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May 05-11

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Alright, I know it's been ages since I have posted, but things have been going okay for Tim.  We reached a plateau and have just been hanging out there.  Prior to his march hospital stay, he had been making platelets.  Well, that all stopped after his systemic blood infection.  He was getting weekly infusions of RBC's, platelets, IVIG and shots of Neupogen (boost white blood cell production) and N-plate (boost platelet production).  He also had a couple of infusions of daratumumab (stimulate the production of red blood cells).  It's been a long summer with more visits to the doctor and infusion center then I can count.  Well, it looks like a couple of the drugs are doing what they are supposed to.  In the last couple of weeks his WBC and platelet counts have both gone up.  However, those pesky RBC's still haven't come out of hibernation. He also has some pretty serious GVHD in his mouth and eyes. He's definitely getting stronger and participating more in life which is awesome, but still faces daily challenges.  We have our 1-year post-transplant visit with out Nashville transplant team next week (Aug 25-26).  That means, lots of blood draws, another bone marrow biopsy, pulmonary and cardiac function tests, meetings with the transplant team and a visit to Nashville's ophthalmologist (out local one is clueless about GVHD of the eyes).  It's going to be a busy couple of days. 

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