Sunday, May 8, 2016

This afternoon Derek spiked a fever. That means he has now been admitted back into the hospital after spending the afternoon and evening in the ER. He is severely neutropenic, so a fever can be very serious very fast because he has nothing with which to fight. Please keep him in your prayers. Thank you!

A Tribute to the Mothers of the Ronald McDonald House

This is a tribute to the mothers of the Ronald McDonald House - mothers whose stories are each different but who share a common purpose for being here. This purpose hinges on the fact that they are mothers with courageous hearts. From all over the country, they are here, all fighting for the lives

Stanford Weeks 3 and 4 Update - May 7, 2016

It's a little hard to believe it has been four weeks since Derek and I arrived at the Lucile Packard Children's Hospital at Stanford to begin a clinical trial. During week three, Derek was hospitalized for high dose chemo. Thankfully,

Stanford Week 2 Update, April 27, 2016

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 on