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Dear everyone,
Just a quick note between sneezes. Yes, we've been "sharing" in our home -- first Spencer caught a cold, then Joe, then Travis and now me. Mine seems to have totally whacked me out -- saved the best for last, I guess. We're just hoping that whatever I have, I don't pass back to the boys. It's back to MAJOR hand washing, with all my sneezing and dripping. This has been a relatively quiet 2 weeks. How wonderful to write that. Travis has had several checkups in Milwaukee, and now even occasionally only having labs drawn here in Chicago at Lutheran General Hospital. As of this past Monday, Travis' eyes seem to have improved, and the doctors seem encouraged by that. I held my breath with the eye test, hoping he could read each line as he had the week before, to demonstrate no vision loss. And sure enough, he did great.
Other than funky, low counts, all has been pretty good. The doctors were pretty convinced the low counts were due to the Foscarnet (high doses) and weaning steroids. Sure enough, now with reduced Foscarnet (hooray -- from 3x a day, one hour each, IV infusions down to once a day + overnight fluids IV), his counts seem to be creeping up as of today's labs. We also got the good news that a confirmation test showed Travis' marrow as 100% donor cells! (That's great news, as any of Travis' marrow cells could be carrying more cancer.) The only blip we've had was the first night of Passover, after Travis had had his four cups of grape juice, matzah and other traditional seder meal foods, he awoke in the middle of the night and had quite the "accident". (Thanks for the urinal tips, everyone, but that didn't help this particular problem -- bummer!) Suffice it to say, it was pretty disconcerting -- diarrhea, out of the blue, when he'd been feeling so well. So today was an unscheduled visit up to MKE again, but Travis checked out ok. They're guessing it was likely the juice and other new foods with perhaps some remaining GVHD. So we're back to the restricted diet again for awhile, and he's getting IV steroids for the next few days. Again, he feels great, and we are taking that as our daily barometer.
Joe and I saw a counselor and talked about our concerns with Spencer, and how difficult it must be for him to process all that has gone on. After listening to our story and examples of Spencer's reactions to some things, she recommended strongly that Spencer, as well as all of us, should definitely have the chance to work this out with a good psychotherapist. Interesting, she recommended that the boys each have their own child therapist, so they can speak whatever is on heir minds, knowing that they don't see the same person. So we're in the process of setting this up. For Joe and me too, to process all that we've been through. Actually, a friend had recommended that we do this right when Travis was diagnosed, but it was one of the things we just didn't have time (or take time) to coordinate in all that flurry of craziness. But even though this is so much later, I still think it will be a big help to all of us. Joe and I hesitated a bit before even writing this, but I think it's so important to share, that this is a healthy thing to do. We already learned a lot from this one woman about what might be going through Spencer's and Travis' minds right now, let alone our own So this will begin a new step in this journey.
The other highlight of our week was on the first night of Passover, when both Spencer and Travis sang the Four Questions in Hebrew (with some prompting) with full sweet voices. And then Travis insisted on reading parts of the Hagadah (the book used during the seder). It was so sweet, and again, so much more meaningful this year. Happy holidays to all of you. Thanks again for your love and support.
Love,
Melanie, Joe, Travis and Spencer