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Cindy,
I really admire your determination. I'm really sorry to hear about Ron getting bumped from the trial. I can understand why doctors don't want to keep patients in a trial if they think the risks might outweigh the benefits, but of course they are making educated guesses about Ron's prognosis without knowing for certain.
Phase I trials are more of a long-shot than later phases, because they are designed to test what a drug does but not how it compares with non-treatment or what the most effective dose is. It would be much better if he got into a Phase II or III trial for a treatment that's more likely to do some good.
You may have to settle for transfusion support without other treatments, and just deal with symptoms as they come up, while you watch for another trial opportunity. I wish you had better choices.
About falling: urinating can cause an instant drop in blood pressure, leading to lightheadedness and danger of a fall. It's better to sit than stand.
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