Thursday, September 11, 2008


Great news for Noodle: her Henoch-Schonlein purpura is finally officially in remission after two and a half years of treatments and medication, and her kidney function is back to normal, and we can take her off the blood-pressure medicine.

Her whothewhat? is in remission?

Don't worry; it's what we said too after the doctors told us that she didn't have leukemia, but she did have this disease that, to the eye, presents almost exactly like leukemia, but is so obscure it needs a name in German and Latin. It ain't fun. To oversimplify, your kid gets a cold, and then a week or so after it's over their immune system for unknown reasons is still looking for something to do, like it's got a case of the Reggie Hammonds: Let's see...what we can (mess) with next. And goes after the small blood vessels in the knees, ankles, elbows, intestines...and kidneys. It gets ugly on the inside and the outside (warning: graphic).

Flashback to spring '06. Most cases of HSP go away on their own in four to six weeks. No sweat, said Noodle's doctors. The kidneys are only affected in one out of ten cases.

Her kidneys were affected.

Still, not to worry - the kidneys only fail in one out of a hundred cases.

Um, yeah. Great. Bartender? Double scotch, straight. And a hug.

Those abdominal pains could be intussusception. Better get her up here.

We're in the spelling bee from hell now, too. Intussusception is when the intestine tries to fold in on itself. Potentially fatal if things get jammed up and infected. And "up here" was the emergency room up at Albany Medical Center, the closest place equipped to deal with Noodle's situation. It's a super place on a Friday night. Only one gunshot wound that evening. In the end, it was just some nasty inflammation down there so we got to go back home.

But we got real familiar with Albany Med over the next couple of years. Kidney biopsy (CHRIST, THAT'S A HUGE NEEDLE), blood tests, urine tests, yummy barium-schmutz drinks, x-rays, weekends of infusion therapy with massive steroid doses, delightful hospital cuisine, and our little girl was a champ through the whole thing. We almost forget that she was just two when all this started, and now...fingers crossed, may just really, truly, be over and done with, maybe, we hope.

At any rate, if you're somebody like us who gets to 9/11 and gets the impression they should be doing something useful to the rest of society on the day but damned if they know what, you could do worse than to drop a little something in the bucket over at the Vasculitis Foundation, which does research on HSP and a passel of related diseases in the charming vasculitis family. If that doesn't strike your fancy, try, which can point you to local charities who could always use a spot of help.

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