long clinic

If there is a big storm, guarantee we have clinic. Ever since she was diagnosed 4 years ago, everytime it is either raining or snowing. Sardine Canyon was so bad, at one point we couldn't see the hood of our car. It was learry scary, as Elsie would put it. Luckily it was the family meeting day so Jake drove with me.
The drive took a long time, clinic took along time with audiology, xray, clinic, more xray's, clinic again, and our meeting with her bone marrow doctor. The yearly meeting went good. He said that since she has made it to a year past transplant, and since she was on sirolumous ( a drug being tested which we were lucky to be picked, and is given before marrow transplants) her chance for relapse is 10% and it goes down to 2% by year 5. Those statistics are from the other patients who were given that same drug. She still has chronic GVHD so we are still in the bone marrow team and not turned over to oncology team, which it may be a while. They are slowly tappering but chronic GVHD is hard to kick and it flares up when you tapper. Chronic GVHD never stays after 5 years and basically gives up. We don't want it to last that long, we hope it gives up earlier and she can return back to school in the fall. The doc wants to set that goal, but you never know. Then we drove our long drive home in white out conditions, going pretty slow. It was a long day.