I arrive at the hospital about 7:30 p.m. It is my
first night back after a week of being home with a cold. I’m happy to see my
boy. Derek is getting a different look now – a transplant look. His eyebrows
and eyelashes are
Transplant - Day 0 (September 10, 2014)
T - 2 or maybe 3 (Sunday, September 7)
T-2 or maybe 3 days and counting. Because Derek's new graft stem cells are coming from Europe, they will take a while to get here, so we are not sure if Derek will get them on September 9 or 10. But tomorrow, somewhere in Europe, the donor will go to
T - 5 Days and Counting (Thursday, September 4, 2014)
Today is T - 5 days and counting. In preparation for stem cell transplant, they count down just like a rocket launch, but instead of hours and minutes, they use days. Each day has specific things that must be done and medications that must be given in order to be ready. It has been a grueling three weeks to get to this point.
We found out today that Derek's stem cell donor is
We found out today that Derek's stem cell donor is
Stem Cell Transplant Excitement?
“Your son is going to have a stem cell transplant and they
have a donor? That is so great! You must be so excited!” someone said to me.
It is a wonderful thing that transplant is an option for him
and that they have found a good donor. We are hopeful. But excited? No. I am
not excited. Horrified would be a better term to describe my emotions. If it
were a new heart or new lungs or a kidney, there might be reason to feel
excited. But stem cell transplant is different. It is
Leukemia Relapse! – How it happened
On Wednesday, June 11, we went up to the mountains for a family
retreat. Thursday, all was normal. Derek played freeze tag and was active and
energetic. Mid day on Thursday, I learned via text message that the son of a
friend of mine had relapsed his leukemia. I was shocked and saddened, imagining
what it must be like to face such news.
Friday morning, June 13, Derek woke up saying his neck hurt
a lot. I thought perhaps he had slept wrong in the motor home or was sore from
playing tag the evening before. It hurt badly enough that he wanted Tylenol,
which I gave him after breakfast. It did not seem to help much and the pain
continued throughout the day. After lunch I gave him more Tylenol and again it
didn’t seem to do much. He was not interested in playing tag and sat with me on
the sidelines. I massaged it gently, but it didn’t seem to help.
During the Friday evening meeting, Derek felt a little warm,
and by the end of the meeting, it was quite obvious he was running a
fever. We went to the motor home and
took his temperature. It was 101.2. We were concerned it could be viral
meningitis, and I called Derek’s doctor. She said to bring him in right away.
So I collected our things and
Halfway
As of today, May 14, 2013, Derek is half way through his treatment for leukemia. One year, eight months, 6 days down. One year, eight months, and six days to go. We are so thankful that he remains in remission. Hopefully the worst half is over. Here is a look back with links to related blog posts. Click on the pictures if you want to see larger versions of them.
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| Two weeks before diagnosis. Making a sheet tent with Kristen. |
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| September 10, 2011, two days after diagnosis. PICC line in. He still does not look sick. Click here to read how the journey began... |
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| September 23, 2011. Hair falling out. We gave him a buzz cut. |
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| Kristen has been such a big support for her brother through the whole journey. |
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| When they discovered Derek had pneumotosis in October, he had to go without eating for 14 days straight. He had actually had it on diagnosis, and had even perforated his bowel, but they completely missed it on the initial CT. When they discovered it five weeks into treatment, they thought it was something new and treated it by making him NPO to rest the bowel. When at last they compared the initial scans, the saw that the perforation had already healed and allowed him to eat again. While he was NPO, he received IV nutrition called TPN. TPN is the color of milk, and the bottom of the bag looked like udders, so we made this cow to hang on his TPN bag on the IV pole and Derek named it "Messy Bessy." To read about the miracle, click here. |
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| Finally back at home, the kids played doctor with new realism. Mr. Bear became the patient complete with port-a-cath accessed, IV line in, and blood pressure cuff. Click here to read about Derek finding the humor in cancer treatment. |
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| Thanksgiving 2011. We were so very thankful for how God had provided for us. And thankful to be home. |
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| Legos became his passion at the hospital and at home, and many friends kept him well supplied. |
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| Then on December 3, Derek developed pancreatitis as a reaction to one of the chemo drugs. Back to the hospital he went again in so much pain they had to knock him out with strong pain killers. He got out of the hospital two days before Christmas. Click here to read about evidences of God's care in the middle of all this. |
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| He was in and out of the hospital from January through March for in-patient treatments. Again, Legos helped keep him occupied. Blog Posts from this time period: Reaching a new normal. I am a Cancer Mom Hope Hope Reprised |
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| In May, Derek lost his first tooth. |
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| By June, he had just completed eight days of cranial radiation which made the rest of his hair fall out. |
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| In August, his energy was starting to return and we enjoyed some outdoor excursions. His hair started coming in again. One year milestone |
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| November, 2012 |
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| He still takes naps occasionally. |
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| Derek's hair came in very curly. |
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| Derek has monthly chemo at the outpatient clinic and oral chemo every day at home through January 2015. |
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| As of May 2013, his energy is good, and he feels pretty good most days. We are so very thankful he is doing so well. Thank you for your prayers and support! |
A Clinic Day
Here is a look at a typical clinic day for us. Derek was scheduled to begin a new round of treatment including an LP with sedation and chemo if his counts were high enough.
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| Kristen exercising while Lindy prances by. |
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A Day of Rejoicing
The small boy marched around the room, clapping his hands while children’s voices sang from the CD player, “Sing the wondrous love of Jesus, Sing His mercy and His grace.”* He sang along, though he could not stay on key. “In the mansions bright and blessed He’ll prepare for us a place.” His mother watched from a distance, quietly amused.
The broad strains of the chorus filled the room as he continued to march. “When we
Haircut - Feb. 15, 2013
I gave Derek his first haircut since he first started losing his hair
nearly a year and a half ago. It probably could have been cut sooner,
but we were all enjoying it too much.
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| Before |
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| After |
New Year Again
One year ago, I wrote a blog post about new things I would do in 2012. Indeed as I re-read them, most of them really did happen, both good and bad. Some of them are a bit hard to judge. At the end of my post, I added a wish list of things I hoped would happen this past year, but over which, I had no control. Here they are with the results:
It Is Blessed… To Receive?
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