Today was a very long but productive day. We awoke early to drive back from Humboldt County so we could make Adrienne's appointment with Dr. Rob Negrin, head of BMT at Stanford. We met for over an hour and discussed all possible treatments, some of which are available today and some of which are in clinical trial. Until Adrienne turns 18 in August, most trials are not available, as we thought. Dr. Negrin thinks we should go ahead with donor lymphocyte infusions (DLI) at a low dose and escalate to a higher dose if Adrienne's disease progresses. At the low dose he proposed, he has not seen any graft-vs-host disease, though other institutions have reported some. He proposed that Adrienne complete the current course of chemotherapy and then go ahead with the DLI. We need to talk with Adrienne's oncologist to figure out what the exact timing will be.
We had a great time at the Avenue of the Giants 1/2 marathon this weekend. I had my best time ever (2:54.34), though I'm quite tired and sore today. My goal is to do a six hour marathon in Anchorage in June. Adrienne worked at the TNT checkout table for the day. We were shocked that people came to her and complained about other TNT people on the course. One man said that a TNT person was too loud! The victory party was really fun...great food, great music, and lots of dancing. I enjoyed watching Adrienne dance and just have a good time.
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1 comment:
Hi! Just wanted to let you know that I think about you two often. Missing TNT too. Glad you had a good time in Humbolt. Hope to see you soon!
Cathryn
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