Monday, August 08, 2005

Nothing--that's all I know

Nothing definitive to report. Lots of tests completed, all still pending results. There is no express lane to get quick results on lab cultures. Those darn bacteria, viruses and fungi will only grow at there own rate. And we wait. Poor kid sure could use a central line this time. He’s been poked multiple times daily for blood samples his IV lines keep failing. They’ve had to start five new lines in the eleven days he’s been in. He’s been very good about it

What we do know is that except for the positive on the parvovirus, everything has come back negative so far. They’re optimistic about the spinal. Although it will still take several days to get all the results back on viral, bacterial or fungal meningitis; the fluid was clear and didn’t show any white cell increase which would be evident if it was fighting something off there, so they are optimistic (huge sigh).

The sinus infection has mostly cleared up, but the headaches have not. And they are not responding to normal pain meds, i.e., ibuprofen and/or Tylenol. So he’s still getting Dilaudid via IV. The headaches still hit once or twice a day, but they haven’t been quite as severe. The bottom line is, they just don’t know what is causing the headaches although the parvovirus or graft versus host could both be a factor there.

They are mainly leaning towards this being graft versus host disease, primarily because the liver enzymes have stabilized and begun to gradually decrease since he started back on Tacro for immune suppression. They/we are waiting for the HLA typing to come back to see if it’s his or the donor DNA. If it’s still the donors, then all is good and we’ll continue to treat the graft versus host. If it’s his DNA, then it’s likely the cancer is back and we’ll have to do a bone marrow aspiration to verify. We’ll only address those options if it becomes necessary. I certainly don’t want to think about it.

If it’s graft versus host, then we’ll keep him on the Tacro until it stabilizes and then start to taper him off again. Hopefully it won’t require steroids, but they’ll be brought into play if the Tacro isn’t effective by itself. We don’t know yet how this is going to affect school. We hope he’ll be able to start on time. The doctors will have to access it and it will be their call since he’s back on immune suppressants. He’s still got two weeks before we get started, but right now he wouldn’t be up to it. He sure needs it, though; physically, mentally, and psychologically. It would be a huge boost for him.

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