, for the first time ever, saw, felt, and touched snow. It was lightly falling as we arrived in Minnesota.
Staying in the Ronald McDonald House (RMH) overlooking a park that leads to the University of Minnesota Medical Center. As we were walking up to the RMH, dad knelt down and Nicholas scooped up some snow and “slushed” it onto dad. One down and one to go (please refer to January 9).
With all of its Christmas lights, the RMH looks like a gingerbread house. Our room is on the third floor so we have a beautiful view of the snow falling.
January 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, January 10, 2006 11:59 PM CST
BACK HOME FROM THE UNIVERSITY OF MINNESOTA CONSULTATION
Safely arrived at the San Francisco International airport around 1:00 PM. Nicholas and mom & dad are more than tired; we are mentally and physically exhausted.
DISCOURAGED, DISAPPOINTED? We understand that because of the Hypodiploid diagnosis on top of the original Acute Lymphoblastic Leukemia, and that the relapse—and so soon—after the BMT, creates the worst possible prognosis. Based on this understanding, we understand the “medical” thinking of the oncology community and the more than painful prognosis. A prognosis that leads to virtually no “medical” hope.
Although we clearly understood the painful-awfully-terrible “medical” prognosis even before going to the University of Minnesota consultation, we were hopeful to hear something “novel” or a protocol or process that would give Nicholas just that, hope for a medical cure. Remember, the BMT was with a donor providing an amazing 6 for 6 match. Remember, Nicholas experienced pretty bad GVHD and with the relapse it appears that Nicholas did not get the desired GVL effect from the GVHD. So something different should be done. We have looked at possibilities ranging from St. Jude, Duke University, and the University of Minnesota. Duke and the University of Minnesota because their expertise is with cord blood transplants—something a little different than a standard BMT.
The consultation was discouraging/disappointing, not because of the people or the hospital, because “medically” the cord blood process is one that also leads to virtually no “medical” hope. Here too, they have significant concern about Nicholas just surviving pre-conditioning treatment. And, here too, along with ours and your prayers and all of our actions, the following songs/poems provide words that are encouraging because of our love and trust in God. The songs/poems are other ways for us to constantly be close to Him. And recognizing His omnipotence, omniscience, and omnipresence we turn everything over to God for His work is the foundation of life.
v Song, “He’s My Son” (January 6, 2006 journal entry)
v Song, “His Eye Is On The Sparrow (December 3, 2005 journal entry)
v Poem, “My Beautiful Son” (October 7, 2005 journal entry and above on the Home Page)
Nicholas’ favorite thing to do since the diagnosis has been to cry & pray—being closer to God and speaking to Him. Nicholas “trusts” God and he is so patient. PLEASE, PLEASE, PRAY with us for the manifestation of love and spirit to reveal all that is true through God: We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. That God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in Nicholas.
NOTE: Nicholas has been vomiting one to two times a day, and he has not had an appetite for several weeks. So many different things going on can cause the vomiting and lack of an appetite… The ups and downs are so hard to experience. However, we are so thankful that God provides for Nicholas—how else would you explain his ability to be “playing and having fun” with so much energy and enthusiasm.
Monday, January 9, 2006
Our appointment at the University of Minnesota Medical Center was 8:00 AM CST (6:00 AM PST). The overall appointment, consultation, and tour were about 3 hours (refer to the January 10 journal for the consultation summary).
Mom & dad were very, very discouraged/disappointed with the consultation outcome; however, our emotions and pain were placed aside because Nicholas had a chance to just have some fun in the snow. So we went back to the RMH, changed into snow gear, and off we went into the park between the RMH and the University of Minnesota Medical Center.
PLEASE CLICK ON VIEW PHOTOS AND CLICK ON THE THIRD ALBUM UNDER LINKS on this Home Page for current pictures including the Minnesota trip—lots of photos in and out of the snow. From snowballs, to sledding, to snow angels, to fun in the RMH…
In the snow, Nicholas & dad had a plan to throw snowballs—of love—at mom. And that is what Nicholas did, he threw snowballs at mom. So he was two-for-two, he hit mom & dad with snow. And dad got Nicholas back in a way, while pulling the sled carrying Nicholas, dad ran through some very powdery snow so as the sled was sliding through the snow and making soft, but fast, turns snow was kicking up into Nicholas’ face. And Nicholas loved it. Mom & dad loved seeing Nicholas laughing, playing, and simply loving having fun!
