Today after a discussion with one of Brian's previous pediatric oncologists, it seems that we are all on the same page for the best treatment, baring any unexpected test results from the bone marrow and PET scan.
Last night I searched through the CDC data base to read any trial programs that might apply to Brian. Out of 137 applicable ones, there were about 6 to consider, but none that we feel are viable at this time. Some of the reasons were both location, and toxicity.
Because Brian does not have any health insurance, (he has applied for medicaid) it looks like we will be unable to consider an out of state hospital such as Robert Wood Johnson University Hospital where he was treated the first time. That is unfortunate for several reasons including their excellent reputation.
1. They are the closest to us travel time wise. (approx. 2 hrs.)
2. Scott's work is much closer to there, enabling him to visit more often. (about 1/2 between home and the hospital).
3. We are intimately familiar with the area and all of the services.
4. We would be working with a medical staff that has know Brian for 10 years and has a personal vested interest in him.
5. SOUTHWEST BURRITO (because yes, when you are living in a hospital for 30-100 days you should be able to get decent food to live on....).
6. Personal support system of friends because we lived in that area for 23+ years.
Our other choices in transplant centers are being evaluated now by Scott, Brian, Stephanie and myself. As always, the four of us work together to make the best choices under the worst conditions.
As a sidebar, Stephanie has decided at this time to put off further schooling so she can contribute her salary to the overwhelming expenses we face. Aside from Brian's physical and emotional sacrifices in facing childhood and now young adulthood cancer, no one has made more sacrifices then Stephanie for Brian's well being. In both having to grow up fast, and in choosing to put off her future plans. She is a young woman to be proud of, especially under the worse circumstances.
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