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Originally Posted by jayeff
As to the rest, I'm not going to argue with you since I was talking from experience, not opinion, and we went through this less than 4 years ago at the Barnes Jewish Hospital in St Louis (children's hospital and then the adult one). BJH is ranked in the top 10 hospitals in the country, so I doubt their treatment was very different from what most others are likely to offer.
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I'm sorry if that made you mad, that wasn't my intent. For the record, I am speaking from personal experience also, as I just spent the last 14 months of my life taking care of my father, who died from a glioma type tumor. I moved in with him the day we found out and I never spent a night away from him until he passed. This included flying all over the country to various hospitals for clinical trials, including scorpion venom, IL 13, Gleevec, Hydroxyurea, Carboplatin, Avastin, etc., and dealing with Henry Friedman at Duke. I'm also one of the facilitators in the bt support group here, and he received his radiation with a little boy with a brain stem glioma.
While I don't agree on the waiting 6 months to start radiation or chemo, since I know that is not standard protocol anywhere we dealt with, I'm sure things change and maybe that's why it's different. I was very interested to read your post and I was mainly wondering what type of tumor your daughter had. If it's too personal to share, I understand.