My conversation with the school nurse at the start of every academic year ends with me say this: If anybody comes down with chickenpox, call me immediately -- it could save my daughter's life.
Chickenpox – deadly?
Most adults remember chickenpox as an irritating childhood rite of passage. No one ever died from excessive itching, right? I didn't, though I still bear a small, circular scar on my right cheek from my fingers getting the best of me during my bout. U.S. Centers for Disease Control and Prevention statistics, however, show that before development of a vaccine in the mid-1990s, chickenpox killed more than 100 children annually and hospitalized over 10,000 for complications, including pneumonia, meningitis and encephalitis. The more severe consequences tended to happen to those with underlying health issues, such as a comprised autoimmune system.
On this #GivingTuesday, please help the hundreds of children like my daughter, Li’l Diva, who have the autoimmune disease Juvenile Myositis. The best way is to donate to Cure JM Foundation via the CrowdRise Holiday Challenge as our nonprofit tries to win $100,000 for disease research.
To refresh your memory, Juvenile Myositis (JM) is a rare and life-threatening disease affecting one to five children in a million. Li’L Diva was diagnosed with it 11 years ago at age 2. JM can affect virtually any system of the body, and there is no cure … yet.
Cure JM Foundation is a nonprofit organization created and managed by families of children affected by Juvenile Myositis (JM) – the leader of which is My Love. The group’s mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure. In a decade, Cure JM has raised more than $4 million – much of which has gone to research by buying lab equipment, funding fellowships and paying for various medical studies.
A month in and with a month to go, Cure JM has already raised $61,000 in this contest and is the top fundraising charity of more than 450 vying for the prize – an additional $100,000.
If you can help by donating or spreading the word, all the Uncools would be grateful. Especially if you donated, but still so if all you did was share a link.
My Love had an air of curiosity in her tone when she said this over the weekend:
“The neighbors said they saw you out running this morning. They said you looked … ‘very intense.’”
“Yep, I saw them,” I said, digging through the mini-fridge for hoppy re-hydration. “And that’s how I look when I ‘m concentrating on not dying.”
I sensed her glare without turning around.
“OK. Concentrating on not dying more than usual,” I clarified. “No one wants to be found a victim while wearing Day-Glo green sneakers and sweaty jogging shorts without underwear.”
+ + +
I run on Sunday to put an end to Juvenile Myositis. I’m about $3,000 shy of my $15,000 goal.
That’s Friend to the Uncool “Daddy” Clay Nichols of DadLabs.com. He ran the Baltimore marathon (26.2 miles in 3 hours, 33 minutes and 35 seconds – I’m spent just typing that) this past October on behalf of my daughter and Cure JM, raking in a pretty penny to help our cause.
Clay wrote about his experience in the latest edition of Austin Man Magazine , and it got me and My Love a little misty. Give it a read, it’s called “Why I Run.”
One correction: Clay elevates me to founder of the organization. I’m only Cure JM’s pack mule. Or, depending on my mood, it’s chief jackass.
NATIONAL CURE JM FUNDRAISER JULY 21 IN CHICAGO! RUNNERS WANTED!
Since we are on the subject, 2013 marks the 10th anniversary of Cure JM’s founding. During that time our all-volunteer group has raised approximately $4 million, the vast majority of which goes directly to doctors and researchers trying to find better treatments and a cure for this rare autoimmune disease that Li’l Diva has had for that entire period.
The event has a13.1-mile run and a 3-mile "mini-marathon" (yeah, like that makes it sound better to sloths like me). If you are a runner or know one who may be interested in participating and raising funds for a great cause that helps sick children, tell them to save the date.
Don't register yet!! We'll get the details and necessary links up on the Cure JM web site soon. This is just for you to mark your calendar and get your training schedules set.
Time to wrap up all this Cure JM/running/fundraising stuff with a whole mess of photos and ::cough, cough:: insightful commentary.This is the only photo I’ve seen of me during the race in which I don’t look on the verge of imminent collapse.
