We have been back in Cincy for a month now. Aaron was inpatient for two weeks and then outpatient for two weeks. His doctor tried to do another steroid wean which lead to worsening of his GVHD again. He is having diarrhea, his skin is flaring with rashes, nails are brittle and peeling off, and his tongue is covered in lesions. This led to him being hospitalized again last week. They are trying a new medication that should help called infliximab. However, studies show this medication only helps temporarily and is not a long term solution. Cincinnati is still hesitating on photophoresis. I have come to the conclusion that they have too many patients going through BMT and not enough means to give them all photophoresis. They have to reserve it for the critically ill.
We have researched ECP (photophoresis) extensively. (Glad to know that the research skills I gained during my Master's degree and Doctorate degree have finally paid off). I have even been in contact with the VP of clinical trials for Therakos, the company who makes the ECP machine. Aaron WILL have this treatment. The proof is in the science and the studies. We have contacted Boston Children's and Lurie hospital in Chicago. Both think Aaron is a great candidate for ECP. The head of the BMT department at Lurie personally called my husband twice so far and has set up an appointment for him for October 22nd. We will likely use this facility for his treatment. Lurie was one of the first in the US to do ECP on children, especially little children like Aaron.
Chicago told us to give them a 12 week committment. No problem there! What is 12 more weeks. Looks like we may be spending the holidays in Chicago. This works out well anyway. Michael is a pilot and based in Chicago. I think a change of pace will be good for all of us and give us a renewed strength and hope.
I told my husband... We picked the best place for Aaron to have his transplant, now we have to pick the best place to deal with his GVHD.
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I had goosebumps as I read this. I love your determination and strengh. We don't get to choose our paths, our parents or our children, but you three are an amazing unit that could not have been better put together. Aaron is so lucky to have you to fight for him and we look forward to the day where you look back and say, remember that day? I wish you the best of luck in Chicago. We will continue to carry each of you in our hearts and prayers. Xoxox Deb
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