Wednesday (doctor day). February 8, 2012

There is good news and bad news today. The skin symptoms and mouth symptoms do appear to be chronic GVHD (graft versus host disease) which is noted as cGVHD. For the future that means a continued regimen of medications to ward off any infections whether fungal, viral, or bacterial. It also means that he will continue to need immune suppressant meds to control the cGVHD. He will be seeing a doctor in the GVHD Clinic on February 28 who specializes in this complication. Ron is taking this all in stride and seems very accepting, but it was the first day that I felt like crying for a long time. I had wondered if that part of my emotional self had just dried up.

There is good news, and I wanted to end today's blog entry on that. That is my overall mental strategy: focus on what is good and positive. We are much closer to the conclusion of the 2 daily IVs that Ron has required since September when he was discharged from the hospital after the transplant. The anti-fungal IV was changed today to pill form and the other IV is half dose in pill form and the IV is halved. After his last ECP light therapy on the 22nd, his IVs should totally be in pill form, and he will no longer need the port. For whatever reason, I have always called it a port or neostar interchangeably, but today I learned that it is really called a line or neostar. (today's trivia)

We should still be on track to move home in early March. Ron's doctor day is Friday instead of Wednesday next week; he will have his six month bone marrow biopsy. His last one was painful, so he is going to have this 8th one done under sedation. I don't know if I have mentioned that after a year he will have to have all of his childhood immunizations again. We are looking ahead and feel like we are moving ahead although they could not lower his steroid dose again this week. The doc said everything will have to go very slowly now due to the cGVHD. We are doing okay.
Love, Ron & Jan