The doctor told us to plan to stay longer than usual. She was planning to admit him after seeing the pictures of his skin. She met with us first thing Wednesday morning. She was not pleased with his progress since the last visit and decided to add influximab. This is a drug we stopped several months ago because the insurance company refuses to pay for it. Each dose is several thousand dollars and they say there is no evidence it works in gvhd. They need to send a representative to the hospital because Aaron made huge improvements overnight after receiving this infusion. We did a second dose today. Aaron is improving enough that the doctor is increasing his steroid and sending us home.
I am overjoyed that we avoided a hospital admission, but I wish Aaron was doing better. This setback means our trips to Cincinnati will be continuing for quite some time longer (probably a year or two) and we have no hopes of an immune system anytime soon.
If anyone can think of some good fundraising ideas or knows of any companies that donate to charities for tax breaks, please let me know. Each trip to Cincinnati costs $800 in gas, hotels, and copays.
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