See what I mean? You would expect the next photo to be of me clutching my chest as I yell, “It's the Big One! You hear that Elizabeth? I'm comin' to join ya, honey!”
I ask, “Where is Jennifer Garner and her rubber gloves when I am in my hour of need?” Yeah, probably oiling down that Affleck clown.
Today, I’ll drive five hours to Baltimore where I will meet my fate. On the outside, I am going to be the happy-go-lucky-sarcastically-whiny ol’ self you’ve learned to tolerate. Inside, I’m going to be a gooey heap of wet linguine because I’ve been carbo-loading for 19 days. My pee is pure starch. Lumps included.
Actually, I think I’m going to be fine. I’ve have never missed or cut short one of my training runs as much as I’ve wanted to. If I can motivate myself without anyone watching, I’m sure I’ll do even better when pushed by several thousand other runners exuding confidence, adrenaline and rancid B.O.
Here’s some of my tips, observations and thoughts from this whole hellish process:
In an uncontrollable fit of neatness to avoid actual work this past weekend, I cleaned my drawers.
Not those drawers, which are done on Monday with the rest of the family unmentionables, but the filing cabinet drawers in my home office. That reminds me, we’re out of Shout.
After sorting through a desk full of paper that means nothing at all, I found a thick packet filled with colors and textures in paints and crayons and markers and pencils and stickers. It was the kids’ artwork from the days when I was still the center of their world instead of that guy who knows all the parental control codes to the household electronics.
I went through all the papers. The homemade Father’s Day cards, the school art projects, the five-minute masterpieces made on long summer days between snack and cartoon breaks.
I pitched a few things that held no special significance, such as a sheet with randomly placed shark stickers Excitable obviously created and a coloring book butterfly outline polka-dotted with splattered water color from the Li’l Diva.
I'd like to write a real post for you, but I have to run.
Not figuratively. For reals.
One foot in front of the other, knees up, arms pumping. Ooof. I'm breathing heavy thinking about it. Medic!
I'm still stumbling through my training program to help me stumble through a 5K in Baltimore to raise money on behalf of Li’l Diva and Cure JM Foundation next month. With only a few weeks to go, I can say without qualification that when I keel over that finish line I will leave one sweaty but fit corpse.
However, our real family runner, My Love, had knee surgery a few weeks ago following advice from her doctor that the bottom half of her right leg might randomly fall off. This would require us to change her name to Peg.
As a result, I'm taking her place. I'm also working on an apology letter to the National Asphalt Makers and Layers Association.
I've been adhering to a running schedule that I found online (because everything on the Internet is helpful and true) that gradually lengthens my distance and running time in hope of turning this couch potato (honestly, I'm more of a "desk doughnut") into a 5K competitor. Three times a week, I’ve been slogging around the track at school near our house and, as of today, I can confidently report that [checks pulse] I'm still alive.
Running has definitely increased my stamina. I now only require CPR every other run. It hasn't helped with my memory or math skills, though. I've lost count of my laps several times. Sadly, each time my goal was running three.
Yet somehow this past weekend, I managed 2.25 miles (3.62 kilometers for the metrically inclined or 7920 cubits for those building flood arks). It didn’t feel good but I’d be seriously concerned if it did.
The one thing all my huffing and puffing has produced, aside from yellow stains under the armpits of several T-shirts, is a smile on My Love’s lips. Every time I roll my eyes and groan "I'm going for a run," her entire face lights up the way mine does when party hosts offer me beer. Of course, these days My Love is on a lot of Vicodin.
Whoa. Look at the time. Let me throw some sneakers on my feet, Band-Aids on my nipples and Vaseline between my thighs. I have promises to keep and miles to go before I write.
And obviously, I have some real issues with chafing.
+ + +
Our family is halfway to our fundraising goal of $20,000. Please throw a few tax-deductible dollars our way to help Li’l Diva and other children with juvenile myositis kick this disease’s butt.
You have helped Cure JM Foundationwin $50,000 to research the cause, treatment and cure for juvenile myositis, the rare autoimmune disease that Li’l Diva and our family has dealt with for the past 10 years.