Rather than quotes from Nicholas, this time, as above please click on View Photos and onto the third album under Links to get a VISUAL FLAVOR OF WHAT NICHOLAS WAS FEELING.
Sunday, January 8, 2006
Safely arrived in St. Paul-Minneapolis (Twin Cities), Minnesota, around 5:00 PM (CST). And Nicholas, for the first time ever, saw, felt, and touched snow. It was lightly falling as we arrived in Minnesota.
Staying in the Ronald McDonald House (RMH) overlooking a park that leads to the University of Minnesota Medical Center. As we were walking up to the RMH, dad knelt down and Nicholas scooped up some snow and “slushed” it onto dad. One down and one to go (please refer to January 9).
With all of its Christmas lights, the RMH looks like a gingerbread house. Our room is on the third floor so we have a beautiful view of the snow falling.
January 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Saturday, January 7, 2006 11:59 PM CST
SATURDAY DAY HOSPITAL STAY
Nicholas slept the entire 4 ½ hours in the Day Hospital today for labs draws (blood) and the IVIG (immune boost) treatment. He did fine, no medical issues to manage while receiving the treatment.
Referring to the blood counts (above or below), the Platelets are continually rising toward the target range—we are so happy to see this development before our eyes. Now we are looking forward to the CMV/PCR results that should be ready late Monday or Tuesday.
ON OUR WAY TO THE UOM TOMORROW MORNING (SUNDAY)
Very early tomorrow morning, we will be on our way to the UOM. A private flight was not available through several different sources that provide medical flights so we are prepared to provide the protection necessary for Nicholas on a commercial flight. (Below in this journal we will talk about all the love you provide in our lives. And although we are not flying privately, we are so grateful for a friend from dad’s childhood who has been involved with the lives of our broader family since then, and who was willing to secure a private flight for us.)
We will arrive in Minnesota tomorrow around 4:30 PM CST, which is the time the sun should be setting. We understand the high temperature is expected to be around 30 degrees, and the low 16 degrees so at 4:30 it’s going to be chilly. Nicholas and mom & dad will probably rest once we get to the hotel and complete our preparation for the Monday morning consultation.
After the consultation Monday, there should be about 4 hours of daylight so we are planning to take Nicholas somewhere to have a short play-date with some snow. Then we plan to have a warm, cozy evening before another nights sleep in Minnesota.
Tuesday morning we will fly back to California.
FRIENDS
Nicholas had a lot of friends around today including a stop after the Day Hospital in Millbrae and visitors to our home this evening. After resting most of the day, he was full of energy and spirit tonight. His walking…what a pleasure to see him up on his own. Please click on View Photos to see one of the pictures from tonight, and a few others are on the current photo album.
ANGELS EVERYWHERE
While all of mom & dad’s energy and time are naturally focused on comforting and loving Nicholas as well as doing EVERYTHING we can for Nicholas, all of you have provided so much to Nicholas as well as mom & dad. You have loved us in ways that truly have helped to make this journey easier for mom & dad. Of course, not easy in terms of easing the hurt and pain associated with all that Nicholas is experiencing. However, easier in terms of so many daily responsibilities and activities that mom & dad would normally have the ability and means to do over the last 414 days if our lives had not been shattered. Shattered, changing EVERYTHING about our lives including daily responsibilities and activities.
We say angels EVERYWHERE, because friends ranging from those new (Diablo Valley Montessori School) into our lives, those from our employer (AAA), to those that we have known since mom & dad—ourselves—were kids have loved our family in amazing ways. We can refer to every letter of the alphabet and you can think of all the names beginning with those letters, and then you would envision the angels—you—that are blessings in our lives.
We love you—all of you—so very, very much. Thank you for what you do to help make things easier on us, and help to make the daily responsibilities and activities of our lives somewhat consistent with “normal.” We are charting new "normals" and that is okay, we trust God.
We praise God for His love, His love guiding us and providing you into our lives!
Note: We may not be able to update the journal Sunday and Monday nights; however, the guestbook is always open and we always welcome you to share your thoughts on the guestbook—they are very, very helpful to all of us.
