Monday, May 9, 2011

Her Gift of Flare

CHICAGO – I'm at the children's hospital, waiting on a diagnosis.

If 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.

thing-1-two-weeks-preflarejuvenile myostis flare "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.

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.

juvenile dermatomyositis thing 1 2002

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 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 at 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.

33 comments:

  1. Aw jeez, I'm sorry. I'll keep all of you in my prayers.

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  2. So sorry. Please let us know if there is anything we can do from here!

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  3. Ah man, here's to wishing you some comforting news on your birthday. Instead of buying you a few beers, I'll head over to the Cure JM page and donate the equivalent. My best, dude.

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  4. I was writing a really titillating birthday post for you and stopped by to grab a link. I'm so sorry, buddy.

    My thoughts are with you and your family. Anything you need, you know where to find me.

    I hope the post sends some folks over. If you ever read it, I hope it brings a bit of a smile to your face.

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  5. Here's hoping for a cure - and a good birthday for you.

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  7. Cheryl sent me over, and I'm sorry to hear that your birthday present was not what you might have wished. (Your daughter is adorable, flare notwithstanding!)

    I have lupus myself, and people with that disease are subject to what looks to be the same type of rash. I know the disappointment of having to ratchet up and then wean off the drugs again, and I hope this flare abates quickly.

    In the meantime, I will go visit the link and see what I can do to make your birthday a little better...

    ;)

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  8. Exactly what Earl said.
    Happy Birthday, anyway.
    Best wishes and thoughts that things go as well as they can!!

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  9. Feel bad for you :(
    Happy Birthday, and wish you and your family all the best. Hope Thing 1 gets well soon.

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  10. I'm so sorry you are going through this again. I understand the frustration, having a child with autism. We are here for you to be a negative nellie whenever you damn well feel like it!

    Hugs to you on your birthday.

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  11. Hey Kevin-so sorry to hear this. Think we may be in the same boat with Kelsi :(, and will most likely be in Chicago very soon. Unfortunately Kelsi and Meagan have followed the same path. Hope things turn around quickly!!

    Give Rhonda a hug from me.

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  12. I think we checked into the clinic at the same time today. I am sorry I didn't realize so I could have met you all. We haven't been through this for nearly as long as you (coming up on a year in June). I hope the flare is very short-lived and I am so sorry that she is having trouble.

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  13. hey man, happy birthday and prayers for your little one...

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  14. Hi,

    I’m a student at St. Olaf College in Northfield, MN who is currently taking a class on masculinity in American society. I recently wrote a paper on stay-at-home fathering, and as part of the project, I’m putting together an article on the same topic to submit to a men’s magazine. I was wondering if you would be willing to answer a few questions over email for my article.

    Let me know!

    Thanks,
    Lauren Ehlers

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  15. Happy birthday all the same, my man. My best to you and yours.

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  16. I've headed over from Cheryl's. So sorry to hear about your young lady; sucks to be struggling with something like this. Not the birthday present you would want, but 'Happy Birthday' to you anyway.

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  17. Hang in there, dude. We're with you.

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  18. Wishing only the best for Thing 1.

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  19. Cheryl sent me over, and having read your heartfelt post all I can say is your sweet daughter will be in my prayers.
    Happy Birthday and wishes that this flareup fades into a memory.
    And I'm heading on over to the Cure JM page right now.
    (o:

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  20. 'Tis ever bittersweet, this swirling sea we call life. Hanging up some prayer flags on the Everest of my mind, for a swift recovery and some peace of mind for your and yours.

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  21. I can pray, I can post this to my blog's FB page, and I can even scrape up $5. You hang in there.

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  23. Hey man. Happy Birthday. The best to you and all the Uncools. You sound pretty good. I'm going to go and put this link on my IRL facebook page. Which is actually my son's. I hate facbook.

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  24. Happy Birthday Kevin. So sorry to hear about her flare. I didn't realize you could be eligible to win the prize again, but if you need anything (post, ect...) let me know.

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  25. Thoughts and prayers with you all.

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  26. Happy Birthday! You know we are always thinking of your beautiful daughter and wish and hope for a cure. Our wishes are with you and we hope you are all home soon! Hang in there.

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  27. What a story you have to tell and what strong beautiful girls you have - love and faith...live on it!

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  28. Poor Thing :( I'd help donate if I had anything to donate. I don't suppose they'll take my lovely, green button? It's huge!

    I sure hope they'll be able to do something for her soon.

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  29. great post. I have a friend who raised more than a million dollars for cancer research. I held a blog charity fundraiser and was only able to get a handful of donations. I felt disappointed. His response "it doesn't matter if it is a million dollars or one dollar, you never know which dollar will be the one that finds the cure."....I'll be sharing this on facebook. =)

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  30. I am sorry to read this. My thoughts and prayers and hopes for a quick and permanent remission are with you.

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  31. Catching up and just saw this .... Sending you hugs and love and lots of $$$ too ...

    Happy belated birthday ... Hang in there!

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  32. Shit, Kevin.

    I was saving up to advertise on The Bloggess, but maybe this is more important. I hear she just spends that dough on wine slushies, anyway.

    (Happy belated, and love to the family)

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  33. Prayers and hugs to you and your wife...

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