Your votes, tweets and shared Facebook links helped us receive almost 9,000 votes in the latest Chase Community Giving contest. That put us in 20th place out of more 4,000 (yes – 4,000!) organizations vying for the money.
Not bad for a handful of concerned parents and family members volunteering their time to help the few thousand children in the United States affected by this mysterious disease.
Your kindness to my family and our larger Cure JM family in the past four years has helped us win $300,000 in grants, raise about $50,000 in donations and spread awareness throughout the digital world and beyond.
You wear it well, friends.
Thank you, again and again. Not just from me, but from the children your caring will be helping soon. Here are a few of them:
If you’d like to do more, please donate to Cure JM by supporting my “run” (and yes, the quotes are warranted) in Baltimore next month on behalf of Li’l Diva. The goal widget is now posted on the blog home page if you want to check out our progress in reaching our goal.
My Love is perplexed which is annoying because that’s my household specialty.
“How does Cure JM only have 2,800 votes in the Chase Community Giving contest? It only takes a minute and a few clicks on Facebook. I’m not expecting us to win $250,000 again but we should be able to get to number 11 for the $100,000,” she said to me last night after an hour of conference call brainstorming with other parents of kids with juvenile myositis.
She looked at me.
“Hey, I’m trying,” I said. “I’ve Facebooked. I’ve tweeted. I’ve emailed people. Now I’m hitting people up via instant message. I never IM people. My online friends are thinking I’ve been replaced by a pod person who will next be trying to convince them to try some tasty soylent green.”
:: crickets ::
“Soylent green,” I said. “It’s people.”
:: crickets leaping to their deaths::
Then I threw my daughter under the bus.
“Hey, what about the girl? What’s Li’l Diva doing? This is all to benefit kids like her. She has a Facebook account. I hear the youngun’s love the Facebook and the mouse clicking and the liking and the poking!”
Li’l Diva was summoned away from another cringe worthy episode of Dance Moms to face the parental music.
She spoke like the middle-schooler she is.
She said, “I don’t want other kids to know I have a disease.”
Correction. She spoke like the average, normal middle-schooler she is underneath the makeup she started wearing this year to hide the telltale mark of juvenile myositis – the bright butterfly rash across her face.
My Love and I looked at one another.
“You don’t have to say you have the disease,” My Love said. “Say you are just trying to help kids who do have it.”
All I could do was nod.
+ + +
Cure JM Foundation, the tiny nonprofit that searches for a cure for our daughter's autoimmune disease, is SERIOUSLY in the running for $100,000 from Chase Community Giving and still has a chance for the big $250,000 grant.
This is a quick one-time vote (OK - two times if you vote then share the link and someone clicks it; three times if you are a Chase bank/credit card holder) that takes only a couple of mouse clicks. Please vote for us and our charity partner, Rett Syndrome Research, before Sept. 19 and spread the word.
You know those people who obnoxiously tweet, Facebook and blog widget their running times and distances?
I hate them.
I exaggerate.
I only hate every fiber of their obnoxious “put down the Doritos and look at me acting all superior and health-conscious” beings.
Know who hates them more than me?
My Love.
But only because she can’t be one of them.
After running two marathons and three half-marathons over the years to raise money to help find a cure for Li’l Diva’s juvenile myositis, My Love has been officially scratched from the Baltimore Running Festival on Oct. 13, 2012. She goes under the knife next week to repair a torn meniscus in one of her knees.
The bad news is we are visiting a local children’s hospital today so she can get a 4-hour IV of a new med, Rituximab, that may or may not help and carries with it the usual suspects of “rare” side effects.
It’s the see-saw battle we fight regularly; the tightrope we walk between employing a treatment that may finally reset her immune system to its proper working order and risking the potential dangers, short- and long-term, caused by introducing all these toxins into her system.
We have done this for nearly a decade now and we will continue to until the right combination of science and luck cures her. Giving up is not an option.
