Wednesday, October 12, 2011: Day #49

Wednesdays are our big day with bloodwork, 4 hour light therapy ECP treatment, clinic visit with Ron's primary bone marrow transplant doctor, and a stop at the pharmacy (located inside the hospital). We left the apartment at 6:30, and returned about 4:00. Then Ron still had his at home IVs to do which take a total of about 6 hours. The BK viral infection which is primarily symptomatic in the bladder is causing the most havoc now. The doc added another medication to help settle the discomfort. He also told us that Ron is doing well enough at home to not readmit for hospitalization at this time. That is one of our goals, but we had packed for the hospital on the last 2 Wednesday appointments.
Ron's skin continues to show improvement (red rash areas turn brown as they heal--covered 70% of his body), so the doctor tapered his steroid dosage again. He has to do this gradually to avoid another GVHD skin-gut flare-up, but the steroids continue to weaken his muscles. We are in the midst of a challenging and difficult period of recovery. Ron's next appointment is Friday afternoon when he will receive his second cidofovir infusion at the Cancer Center Infusion Room. This treatment is fighting his viruses and takes about 3 hours. Today when we were waiting to see the doc, I was again reminded of things the U of M does to help the patients cope. A woman was giving patients "cancer warrior" t-shirts, a guitarist was playing soothing music, and a hospitality cart passed with gifts for patients (snacks, magazines, polartec throws, etc.)
We know you are out there thinking of us and supporting us in many ways. It is so appreciated.
Ron & Jan