January 7, 2006 Blood Counts:
WBC: 4.8
HGB: 9.2
PLTs: 122
ANC: 2,520
___________________________
Friday, January 6, 2006 11:59 PM CST
NICHOLAS
Nicholas had a nice “sunny” day. This afternoon we went into the back yard and to the side play area. He was swinging on swings, sitting/standing on the top floor of the play structure guiding his remote control cars down below, sliding down the slide, and just spending time outside feeling the warmth of the sunshine & the comfortable breeze. Saying hello and talking with neighbors from his “look-out” tower, it felt so nice.
EARLY DAY HOSPITAL APPOINTMENT TOMORROW
We will be at LPCH Day Hospital tomorrow morning at 9:00 for IVIG (immune booster) and lab draw to determine blood counts, check chemistry levels, and the CMV/PCR level—for hopefully a second-consecutive negative reading for CMV. If so, thankfully, the doctors will declare that Nicholas has overcome the Cytomegalovirus and some of the additional medications we had to start will be reduced.
FLIGHT TO THE UNIVERSITY OF MINNESOTA (UOM)
We will fly out Sunday morning to the UOM for Monday’s consultation, and we will return Tuesday morning. After arriving back into California, we will contact LPCH before leaving the airport to obtain the results from this Saturday’s CMV/PCR level. If it is positive, we will have to go directly to LPCH Day Hospital for continued treatment with Cytogam. If negative, Nicholas will have a day off and we will prepare for the debrief that is scheduled to take place Wednesday.
SONG—HE’S MY SON
Following are the words and link to a song, “He’s My Son.” Mom first saw this as a poem months ago and tonight we came across it as a song. Please pray with mom & dad and read “He’s My Son” or place “hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html” into your browser to hear the song.
He’s My Son
Down on my knees again tonight,
Hopin' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You
Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone
Can You hear me?
Can You see him?
Please don't leave him,
He's my son
January 6, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Thursday, January 5, 2006 11:59 PM CST
CMV IS NOW NEGATIVE—HAPPY, HAPPY EVENING
Results from yesterday’s CMV/PCR lab draw to check its level reveal that the Cytomegalovirus is now negative. Remember, on December 27 as we were on our way home from the hospital (after being admitted since December 25) we were told to turn around to be admitted back into the hospital because lab results that came in late revealed that the CMV was positive.
Before we celebrate getting through this barrier, the doctors want to have two consecutive negative readings. So the next CMV/PCR lab draw will be this coming Saturday morning; results should be available on Monday. So on Tuesday morning after returning from Monday’s consultation at the University of Minnesota (UOM), we will confer with LPCH about the CMV results to determine if we need to go into the Day Hospital that day for Cytogam if the CMV is not positive. If it is negative again, we will celebrate overcoming this barrier.
And if it is negative (we are so very thankful these blessings), we will continue to administer the Gancyclovir via IV at home for a couple of weeks. Also, the Cytogam will no longer need to be administered and its place Nicholas will receive IVIG (an immune booster) once per month. The IVIG will be administered even though his blood counts have been coming up—the CMV treatment can negatively affect the blood counts.
***Please click on View Photos to see Nicholas receiving the Pentamidine before the Cytogam today***
PLANNING A DEBRIEF AFTER TUESDAY’S UOM CONSULTATION
Tentatively, next Wednesday we will meet with Nicholas’ doctors at LPCH to debrief the information we will have learned from the UOM. The debrief will include the oncologist and bone marrow doctor. We continually pray to God to guide all of the doctors and staff, guide their thinking andtheir “hands.”
In spite of the statistics that are gently communicated to mom & dad, we focus on only one thing and that is our Father, God. For his omnipotence, omniscience, and omnipresence to manifest in Nicholas. To deliver Nicholas, healed according to His word.
WORKING ON THE FLIGHT TO UOM
There are several organizations that provide flights for patients that need to travel for medical reasons (like the UOM consultation). Organizations like Angel Flights, Corporate Angel Network, National Patient Air Travel Helpline, etc. Our focus is on securing a flight through one of these organizations because most are private flights that would provide Nicholas with a better air travel environment relative to not having to fly commercially with many, many travelers and compromise the air quality in the plane. If necessary, of course we will have to book a commercial flight, and hopefully we can secure one through one of the programs that provide discounts for patients in Nicholas’ situation.