There’s nothing you kind people do during today’s infusion other than keep her in your thoughts and, if you are inclined that way, your prayers.
If you would like to do something beyond today, here’s my request:
Scene: Our kitchen, last night, My Love wanders in from work, exhausted, spent, the day’s burdens pinning her shoulders for the three count. Me – bouncing up and down like a pup, pre-neutering.
ME: “Guess what, honey, guess what? I’m going to be on the Internet!”
MY LOVE: “Uh, you’re on the Internet every day.”
Bubble. Burst. Ka-BLOOEY!
Actually, here’s the deal:
I will be appearing / stuttering / flop-sweating live via Skype today -- Wednesday, May 2 -- at 3 p.m. Eastern time on DadLabs UStream show.
Sounds heavy but you know I won’t be able to go more than 15 seconds without some sarcastic remark that will get me in trouble with the authorities. Or worse, in trouble with My Love.
DadLabs.com, if you don’t know, is a great parenting site whether you are a male or female. Lots of fun videos and information about kid products, parenting technology and general parenting advice … and humor.
You can watch the show without registering, but if you want to comment via chat you need to register here. This show will also be archived for posterity … and future blackmail.
Wish me luck.
Better yet, wish my antiperspirant extra strength.
SEATTLE – As a non-runner, my main job on charity race days is usually one of logistics. This is a polite way of saying I lug supplies and pick up trash.
This year, I would also set up the Cure JM tent in the finishing area of the Seattle Rock ‘n’ Roll marathon. Hang banners, blow up balloons, lay out snacks and ready literature to hand to passersby. After, of course, I schlepped said stuff to said tent.
The tent serves as our foundation’s headquarters for the day. Our volunteers gather here before heading off to their duties, be it handing out water or food to runners on the course or writing down racers’ bib numbers and times when they finally crossed the finished.
The tent would be where those runners braving the miles of Seattle hills on behalf of a child with juvenile myositis would meet up with that child, family and friends after their journey.
It would be where our JM children could hang out in the shade, play and just be kids while we adults did what we could to draw attention to their cause.
If only we knew where this tent was.
The race organizers had chosen cancer to be the “exclusive” disease to benefit from the day’s profits and publicity, so our little autoimmune disease was even farther below the radar than usual with the people in charge. No official I talked to at the staging area had any clue who we were or where we should go. In essence, without a tumor, we were personas non grata.
In desperation, I wandered the grounds until I found “Charity Village,” the section where groups like ours normally are placed. I headed to the tent of one of the international cancer mega-charities, which was festooned with its signature purple and green colors.
Unlike our mishmash of big-hearted volunteers, the folks working for this group are fundraising professionals. They register their cause as a major sponsor in thousands of races a year, recruiting hordes of runners and volunteers from around the world. If one of its runners raises a certain amount of money, the charity picks up their tab not only for the race entry fee, but often hotel and travel costs. About a year before Thing 1’s juvenile dermatomyositis diagnosis, My Love ran a half marathon in Alaska on behalf of this group. In exchange for her raising $3,000 for their cause, the charity picked up about $1,500 in her expenses, meaning only half the money she raised really went to the cancer cause.
If anyone would know whose cage to rattle about our tent, it would be these folks.
Sure enough, once I explained to one of the guys there that the name of my charity was the one plastered across the bright orange T-shirt I had on (“Cure JM. No, not Cure Jim. J. M. Juvenile Myositis. Yeah. It’s no cancer, but it keeps me busy.”), he hit a couple buttons on his phone and in a minute, I had my answer.
“Great, thank you so much,” I said. “By the way, how many runners to you have in the race?”
“About a hundred,” he said.
“Really? We have about a hundred, too,” I said while nodding.
Then I walked away, thinking to myself, “Wow – you folks are really slacking off.”
+ + +
The whole weekend was a huge success for Cure JM.
The foundation raised more than $180,000 with more more still coming in. Team Uncool hit its $20,000 goal (thanks to all of you who donated and for those of you who didn’t, our FirstGiving page is still open).
