When I last wrote, we were exploring treatment options for Derek around the country, as no one at City of Hope or at Loma Linda really had any options we hadn't already tried. We asked St. Jude's, but were told Derek didn't qualify for any clinical trials there. We talked to a friend at the NIH, but also
Friday, March 18, 2016
So how is Derek? I am frequently asked that question, and I’m
not sure how to answer. He is NOT ok,
but he is doing ok for not being ok. The steroids, which ended early last week,
produced a good appetite, but his energy level has been very low. He developed
painful mouth sores that made it difficult to eat. Fortunately those are gone
now, but he has nerve pain in his legs and sometimes
Sunday, March 6, 2016
On Friday, we started a protocol that hopefully will start
to bring the lymphoma under control. Derek had to have intrathecal chemo under
light sedation so he couldn’t eat before the procedure which was at 2 p.m. Even
though he has been NPO at least 50 times before and two other times already
this week, it does not get easier, especially
Thursday, March 3, 2016
The results are mostly in, and now we know. Derek has T-cell lymphoblastic lymphoma. Good news is it is not in his central nervous system, and initial testing indicates it is not in his bone marrow either. The donor graft from his stem cell transplant is doing its job as far as it can reach. Problem is that it
Monday, February 29, 2016
The raucous mob outside the door make it difficult to sleep.
In the darkness, I can see their
threatening faces pressed against the window and hear their incessant banging on the
door, clamoring for admittance. I know their names. We've met before.
Racing Heart. Anxiety.
Friday, February 26, 2016
Today I had to do the hardest thing I have ever had to do. I
had to tell my nine-year-old son that his cancer is back.
This afternoon my phone rang. The call display said “City of Hope.” “It’s
either someone calling to check on Derek after his surgery yesterday, or it is
someone with news,” I thought. When I heard the urgent voice onA Typical Atypical Night (T+11)
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
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