We just got back from another three days in Cincinnati. Aaron has been doing so well with his steroid wean until now. GVHD is spreading over most of his body. He is also having signs of gut GVHD. We had to go back up on steroids again. Even with the increased steroid, his skin is getting worse. The doctor also said that Aaron will have to keep coming every three weeks (we were suppose to start going every four weeks now).
I really don't know what will happen now. The doctor will have to come up with a new plan. They say GVHD will burn out in five years in most people. I was hoping we wouldn't have to wait that long. Until Aaron can get passed GVHD, he cannot get his new immune system. I am trying to stay positive, but it is really hard.
One day during his photophoresis, Aaron asked me to order him a cupcake and then he fell asleep. I completely forgot to order the cupcake. When he woke up it was time to leave the hospital. I felt bad. We had to leave our room since they needed it for the next patient. However, I ordered the cupcake and we waited near the clinic until it came. The doctor kept teasing Aaron that he was going to eat his cupcake. Aaron was mad!!! He yelled at the doctor, "don't eat my cupcake." When someone says hi to him, he usually yells, "don't say hi to me." However, the rest of that day when someone said hi, he yelled "don't eat my cupcake!"