The first one is to help out five-year-old Frankie Flora of Wappingers, attacked by a pit bull back in April and now recovering from some heartbreaking injuries. It's going to take him one heck of a long time to come back.
That's www.frankiefund.com.
The second one is in memory of a brave and dedicated radio colleague of mine, Jen Coudrey - who died last week after seven years battling a rare form of cancer.
www.jenfund.org is where you want to go. I only worked with Jen for three years, and hadn't seen her in ages - but on any given day, even in her suffering, she continued to be one of those rare souls who spurred the people around them to try to live their lives in the best possible way.
And finally there's continued great work being done at Albany Medical Center, who saw my darling Noodle through more than two years of treatment for kidney disease (still in remission!). Here's their link, and you can check out the Vasculitis Foundation for more on Henoch-Schönlein purpura, the condition that triggered her kidney disease.
This concludes the earnest and serious segment of our blogging day.
Showing posts with label Vasculitis Foundation. Show all posts
Showing posts with label Vasculitis Foundation. Show all posts
Thursday, June 4, 2009
Sunday, November 2, 2008
OFF TO ALBANY TOMORROW
We are hoping that maybe this will be our last trip up to Albany Med for quite some time, seeing as Noodle's Henoch-Schönlein purpura appears to have been in remission for a good six to nine months now. We haven't seen any fresh weirdness in quite some time, but there are still questions we need to ask of her nephrologist.
You can find out more about HSP and related diseases at the Vasculitis Foundation.
You can find out more about HSP and related diseases at the Vasculitis Foundation.
Thursday, September 11, 2008
HER REMISSION, YOUR MISSION
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, everybody...it 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 www.mygooddeed.org, which can point you to local charities who could always use a spot of help.
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, everybody...it 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 www.mygooddeed.org, which can point you to local charities who could always use a spot of help.
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