In addition to our 100 runners, we had more than 40 families – including one from Abu Dhabi -- attend the education conference we put on and more than than 40 medical professionals, including an Order of Canada winner (that’s the Canuck version of the U.S. Presidential Medal of Freedom), come to the daylong medical forum we held at Seattle Children’s Hospital to help doctors and health care personnel learn more about diagnosing and treating juvenile myositis.
Here are some photos taken by me and some of our great Cure JM participants from the weekend. Enjoy. And again, thank you.
Just part of Team Cure JM at the race.
Cure JM Chairman My Love lectures us. Yeah, don’t look surprised.
My Love and I, post-race, mid-beer.
One of our runners listed some of our Cure JM kids on her legs.
Thing 2’s Little League team started the season 0-8 this spring and the only bright side to that is that I’m not to blame.
You can look it up. My name is nowhere on the official league coaching roster.
I put in for the job but, as seems to be the case every year with our Little League, the folks on charge passed on me. They obviously aren’t aware of my work in the dreaded local youth soccer league where I have proven my obvious talents for coaching youngsters, a deep respect for authority and, most importantly, my patience to tolerate the little nosepickers week after week.
Instead I’m one of those dads. You know, the fun and helpful ones trying to relive their childhoods. I show up at practice in my old softball cleats, wad of top-shelf Bazooka in my cheek and a load of ultracheap Dubble Bubble in my pockets for the kids. I pitch batting practice, shag flies and try to impart wisdom about the finer points of the game like everyone lining up in parallel lines to play catch so an errant throws doesn’t clock one of your teammates in the back of the head.
I also try passing on the wisdom learned from my many years of playing ball. However, since I spent most of my time in high school warming up pitchers in the bullpen, I’m pretty much out of material once I explain the importance of a proper fitting protective cup.
I did prepare just in case I made a leap to the bigs this season. Over the winter, I bought a few instructional videos in which Hall of Fame infielder Cal Ripken Jr. and his less talented but far more entertaining goofy little brother Billy pass on “The Ripken Way” of playing the game. It’s good stuff. They explaining basic skills and drills, breaking everything into digestible nuggets and what kid doesn’t love nuggets?
One principle they teach in hitting is the need for the batter to shift his weight get more power into his swing. The best way to do this is for the batter to bring his hands back a bit before swinging to gather his energy and strength, as they note, like a cobra that is about to strike recoils before attacking.
I’ve been thinking about that mantra a lot lately, but it has nothing to do with baseball.
I spent this past Wednesday driving 70 minutes each way to the children’s hospital with Thing 1 asleep in the backseat most of the way. In between her snoring and my skipping back and forth across the tracks of a Stone Temple Pilots compilation CD I made 10 years ago, we visited our local specialist to update him on her juvenile myositis flare.
While the rash on her body looks better, Thing 1’s neck and trunk muscles have grown weaker in the past few weeks even with all the IV steroids and other meds coursing through her veins. She’s not falling over when sits on the couch, like she did at her worst at the tender age of 33 months but she’s not quite the spunky tween I knew only three months before.
“Go back to go forward,” Cal Ripken Jr. said into my left ear.
Through all that Thing 1 has gone through since this relapse two months ago, the news of weekly injections was the first to bring on a full-fledged meltdown.
“No no no no,” she cried, bawling into a pillow on the couch. “I don’t want shots. No no no no no. Don’t make me get shots again.”
“It’s only for a little while, sweetie, it’s to make you better so we can get you off all these other medications.”
“No no no no,” she wept, refusing to pull her face out of the cushion. “No more shots, Daddy.”
Thing 2, like any little brother, is normally his big sister’s mortal enemy. But there he sat on the lounger across the room, his lips curling and eyes welling. Then he ran into the kitchen and offered to his sister the Whoopie Pie dessert he had been hoarding.
He even offered to take some of the shots for her. I think he would if he could, at least until he saw the uncapped 27.5 gauge needle in my hand.
