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May 09, 2011

Her Gift of Flare

CHICAGO – I'm at Children’s Memorial Hospital, waiting on a diagnosis.

Thing-1-two-weeks-preflareIf that sends a sinking feeling through your chest, know that it has done the same to me a few hundred times the past two weeks. That's when our daughter, Thing 1, began showing all the signs of a full-blown relapse of juvenile dermatomyositis.

 "Flare" is the more proper term. That's what the doctors call it when the disease, a barely smoldering ember in her body for several years, bursts back into visible flames.

The butterfly-shaped rash, cheek to cheek across her face.

The blotchy redness on her elbows and knuckles.

I can't tell you what's going on in the blood and muscles and immune system of that gangly 11-year-old body of hers. That's why we're halfway across the United States meeting with her specialist today.

Blood draws. Close-up photos of the microscopic capillaries of her fingernail beds. Strength and flexibility tests to see if the re-emergent disease has sapped her muscles. Maybe a few X-rays for good measure.

Thing 1 May 5 flare Despite her beet face and speckled arms, Thing 1 says she has no pain and only sporadic weakness and tiredness. She did break into tears at soccer practice on Thursday when I made her, along with her teammates, run a third lap for their failure to completely finish running either of the first two.

"I was running, but I got tired, Daddy. You know why!" she sobbed as I pulled her aside before the drills started.

She couldn't tell me that 9 years ago.

My little girl, age 2, puffy and swollen, covered in these crimson splatters. She'd come home from daycare and fall over asleep on the couch, no thought of eating dinner or even a meek plea for a "Blue's Clues" video. Later, she'd struggle to stand then ask me to carry her because her legs couldn't support the weight of her body. She just didn't have the vocabulary to tell me then.

"What have you been telling the kids at school when they ask why your face is all red?" I asked her one night last week.

"I just tell them I'm hot," she said. "Red hot."

Why children have juvenile dermatomyositis, one of the variations of the juvenile myositis (JM) autoimmune diseases, remains a mystery. Defective genes and out-of-whack chromosomes are suspects. Their flawed designs become evident when a child's immune system kicks into a perpetual overdrive, triggered by at sunburn or maybe an environmental pollutant.

We don't know what kick started the disease in Thing 1 nine years ago; we have a good idea of the culprit this time: the alleged urinary tract infection that kept her from this year's Opening Day in early April. Alleged, I say, because her urine culture can back negative despite all the obvious painful, burning and feverish symptoms.

"It must be some kind of virus," our pediatrician told us. I've learned, as a parent not just a JM parent, that first lesson taught in U.S. med schools is "don't say that you don't know -- just blame an undetectable virus!"

I don't want to sound bitter or anger. I am not. Flares tend to be a normal occurrence in JM kids.

I am disappointed.

I am tired.

I am worried we are back to Square One.

I haven't been letting my wife, My Love, know just how worried. She has enough of a burden to bear supporting our family, putting up with me and fighting feeling of guilt over her daughter's sickness. I may be the cynic when it comes to the world, but I'm the court jester in our little Uncool family who tries to keep everyone on the upbeat even when my sarcastic tongue may say otherwise. I am the optimist when it comes to my daughter's health.

Today, eff it all.

Nearly nine years of pills and shots and IVs and there we were, down to a small handful of meds. No muscle issues for, jeez, six or seven years. Skin nearly pristine for the past three outside of those persistent purplish spots on her eyelids.

Every few months when we'd come out here to Chicago, I'd be sure it would be a day the doctor told us we could take Thing 1 off another dose of one of her immunosuppressants.

Today, I'm thinking they'll hook her up to a bag of Solu-Medrol steroids any minute. They might even want us to cancel our flight and stay here an extra day or two for a few more rounds of that temporary JM extinguisher. At best, I'm expecting to head back to the airport with a fistful of orders for a mess of meds I thought we had seen the last of some time ago.

However, I am not afraid.

I am not grief stricken.

I am not scared for my child's life.

That was how I know My Love felt when we first received Thing 1's diagnosis.

That was in October 2002.

That also happened to be my wife's birthday.

Today, I know enough about JM and kids who have had it and beat it (or at least lived long and fairly normal lives with it) to be anything but confident that this is probably one of many bumps on this long, ugly journey with my daughter.

That is not the gift I wanted today, which in true cosmic payback, is my birthday.

However, it is a gift I know I must accept.

+ + +

Maybe the timing of Thing 1's flare is a bit of fate. Maybe it will help us continue our family's work to make people more aware of this stupid disease so we can find better treatments and, eventually, a way to eradicate juvenile myositis and juvenile dermatomyositis for good.

Cure JM, the all-volunteer nonprofit and only national organization solely dedicated to this cause, will have a team of runners, including My Love, raising money and awareness in the Seattle Rock 'n' Roll Marathon on June 25. (I'm still just a water boy -- we all must know our roles in life). That weekend Cure JM will also host its annual national gathering of JM kids and their families as well as an educational forum that will teach dozens of doctors from around the world about juvenile myositis, how to spot it, how to treat it and how to help us find a cure for it.

You, my blogosphere friends, helped Cure JM win $250,000  in the Pepsi Refresh project with your votes, Tweets, Facebook posts and other gestures. My family and all JM families are grateful and highly indebted to you for that. I hate ask for your money to help our fight, but until I hit the lottery so I can fund the whole organization on my own, I don't have much of a choice.

Please visit our family's FirstGiving page to donate to Cure JM online or by mail. Even if all you can spare is $5, it will be $5 more than Cure JM had before.

If you can't donate (or even if you do), you can still help us spread the word about Cure JM's mission via email, Twitter and Facebook by forward either of these URLs:

Our family's page: http://tinyurl.com/3hnfxjd

The Cure JM page: http://www.firstgiving.com/curejm

Thanks for your patience with this post and my pleas. I'll keep you updated on Thing 1 as well as continue to be the goofball you expect me. That's my job.

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