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[quote=Anonymous][quote=Anonymous]OP again. Things are now moving fast and furious: MIL has been diagnosed with an aggressive form of a myelodysplastic syndrome (MDS) and starts a course of chemo today. Then they’re talking about a bone marrow transplant in about six weeks. Clearly not the easy solution we were hoping for, but we are thankful for answers and a defined path forward.

DH will likely go out sooner than our original tickets, and I and the kids will follow as booked. After that, we’ll play it by ear. We are very grateful that DH’s brother lives in the same city as their mom, so she has immediate support.

If anyone in the DCUM Universe has experience with MDS, or would be willing to offer some general advice for supporting chemo patients (and/or supporting the people who are supporting the chemo patient), whether in-person or from a distance, I would be very grateful for suggestions, links, etc. Right now I’m just concentrating on holding space for my husband and doing what I can to free him up for where he’s needed.[/quote]

At this point, I think you or your DH should call in to important doctor appointments. I did this with my dad when he had prostate cancer. He was just overwhelmed. Too many new words, too much stress and anxiety. He would walk away from doctor appointments with no clue what was discussed. None of the doctors minded - he would just put me on speaker phone when the doctor was ready to discuss things. I stayed mostly quiet and just took notes, and then I'd go over it with my dad afterwards but slowly and looking up words we didn't know. We caught a few important details that way. Like one doctor called the more aggressive treatment one acronym but another doctor who discouraged the aggressive treatment called it something else.

Best of luck, OP. Some MDS is treatable, and there are lots of clinical trial options, too.[/quote]

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