Darice,
I'm glad Jens' counts are staying OK. Sometimes you have to take what you can get and run with it. You can't avoid the thought that MDS is hanging over you, but do what you like to do and enjoy yourselves.
You mention new-fangled treatments, so one thing you can do is to search for clinical trials, either on your own at
ClinicalTrials.gov or by asking the doctors or someone else at the treatment center about what trials might be available. Each trial accepts only patients who meet their specific criteria (age, disease type/subtype, health condition, past treatments, etc.) and you might not find one that sounds worth a try, but you won't know unless you look or ask.
You can watch a presentation about Clinical Trials using a link on the AA&MDSIF's
Clinical Trials page.