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Ohh... the gall! )-:


Hi everyone,

I wrote this sort of panicked update on Wed eve to my family. First two paragraphs is that, then follows an update.

Wed eve: We had an eye Dr. checkup today in town here, at the recommendation of our Retina doc in MKE to check Travis' glasses prescription. Well, for some reason, Travis' right eye, which used to be better than his left eye, is significantly different (worse) than what the retina doc recorded last week. So, to find out what is going on (and this doc says hopefully it was just a mis-recording of numbers or something on the sheet she got from MKE last week), we're heading up to MKE tomorrow for the retina doc again (and that was going to be our first Thursday without a doc appointment at all -- ironic). Anyway, she's saying there's likely no problem, but urged us to get him checked there right away because now that Travis is only on Foscarnet 1x a day, we don't want the CMV back. And then to top it off, tonight as I took Travis' glasses off at bedtime, he looked at me and laughed and said "Mom, why do you have two heads?" He wasn't kidding, his eye was crossing a bit (hasn't done that for a long time) and he really was seeing double. Has never said that before. Am trying not to panic. Maybe he's just tired (it was late when he got to bed). Anyway we head up tomorrow for an 11 am appt. tomorrow we were to stop Prednisone (steroids) but Travis has had belly pains 3x today and a few times over the last 3 days, so I don't think they'll stop em. Will check at the clinic tomorrow. And lastly, tonight he was complaining of pains in his right side toward his back. You can't imagine how every ache and pain he has is scary. I try to fight off the feeling "is this relapse or what?". Have to run, but wanted you to know the latest. Will send more after tomorrow and / or when we know anything (like hopefully no problems, but some plausible explanation).

Friday am:

Sure enough, it is not "nothing", but rather, the side pains Travis was experiencing has worsened. So he was admitted last night after a day of clinic and tests and we're back at Children's Hospital of Wisconsin in MKE.

After abdominal X-rays and ultrasounds (including being in a room next to a drugged out gunshot victim with a police escort!!! Yipes!) it seems to be a problem with Travis' gall bladder. We're not sure exactly yet, but they think likely it's a small gall stone that doesn't appear on the scans and has caused an infection. Or they think the GVHD has just moved to a new place in his body. Not sure yet. Travis had a fever of 38.5 this morning, so something is surely going on. The pain has been unbearable for him, so he's back on regular doses of morphine to relieve him. So he's sleeping alot and eating nothing. Back on fluids full time, too. We're going for a gall bladder scan in a few minutes so this will be rather brief.

Strange, the reason we came up here primarily was for the eye concerns. Turns out that was unrelated to cancer / bone marrow transplant / GVHD, but rather, his far-sightedness has gotten worse, and more amblyopia, so he's going to need stronger glasses. Amazing -- a "regular kid" problem in the midst of all this. In the scheme of things it is now minor, while we deal with the galling gall bladder issue.

So, we're back in the one parent with one child 24 hour shift routine already. At the Ronald McDonald House (which Spencer feels is completely thrilling -- like a resort away from home) and the hospital. Will write more when we know more. Am taking Travis off for scans...

Love,

Melanie, Joe, Travis and Spencer

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