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Back from Boston. My sons WBC and ANC count went up as hoped for with Neupogen. Yes, it is temporary as WBC last only 2-3 days but I think he will regulate back to his low normal. His platelets fell to 77, but his Hemoglobin stayed the same as last weeks at 9.5. Doctor seemed to think that my son was not on a therapeutic level of sirolimus long enough to give it a chance. The plan is to stay on cyclosporine and sirolimus for the next three months, then he wants to taper one of them off. He has not said which one. I spoke up and said I want a slower taper, not so fast, and he said he is doing what all the other hospitals do, the protocol. I mentioned that each patient is different and with my sons history of loosing the first transplant I feel it warrants a slower taper. For now I am glad the counts are holding, except the platelets fell, but we will see what next weeks labs will bring. Give me a stable Chimerism and a stable count, then I will give the Doctor the go ahead to taper his way, but for now, I am a worried, and very tired Mom....who will advocate for her son's best interest.
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