On Sunday Sue slept the whole day. It was the one year mark, give or take a week. It was last year that during a family vacation to Charleston, SC that Sue started feeling very weak. We did not know then that it was anemia and that the anemia was caused by Acute Lymphocytic Leukemia. Finding out would take two weeks and a rush down to the emergency room. It has been a long and rocky road and quite a "life interrupted." There are days and even weeks that Sue does not remember of the treatment when she was out of it. From the first diagnosis at GW Hospital, to the two rounds of chemotherapy at Hopkins last fall with the renal failure, to the months of nausea, numbness in feet and general weakness, very few people go through this much. And then there was the drama of finding of the bone marrow donor and then worry of whether it would take/engraft.
I wish I could say that it is all over, but there is at least five years till a cure can be declared and a year till getting inoculated against all the diseases that infants are vaccinated for. And now Sue is getting treated for GVHD (a little GVHD is good, because of its anti-leukemic effect, but a lot can be seriously dangerous). The treatment includes high-level steroid for a few weeks (no one laughed at the batting average jokes I made). In addition to that, Sue is participating in a study of additional drugs that may help the GVHD from reoccurring when the steroids are stopped.
The steroids should help eliminate the rash and will likely increase Sue's appetite (she has not eaten much in weeks) and activity. Unfortunately, it increases the chance for infection so we will be extra careful.
Today Sue is getting lots of IV medication including potassium, potassium phosphates, red blood and hydration. So we are stuck at the hospital for around nine hours today. And tomorrow will be a long day, due to the "60 days past transplant" testing which includes a bone marrow biopsy.
I know that Sue feels very grateful to all of the help from her parents, brothers and their families, my parents and family, other family, co-workers, friends and the numerous health care workers spending long hours to keep Sue well. And I thank all of you too. We hope that next year will be much easier for us and everyone else too.