Aaron's Hyper IgM Journey

Friday, September 20, 2013

GVHD lingers on

We left Monday morning for another trip to Cincinnati for Aaron's photophoresis. Such anxiety filled my heart as we got closer and closer. Being home is a bit of an escape from the reality that Aaron suffers from a deadly and difficult to treat complication of his transplant. Driving to Cincinnati is a reminder of this fact. And sadly, Aaron's gvh has flared to cover most of his body since we were here four weeks ago. He is also having watery diarrhea, a very bad sign.

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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1 comment:

  1. Chandelle,

    I am so sorry to hear this. I just read about Crowdfunding. This is a type of crowd sourcing to fund just about anything. I'd be happy to set this up for you. People can contribute any amount of money and it can be ongoing as there are several different types. I'll ask my accountant about other options like becoming a non-profit foundation or some other entity that allows you to receive donations tax free. And I'll do some other research as I think there are grants or at least a foundation that offers relief for long term care like this...somebody just mentioned this and I don't know why I didn't think of it sooner!

    You are all in my prayers...