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Old Wed Nov 18, 2015, 09:56 AM
carrieridge carrieridge is offline
Join Date: Jul 2014
Location: Bellflower, Ca
Posts: 30

My hubby's story is such a crazy rollercoaster lol. He's feeling okay right now. We have dr appointment today. He was supposed to have an MRI a few weeks ago because of some stuff in his spine they saw on his CT. They did the CT as a pre-test for his upcoming DLI (which basically they are treating like a second allo). Needless to say, we did not do the MRI even though it was to be a sedated on (he's gotten so claustrophic over the years), so we ended up having a 3 week break from doctors appointments - which honestly I think he needed. Over the past 3 months, not only learning that he had graft failure, he got samonella poisoning, shingles on his eyelid and up his scalp, had a bone marrow biospy that showed his MDS went from RCMD to RAEB-1. We had "the talk" with his oncologist (he has 2 hemo's now, one for lymphoma (Dr. Pinter-Brown) and Dr. Paquette for his MDS, both at UCLA. We talked about quality of life versus longevity. My hubbys goal has been to see our oldest graduate (when he first got diagnosed with lymphoma, she was 6 years old), she's turning 16 on Dec 3rd. Dr. Pinter-Brown has always kept this in mind and so she did everything in her power to keep his lymphoma in check. He's relapsed so many times, been on numerous clinical trials, etc. So, back to our latest discussion with her, she said that quality of life and longevity are two totally different conversations and being honest she said that if our goal has changed and that quality of life was our new goal, then she would NOT recommend doing the DLI, because he WILL have gvhd, that will actually be part of the goal in doing it because he did lose his graft because of gvhd and the treatment for that. And she can't tell us how severe it will be or how much it will impact his quality of life. So, we did need time to stew on that one a bit. It's a hard discussion to have with your husband. We have three kids at home: Hannahs almost 16, Haylees 14 and Hunter is 11. I think those are three reasons my husband is willing to do all he can to stay around. I can't even imagine what he has to deal with emotionally when he thinks of not being around for his kids. Sorry this got so long, I really dont have anyone to talk to about this, it's hard to discuss things with his mom, because my husband doesn't want her stressing out. It feels pretty good even typing this.
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