“Go back to go forward,” Billy Ripken said into my right ear.
I wish I could go back, even if it was just to two months ago. We wouldn’t need to go forward after that. We could just stop time and live forever in the moment.
# # #
DONOR TO MATCH YOUR CURE JM GIFT DOLLAR FOR DOLLAR
If you haven’t donated to help Cure JM Foundation put an end to this disease that Thing 1 can’t seem to shake, then I have good news.
A special donor has come forward with an offer to match every dollar our family raises between now and race day (June 25), up to a total of $3,000.
So your $3,000 plus the donor’s $3,000 would put us just shy of the $20,000 fundraising goal our family has set for this year.
In either case, Murphy, Murph, the Murphinator, Murphilicious, sometimes Murpy or just plain Murp (because the first time I ever made a name tag for you, I inadvertently forgot the “H” in your name), you do your species one better.
And your re-diagnosis comes, yes, on your birthday to boot.
Now you and your girl are on some of the same meds. Again.
“You hear that, puppy?” she says snuggling her rashy face against your pocked noggin. “We’re in this together!”
E.B. White once wrote:
"A really companionable and indispensable dog is an accident of nature. You can't get it by breeding for it, and you can't buy it with money. It just happens along."
And we couldn’t be happier that you happened along in our lives.
Happy 5th, my four-legged friend.
Now stop licking me there!
I mean it.
Quit it!
* * *
Throw Murphy’s girl a bone. Donate to Cure JM to support our family’s efforts to make sure no children suffers from juvenile myositis diseases ever again.
The morning coffee barely starts to drip into the pot when I start drugging my daughter.
Two pinks. One white.
“Do I need to take my regular medicine, too,” she asks.
“I guess so, Sunshine,” I say. “Bottoms up.”
Among the usual ovals and circles in her daily pill box, there’s now a grainy tablet the color of wet sand.
And now there’s not.
Two liquids: one white that reminds me of chugging red Hawaiian Punch at childhood birthday parties; one that’s a sickly yellow, oily and best not inhaled.
She washes them down with milk and the last two items in the “SUNDAY” compartment: two vitamins in the guise of Gummi Bears.
“When’s Grandpa gonna bring the donuts?”
“Soon. Grandpa’s an early riser, too.”
The sun finally shows itself and, shortly thereafter, so does the nurse. Soon she’ll start dripping in 50 grams of Intravenous Immune Globulin (IVIG).
Literally, dripping.
For six hours.
Any faster could cause headaches, rash, oh, kidney failure. Nothing big.
“What time did you pre-medicate her with Benadryl and Tylenol?”
“About 7 o’clock or so,” I say. ”An hour ago.”
“Good.”
Drip.
Drip.
BEEEPBEEEPBEEEPBEEEP
Drip.
BEEEPBEEEPBEEEPBEEEP
Drip.
Drip.
Drip.
Dr-
BEEEPBEEEPBEEEPBEEEP
IVIG is thick, the pancake syrup of intravenous medicines that treat Juvenile Myositis especially when still cold from the refrigerator. It causes tiny pockets of air in the line that frequently set off the pump alarm. When this happens, the nurse opens the pump door, pulls out the tubing and flicks the bubbles loose until they float harmlessly back up into the drip chamber. The tubing goes back into the pump, the door close and a button resets the pump.
This happens every 3 to 15 minutes.
For six hours.
The nurse remains patient. The patient remains calm.
EPILOGUE: The infusion went perfectly well, including the 90-minute Solu-Medrol drip that followed and me (yes, me) flushing the line and pulling the needle from Thing 1’s arm.
Parenting – it’s not for spectators, people.
A laptop with WiFi, a video from the thoughtful Magpie Musing and several episodes of the second season of “Monk” on Netflix keep Thing 1 well entertained.
I didn’t miss those marathon sessions of Disney Princess Monopoly Jr. we used to play during IVIG infusions for one minute. Or one drip.
And yes, Grandpa arrived with the donuts in the nick of time.
