Derek was transferred to the ICU overnight for respiratory distress. He is now on a CPAP machine that will hopefully open his airways again. Though the headgear he has to wear and the constant
Saturday, May 14, 2016
So things have not gotten better for Derek since my last post. Yesterday was crazy. He got blood and platelets in addition to several lengthy electrolyte drips and new medications. Because Derek has no white cells, he has nothing to fight this RSV. The doctors decided at last to give him IVIg in the hopes
Friday, May 13, 2016
Thursday night Derek had a CT that showed considerably more lung congestion. They now say he has bronchial pneumonia. It is not what we wanted to happen, but he has nothing to fight this bug with. Friday, was quite a day. The morning started with a crowd of doctors coming in the door of
Thursday, May 12, 2016
Derek is still spiking fevers of 103*-104*F whenever the Tylenol wears off, which means it is happening four or five times a day. His breathing has gotten worse throughout the week, and now he is on oxygen around the clock. When not on oxygen, his saturation level dips to the low 80's which
Monday, May 9, 2016
When we checked in to the ER yesterday, Derek's labs showed his hemoglobin was only 6.3. So after they transferred him to the oncology unit, he received blood which helped him feel a little bit better, though he continues to have a constant dry cough. Today the nose swab culture came back
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
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