NICHOLAS
Do you remember months ago when we talked about how Nicholas was overcoming obstacles and breaking through barriers? How he was opening up like a flower, like the sun emerging from the clouds! Looking good and warming the hearts of those engaging with him. Well, today was amazing. He proactively walked more with even greater ease, his appearance was vibrant and glowing, and he ate tonight. He had steak, green beans, biscuits, and milk. We do not take anything for granted, and we take everything as a blessing!
***Please click on View Photos to see Nicholas—vibrant and glowing, even in the Day Hospital. NOTE: Do you notice the apparent freckles on Nicholas’ skin? They are not freckles, they are dark spots on his skin from the skin GVHD (it may take a while for the skin to clear up).***
January 5, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
Wednesday, January 4, 2006 10:49 PM CST
SNAPSHOT OF THE DAY:
ULTRASOUND AND BILIRUBIN
The Bilirubin (liver marker) was high again today, as it has been for over a month. Remember, the December 27 CT scan was clear (good) and an ultrasound performed today revealed that all organs are normal (great). Along with the two liver enzymes (ALT and AST) being in range, the doctors are now not concerned that the Bilirubin has been high. It would be a concern if Nicholas were to be receiving chemotherapy at this time.
CYTOMEGALOVIRUS
The CMV level and PCR titers (numbers) were drawn today, however, the results were still pending at the end of the day. Tomorrow we will be back in the Day Hospital so we will then learn the level—praying that it comes down and is revealed to be normal. (Remember, the August 18, 2005 journal provides more information about CMV.)
PREDNISONE
The steroid Prednisone that has been tapered all the way down to 2.5mg once per day will not be stopped for a couple of weeks. Because of the skin GVHD, although Nicholas’ skin is looking and feeling really good, the doctors do not want to stop the Prednisone yet. Remember, Nicholas has been on Prednisone virtually since the April 7 BMT so going slow with the taper is the right thing to do according to Nicholas’ doctors.
CONSULTATION AT THE UNIVERSITY OF MINNESOTA
The consultation at the University of Minnesota (UOM) will take place this coming Monday, January 9. We are working on getting a flight for Sunday and returning Monday after the 8:00-11:00 consultation. (Tuesday, January 10 we will be back at the Day Hospital of LPCH for Cytogam.) The December 29 journal lists a few key questions as we gather information on UOM’s perspectives on curing Nicholas.
First, we pray, live for God, and listen for His direction—trusting that He will light Nicholas’ path
DAY HOSPITAL TOMORROW FOR CYTOGAM
Tomorrow we will be at LPCH for Cytogam, and Pentamidine {administered via a mist through a mask for about 5-10 minutes once per month (and will be for a long period of time) to prevent pneumonia}. It will be the third day in a row that we traveled back and forth to LPCH.
NICHOLAS
The last several weeks Nicholas has been tired more than ever. And the last couple of days he has wanted to sleep most of the day; however, he has shown the ability to quickly raise his energy level and spirits when engaging with others or seemingly when he wants to be alert and energetic.
January 4, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Tuesday, January 3, 2006 11:59 PM CST
TODAY’S DAY HOSPITAL APPOINTMENT
We were at the LPCH Day Hospital from 3:30 PM to 8:55 PM; Nicholas slept virtually the entire time after being pre-medicated. Thankfully, once again the Cytogam infusion was un-eventful (no negative reactions). We continually pray for the treatment to do its job of combating the Cytomegalovirus.
Blood counts seem to be rising into range (see above for target ranges). This is good, and our first thought when his WBC rises is to pray that it is not rising as a result of the leukemia coming back. And we know and constantly pray for love & spirit to be operating in Nicholas, for the purity and perfection of God’s work to manifest itself in Nicholas.
TOMORROW’S EXAMINATION (WEDNESDAY)
Linking back to the December 23, 2005 journal, the Total Bilirubin number is still high, out of range. Remember, the Bilirubin is a liver marker. Although the other two liver markers (AST and ALT) are in range, an ultrasound most likely will be performed to assess the liver function.
Tomorrow’s appointment will be with Nicholas’ LPCH oncologist and bone marrow transplant doctor. Other than assessing the liver function, this will be a general appointment to examine Nicholas and talk about a range of things including the following:
Prednisone (steroid): Now that we have been down to .25mg once per day we will discuss discontinuing the steroid.
