Check-ups at University of Michigan

We traveled to Ann Arbor Tuesday and Wednesday. On Tuesday Ron's appointment was with his neurologist--6months since last evaluation. At that time he told us that Ron could continue to improve for 2-3 years. His body took a beating from 7 rounds of chemo, the transplant, and all of the medications required for his complications. He has made good progress in 6 months. His tremors are gone; almost all of the numbness in lower legs and feet is gone. He can write well again and walks with a cane. He continues to have minimal balance issues. His persona has returned, and he can do complex mental tasks again.
Looking back there was a period of time in the spring when he could not write, could barely walk with a walker and needed to have someone with him helping support with a belt. He could not use a remote control for the TV because of the mental processing required and did not have finger strength to push the keys. He could not text, make phone calls, carry on a conversation, or even change position in bed. He also lost about 40% of his hearing and the vision in his left eye. Those were the days that I felt like I was in a dark place. Because it was.
So that puts things in perspective! When Ron met with his transplant doc on Wednesday, it was decided that Ron needs additional treatment for his chronic graft versus host disease which affects his skin and lungs. He will start Photopheresis light therapy (ECP)on Monday and Tuesday. This is the same treatment he had for six weeks after his transplant as part of a study he agreed to be a part of. This treatment will be given at Mott Hospital on the floor directly above the BMT Clinic. He is connected to a machine by two IVs. It draws blood, spins it in a centrifuge, separating the white blood cells which are treated with a drug and ultra violet light, and returned to Ron. This inhibits the new bone marrow from attacking his skin and lungs. Because it is not an immunosuppressive method, the goal is for Ron to not have as many infections, and his skin and lungs should improve function.
He will have more frequent treatments, weekly, to begin, tapering to monthly treatments after a few months. Ron's new marrow is working hard but is over-aggressive. Patients who have GVHD have less occurrence of relapse. The GVHD is believed to also attack any remaining leukemia cells: graft vs leukemia effect. The transplant achieved the goal of keeping him in remission from what the doc calls "a nasty leukemia". It is a balance. In Ron's case the GVHD has caused red blotchy skin especially on his arms and also affects his bronchial tubes. Because his lungs aren't as effective, he is susceptible to lung infection and has a chronic cough. Hopefully, light therapy will ease these symptoms.