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Dear everyone,
Well, today's news wasn't particularly fun. Travis' doctors now believe strongly that the belly cramping Travis is experiencing is due to Graft - versus - Host Disease (GVHD), one of the many possible after-effects of a bone marrow transplant. They are hopeful that with the mega - steroids he is now back on, it will arrest the pain and diarrhea. Then, in that horribly inconclusive language, the doctor says, "Then we wait to see if the marrow and Travis' body can get along." Man, I just wish someone knew anything for sure about this stuff -- and we're with one of the world's best doctors. There are just so many unknowns.
The third strike was this evening, as (thank God, Dr. Casper recommended that Travis be checked out by an Opthamologist) it turns out that Travis has CMV Retinitis (viral infection in his eyes). DAMN. Four eye specialists came in and confirmed the findings. They say that this virus is particularly tricky responding to treatment. And when it does, the incidence of recurrence is high in those with weakened immune systems. Untreated, it can "severely compromise eyesight". Fortunately, now they have detected the problem and they can begin aggressive treatment. Strangely, Travis' CMV test yesterday showed no activity. We really feel like Dr. Casper is clairvoyant -- even with that report, he said he wanted Travis' eyes checked. Anyway, Travis is already on a very strong IV med nightly, Foscarnet (the one that beats up the kidneys), to fight CMV. The team has decided to bump up the foscarnet dose as the first choice of treatment. If this doesn't do it, they may have other meds options, or decide to introduce medicine directly to the eye -- surgery. Not to this point yet and hopefully won't need to be. Apparently, Travis' eyesight is still ok, 20/25 with his glasses, but they did see evidence of blood vessel damage around the edges of his retinas. This damage is supposedly permanent, but they feel encouraged, since it hasn't affected his eyesight yet and maybe they can arrest it from here. We pray so. I'm not going to go off the deep end on this until we learn more, but clearly, this is nothing to mess around with. Travis goes to the eye clinic in the am for pictures and further exams. (I originally was writing this as the specialists came in, and just now revised it. Otherwise I would have led off with this news - not fun).
The Hemotologist was also in today. Travis' hemoglobin has been pretty low for the last month or so, and yesterday and today dipped to 7.0 and 6.8 respectively. The doctors aren't too worried about this at the moment ("it's the least of our worries right now" they said), as tests show that his marrow IS making red blood cells, and quite a few (normally 1%, Travis is at 4.4%). That leads them to believe that Travis' body can bring his own hgb level up without a transfusion. They'll be watching this each day. Fortunately, Travis has had decent energy and no headaches or anything, so they haven't had to transfuse yet.
He is still experiencing painful cramping (although less often), and they are treating it with morphine, which takes the pain right away (!). (Don't know if I wrote this, but in December, when we were in the hospital, someone administered Morphine to Travis instead of Dilaudid. We had suspected that Travis was allergic to Morphine, and went ballistic when we heard that he'd been given it in the wee hours of the morning. Fortunately, it turned out that Travis had no allergic reactions, so we were able to rule out Morphine from the allergy list. So he does get it now with no problems.
Spencer is completely enjoying the Ronald McDonald House, and was welcomed back to his local Jr. Kindergarten class with squeals and delight from the kids and his wonderful teacher. Joe said it was like a rock star had entered the room -- the kids were beside themselves with excitement, all yelling "Spencer, Spencer!!!" Naturally, he was overwhelmed -- but extremely flattered.
Joe and I are worried and tired, but are just trying to gather information and keep our wits about us. The RMH volunteers and staff greeted us like family, which was very sweet. Sadly, there are several other families who are back here at the HOT Unit too. Don't know what's up with them yet.
We'll keep you posted on what all this latest info means as we learn more.
Love,
Melanie, Joe, Travis and Spencer