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,
and in direct answer to a very specific prayer, he experienced none of the common side effects that include fever, nausea, and mouth sores. It did drop his blood counts significantly as expected. He became severely neutropenic (ANC is zero) and needed both blood and platelet transfusions. In spite of it all, he felt remarkably good. His giggle even returned by the end of the week after an absence of more than two months. His giggle is such a good indicator of how he feels overall that his previous doctor used it regularly to judge his condition. It was such a relief to hear it again, bubbling up from deep inside when something tickled his funny bone. He was released from the hospital Sunday evening to continue treatment as an outpatient.

When we arrived back at the Ronald McDonald House Sunday evening, there was a very large package waiting for Derek. Some very kind and generous family and friends purchased LEGO Mindstorms for Derek. If you've been following Derek's story, you know that LEGOs have helped him get through his years of treatment. Robotics is something he has not done at all, yet, and his is absolutely thrilled. I send a huge THANK YOU to all those who contributed.

This past week he received the last two doses of the study drug Selinexor. It quickly replaced his giggles with intense nausea, loss of appetite, and fatigue. He has spent much of this week sleeping. His electrolytes have been out of balance and he has needed sodium and potassium drips on several days. As I write, he is getting a saline bolus to bring his sodium level up. Hopefully tomorrow he will begin to feel better, though it may take two more weeks for his counts to recover.  He has developed a cough, though no one is sure what is causing it. A swab culture was negative and chest x-Ray was clear. Would you pray that he will get over his cough quickly? Hopefully we can keep him from contracting a bug while his immune system is so low, and we can remain outpatient at the Ronald McDonald House.

In a week and a half, Derek will have scans and tests to determine how he has responded to the course of treatment. His left eye has dropped back down significantly allowing him to focus both eyes together again. His cheeks are mostly soft again, and the nodes in his neck have reduced a bit in size, so we know he is having a response. We just are unsure if it will be enough to put him in remission. The course can be repeated if needed. The scans on the 17th will show if that is needed. Thank your for your continued prayers on Derek's behalf.