A week ago, Derek had his Hickman central line placed. The procedure went exactly as planned with no complications. Thanks for your prayers for this surgery. We did have a little scare later in the week when an EKG showed
Stanford Week 1 - April 18, 2016
One week ago tonight, Derek spent his first night in the Lucile Packard Children's Hospital at Stanford. He began the clinical trial on Tuesday with the first dose of the study drug Selinexor. In the last week, there haven't been
He's In!!! April 11, 2016
What a day this has been. We spent the morning at the hotel waiting. Waiting for a phone call that would let us know whether we got into the Ronald McDonald House (RMH) close to the hospital. Waiting for a phone call regarding appointment times. But most of all we were waiting for a call from
Into the Unknown - Sunday, April 10, 2016
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
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