Doctor Day: Wednesday, January, 18, 2012

Wednesday continues to be our regular appointment day at the Bone Marrow Transplant Clinic on 7th floor of the new Mott's Children's and Women's Hospital. Next Wednesday is Ron's last ECP light therapy that was scheduled as a part of the study in which he is a participant. He could possibly have additional treatments scheduled if needed to treat his skin. The treatments work by drawing out blood through his port, spinning it to separate white blood cells which are treated with a drug and then ultra violet light before returning it to the bloodstream. The drawing out of blood and collecting the white blood cells while returning the other part of the blood back through another lumen takes about 2 hours.

His port has 3 lumens, so when I give him his 2 IVs at home, they can be done at the same time through two of the lumens. Ron will have the port removed some time in February and transition to oral meds for the ones he receives intravenously. For several weeks now, we have not had a nurse come to the apartment. Nurse Jan has learned to take care of Ron's medical needs and has new appreciation for caregivers everywhere who do the same and much, much more for a loved one.

Today his steroids dose was lowered again. Yeah!! He uses either his walker or cane for walking but relies on the walker when outside the apartment. Today's appointment also involved talking about the tests he will have in February before we move home, including another bone marrow biopsy, GVHD evaluation, and lung function test. Everything feels positive at this point.