Another day

Another day at U of M. Appointments went ok. Tyler's GVHD is of concern to the doctors. They are afraid it will get away from them and get into his organs and so forth. They increased his Tacro (anti-rejection) meds to 2.5 mg a day, new steroids Medrol,64mg a day, Flucmazole for fungal infections and another cream for his face. They also would like to start some treatments called ECP Photpheresis. This is where they would take your blood from one side of you, seperate T-cells (part of your white cells that fight infection, cancer etc) expose them to UVA light, and return them to his system. The result is suppose to stimulate the treated cells to attack cells causing disease. Like a vaccination. There is a lot more medical gargan that goes along with it and there are many sessions.Tacro limits the cells, kind of keeps them under control, Steroids kill off cells, thats why they're limiting amount, and this ECP trains cells (basically).
It's all well and fine, but Tyler so strong and so in control, had a breakdown after we left. He would not be happy if he knew I said anything,but I told him it was good to get it out. It's so frustrating for him! He just would like a chance to be a normal kid! Even if he is 19 now, he hasn't had a chance to be just a kid since 10th grade! I am helpless, I can't "make it all better" isn't that what mom's do?! I have always tried to help my kids work thru any problems they had, and I guess that's all I can do! Be there for him. It's just so unfair how these kids have to go through this!

Thanks for listening
Prayers appreciated
Throw in few extras for those fighting this awful disease

Kelly