Aaron's Hyper IgM Journey

Friday, October 5, 2012

Aaron is active, mom and dad are frustrated

Aaron is starting to run a lot again. He is nowhere near as fast as before transplant, but he is gaining speed and stamina more and more. His new love is riding his trike up and down the halls of the third floor at RMH. He is starting to do no-hands (a trick he learned from his Caliou book). He screams with excitement. We have already gotten complaints from the family below us because Aaron wakes up at 7am and the first thing he does is turn on his cat piano and dance.

We couldn't be more thrilled with Aaron's excitement for life and increased energy. HOWEVER, we are discouraged. Again, the doctor tried to lower Aaron's steroid and now his diarrhea and skin problems are coming back. He will not end up like before since we are in Cincy and they keep a close eye on him. However, the steroids are breaking down his bones, stunting his growth, shutting down his pituitary gland, and many other bad side effects. He has to get off the steroids.

There is a treatment called photophoresis that is a possibility. It usually works very well with gvhd with very few side effects. This procedure is easy for adults but tricky for children. The doctors here reserve it for really bad gvhd. Other institutions have found that this treatment can be successful even using in cases like Aaron. We do not want to wait until his skin falls off, his gut is destroyed, or his joints are irreversible stiffened (all lasting effects of chronic gvhd). The longer the doctors wait the more lasting effects from gvhd Aaron will have.

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