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Dear Everyone,
Sorry for the belated update. This has been a week of major ups (regarding Travis) and downs (regarding a sweet friend of ours), so it took awhile for me to get ready to write.
Happily, I can report on Travis' wonderful checkup last week. Bottom line is that Travis' counts are the best ever since transplant. WBC 7.1, Hemoglobin 12.0, Platelets 135, Creatinine .6. And his eyes once again checked out great -- with no evidence of renewed CMV activity. I can't begin to tell you how relieved we felt at this report. For the two days prior to Travis' visit to the clinic, I'd been noticing little things about Travis (a bit of skin GVHD activity, comments about being too tired to manage a full day of school, complaints of eye pain one night etc.) and was trying hard not to make them into a big deal. It felt like I was holding my breath until we got the good word -- that all is going unbelievably well. We know how blessed we are. We really do.
Two other friends -- from our BMT Talk Listserve -- passed away past month. Both had received BMT's. Both bright, energetic, intelligent adults, with positive attitudes, with the "right spirit" to get through this -- both still lost to cancer (and one also to CMV complications). This sucks, folks. On a happier note, again, yesterday we got an update from another of our hospital and RMH neighbors that little Sydney is doing great after her BMT (on Travis' birthday last year!). That was a tremendous boost to read. So the news is up and down, up and down. I guess we just have to cling to those ups and never take for granted how lucky we are.
As always, there are incredible moments of sweetness that remind us of some of the "good" that has come of this journey. The other night, Spencer left the dinner table with a belly ache and went to rest in his bed. As I went to cuddle with him, he asked instead for private time with Travis. Curious, I stood in the hallway to listen. I remember being so touched, I just slid down the wall and crouched on the floor -- so awed and touched at this event. Travis said, "It will be ok, Spencer. Now just let me ask you a few questions to find out what we should do." And he proceeded to say things like "Now, when did you first notice the pain? If 10 was the worst and 1 was the best, how would you describe the pain? (It was a "5".) Is there anything else hurting you? How 'bout your ears? Do you have an earache? Headache?" And with Travis' slow, patient assessment, Spencer relaxed and answered each one thoughtfully, and apparently came to the conclusion that he didn't feel so bad after all. They were snuggled on the bottom bed of their shared bunk, whispering quietly and seriously for about 10 minutes. Spencer was totally at ease with his big brother. It was complete trust and comfort. And after awhile, as the ache was proclaimed a "1", it was back to two boys racing around and playing Pokemon, as usual. I can't even begin to interpret what all this was about. I just had to write about it, so we don't forget. It was sweet, pure and touching. I know both boys have underlying feelings and unresolved fears about all this (and they don't know about Teddy's latest news). It comes out in unexpected ways, at unexpected times.
So here at home, anyway, things are truly going well. To see these boys and observe their lives, one wouldn't have any idea of what's gone on during the last year and a half. School, friends, playing with wild abandon, homework, giggles, challenges it's just "kids life" -- mostly. Next checkup is in December. In the meantime, we'll think positive, count our blessings and send love and prayers to our friends who have lost or are losing this battle as we read this.
Thanks for the love and caring. It makes a huge difference. And Marge, thank you! We think of you all the time!
Love,
Melanie, Joe, Travis and Spencer
P.S. Thanks everyone, for the support for my Dad. He's a model patient (must be the doctor in him) -- doing great, recovering slowly but surely. Yippee! Go Dad, go.