Cytomegalovirus (CMV, and the reason last week’s hospital stay was extended and the reason we had to postpone last Thursday’s consultation at the University of Minnesota): The CMV level will be determined to assess progress of the treatment. The Day Hospital schedule for the Cytogam treatment has changed. We will be back in the hospital this coming Thursday and Saturday.
Consultation at the University of Minnesota (UOM): Based on CMV treatment, we will discuss the timing to travel to the UOM. The thinking now is that next Monday might be the window of opportunity.
UNIVERSITY OF MINNESOTA CONSULTATION
We talked with the UOM while traveling to LPCH today for the Day Hospital appointment, and expect a call from them tomorrow morning to coordinate timing for the consultation. In the meantime, the UOM is doing all the behind the scenes work in anticipation of performing a cord blood transplant on Nicholas. This is being done because “time” is a critical factor on any next steps. So if we do decide that the UOM can offer a medical chance for a cure, all the behind the scenes work will just about be completed, including identifying the desired type of match.
NICHOLAS
Although we were away most of the day/night for the Day Hospital appointment, Nicholas had a good day. As always, conversations Nicholas has with mom & dad are truly a learning experience for us. There are so many things Nicholas remembers and or learned that enable him to generally link topics of discussion with something else. Whether it is a hospital term, something learned from school, or something he has picked up by just being a child absorbing his surroundings, we find ourselves learning from him.
Nicholas had another day where he is attempting to and is eating something—this warms our hearts to see him eat. Talking with other parents of children who were on Prednisone, we are told that when tapering down or off their kids did not have an appetite for a long time. And he only vomited once and that was this evening while taking medicine.
He is still working on walking with greater ease and overall his spirits are fairly high and laughter abundant.
January 3, 2006 Blood Counts:
WBC: 6.5
HGB: 9.4
PLTs: 95
ANC: 4,080
___________________________
Monday, January 2, 2006 10:24 PM CST
NICHOLAS HAD A GOOD DAY
Nicholas had a better day in terms of eating, and without feeling nauseous or vomiting. A few days without being in the hospital or day appointments in the clinic or Day Hospital have been nice in terms of being able to be home getting some rest. In the hospital mom & dad are on such a high level of alert that the rest we do get is momentarily and consumed with lots of thoughts about all this “leukemia and bone marrow stuff.” We know God’s presence is with Nicholas, as well as us, and we want to be “present” doing anything and everything that we can.
HOLIDAY SURPRISES AT DINNER
Remember the December 22, 2005 journal, and the transformation of our home into a Winter Wonderland by friends & neighbors? Another surprise was the decoration of our dining room table into a picturesque holiday setting. Tonight before dinner we opened cylinder-shaped decorations tied on both ends (crackers). Inside were colorful paper crowns (you know, like for a prince, princess, king, or queen), small toy surprises, and a few jokes on scrolls. Following are a couple of the jokes:
Q: What do they sing at a snowman’s birthday party?
A: Freeze a jolly good fellow!
Q: What did the mommy broom say to the baby broom at night?
A: Go to sweep my little one!
Nicholas had fun…he was saying/singing: “Happy, happy fun time!”
CLINIC TOMORROW (TUESDAY)
Tomorrow, Nicholas will be in the Day Hospital at LPCH for the continued Cytogam treatment. We expect to be home by 9:30 PM.
January 2, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
___________________________
Sunday, January 1, 2006 11:59 PM CST
Nicholas woke up having a sore stomach and he is still having nausea, he vomited two times today when taking his oral medicine. To begin the New Year, Nicholas rested the entire day. Mom & dad also rested the entire day, a combination of physical and mental exhaustion.
We understand the prognosis and what to expect as discussed with Nicholas’ doctors and based on being aware of other beautiful kids with leukemia. We also know the omnipotence, omnipresence, and omniscience of God! And we truly believe in His Word knowing that God can deliver Nicholas free from leukemia because He says it has no place in His creation, Nicholas.
So while these days frighten us, we constantly lean on God for his comfort and calming of our thoughts as He lights Nicholas’ path.
On Tuesday Nicholas will be back at LPCH Day Hospital for Cytogam, examination, and we should receive details from LPCH and UOM regarding the UOM consultation date. (Remember, the CMVpositive reading that surfaced last Tuesday night prompted postponement of the consultation that was to take place last Thursday. The thinking is it will take place by January 6.)
January 1, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA
