Ceeee, to reinforce what Neil said, they told us here, at Stanford Medical Center, "it's the squeaky--that gets the attention". Our son was here for an entirely different problem several years ago, and it was true then, as it is now. Don't be afraid to ask questions, and keep asking until you are satisfied that you understand the answer.
Best wishes with your young son, and keep "in there", fighting for him! Keep asking questions until you get answers that satisfy you! We have to stand up and be heard!
Pat
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Pat, wife of Ron, age 66, dx with RCMD, 12/09. Procrit, Neupogen, 18 rounds of Vidaza. Planned non-myeloblative BMT May 15, 2011.
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