* * *
As always, we welcome your good thoughts and your donations to Cure JM to help all kids with juvenile myositis. Our family is up to $2,750 after only two weeks of fundraising, most of it thanks to readers like you.
Waiting on doctors. Waiting on home healthcare services. Waiting on insurance companies.
They are trying to get on the same page so the treatment of Thing 1’s flare can begin:
3 straight days of IV steroid doses; then a week later, two days of steroid drips; then one a week for two weeks. These can cause moodiness, high blood pressure, excessive hair growth, weight gain, cataracts and increased risk of infection.
A monthly dose of IVIG (Intravenous Immune Globulin), a refined human blood product that takes three to six hours to infuse. This can cause headaches, rash, fatigue, hypertension and, in worst cases, renal issues and aseptic meningitis.
10 mg of oral prednisone a day. See the first bullet point.
20 mg of Prosilec twice a day to prevent the prednisone from eating her stomach lining and GI tract.
It’s the same general treatment doctors put on when she was first diagnosed nine years ago. It’s the safe course, the one we know worked before with minimal problem and, in theory, should work again and nip this off in a few months.
This standard bill of fare wasn’t the first idea her doctor presented.
She mentioned trying Rituxan, another immune suppressant often used in non-Hodgkin's lymphoma, Crohn’s disease and rheumatoid arthritis. It’s considered a “third-line drug” for juvenile myositis patients, one you try when the primary treatments (steroids, methotrexate) and the complimentary treatments (IVIG, CellCept, plaquenil) fail or no longer do the trick. It’s success rate, at least in the JM kids we know, has been hit and miss; it’s side effects can be nasty.
The treatment would be two IV doses, see what happens, then evaluate what to do next.
“The reality is we need better treatments,” the doctor told me.
Until those are found, we decided to make her better with the devil we know.
All this is actually good news.
Thing 1’s blood work looked better than expected; her evaluation with the physical and occupational therapists showed only some minor loss of strength in her neck and truck muscles (she could barely do a sit up – a reality that almost made her cry, had problems holding her neck up for barely 60 seconds, could muster only half-hearted complaints about the exam taking so long).
Given the photos and descriptions we had emailed her the previous week, Thing 1’s doctor said she “much better than I expected.” But the prominent rash and other skin issues, including some tiny pebbles of calcinosis on her fingers and knuckles, are the clear warning flags that something bigger is crouched beneath the surface, ready to attack.
Time for us to stop waiting. Time to fight. Again.
* * *
It wasn’t all drama in Chicago; there was also sports.
Months ago, as a birthday present to myself, I bought us tickets for Sunday’s Cubs game in the wonder that is Wrigley Field. I was last in The Friendly Confines about 15 years ago and, I’m happy to report, that little has changed. The Cubs still lost.
The pink hats were a giveaway for Mother’s Day. Suits me, no?
Thing 1 declared the nachos not nearly as good as those we had the previous Mother’s Day on the South Side at New Cominsky Park or whatever they call that concrete thing the White Sox play in.
* * *
We arrived back home Monday night, exhausted but optimistic. I went to bed feeling relieved despite it all.
When I woke the next morning, I looked in the mirror and saw one last birthday present.
That was SOOOOO not there when I left for Chicago Sunday morning!
What’s really scary -- I talked about being disappointed on my 40th birthday when I awoke to find my hair hadn’t suddenly turned white. Classic Uncool definition of “too little, too late.”
Well, as my dad says, I don’t care what color they turn as long as they stay put. Hair-dee-hair-hair, dad.
* * *
Help heal Thing 1 and all kids with juvenile myositis diseases! Support our family as we participate in the Seattle Rock ‘n’ Roll Marathon by donating to Cure JM.
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.
"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.
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.
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:
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.
The doctor, to my surprise, almost immediately said we could reduce my daughter’s med doses in the morning and the evening.
Scene: Our kitchen, last night, My Love wanders in from work, exhausted, spent, the day’s burdens pinning her shoulders for the three count. Me – bouncing up and down like a pup, pre-neutering.
