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Apr 28-May 04

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I'm actually writing one of these myself for once, 'cause I actually remembered and had the time at the same time. When We got home from Indy last month we made an appoint with, and I saw, my oncologist. As it turned out, my oncologist that specialized in post transplant EBV related cancers specialized in EBV related lymphomas, so he felt I would get better care from someone who specialized in sarcomas. When I saw oncologist #2 she ordered more tests to present to the hospital's liver board ASAP. The follow-up was scheduled for yesterday, but I came down with a fever suddenly in the small hours of the morning, and she instead went over the her and the board's recommendation over the phone. Before I dish out the real reason for posting I should add that at Mom's Hepatology appointment her doctor said he's a member of the board and that we don't seem to realize how serious this is, because there's only been 6 prior cases of this cancer by the NIH, and we need to find someone who's actually seen it before, even if it means leaving Texas again. He said we need as much help as we can get, because my body's been through so much, and am I up to the fight? Mom said he clearly hasn't met me, because I only seem relaxed because I'm so confident about being up for it. Getting to the point of this post, part of the reason why I'm so confident is because Ive been through the doctors' plan before. My profile picture above is when I got to ring the bell at the end of my previous course of radiation therapy. The board's recommended that I undergo another round of external beam radiation therapy. Even the rare and high mortality infection caused by the last course being the wrong treatment I still came out on top. I'll die when I'm good and g** d*** ready, and not until then, and that won't be until I can be certain I've saved enough children from my fight to make up for everything I've gotten.

-PJ

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