Cowboys. Members of the race formerly known in the States as Indians. As classic as they come
Tigerland – A Vietnam War movie starring Colin Farrell. I hear its pretty good.
No need to comment here unless you want to tell me about your Memorial Day weekend. Better yet, leave a joke but keep it semi-clean. I have a fictitious image to maintain.
Even better yet: Support our family in the Seattle Rock ‘n’ Roll Marathon with a small donation to help find a cure for Thing 1’s juvenile dermatomyositis. Donate to Cure JM now! We’re nearly at the $3,000 mark.
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.
Under the "STORE CLOSING" sign rested a stack of books with hemorrhage-red covers bearing the title "Too Big to Fail."
The irony had to force a smile.
When Borders Book Shop opened in my hometown in 1992, it ushered in an era of oxymoron retail -- the cozy superstore. It offered 100,000 titles, many at discount prices, and featured comfy earth-toned couches and chairs along with a then cutting-edge treat -- a coffee bar. They might have called their java Seattle’s Best but usually it tasted more like something that had passed through Seattle Slew.
Borders enraged area owners of small, independent bookstores. Volume dealing of volumes! How gauche! A few of these little shops closed quickly without much fanfare, including the tiny Barrett Bookstore in that same shopping plaza. I had treaded Barrett’s industrial-white tile floors many times in those previous years, searching mostly for my school-required literary classics as well as the necessary CliffsNotes that explained why, for example, Moby Dick should enrapture rather than task and heap me. (Damn you, Kirrrrrrk – I mean, MelVILLLLLE!)
Ahab may not have gotten his revenge, but surviving independents did.
Earlier this year Borders' parent filed for bankruptcy, done in by even bigger retailers like Target and Amazon.com. However, I think even those early chain-store foes would agree any bookstore going under, regardless of ownership, is not a time for gloating. Forget the intellectual aspect of it; people have special bonds with bookstores and, (uses cranky old-timer voice) back in my day, those melodious places where we bought our Victrola 78s. These were shelters where you went in your times of joy or need or loneliness to see your old friends and meet new ones who would always accept you into their magical world.
However, I had other reasons to feel wistful about this past weekend's closing. Yes, one is the fear of yet another CVS/pharmacy or -- worse -- bank moving into Borders' shell. Most have to do with my growing up, to some degree, within those brick walls.
For 25 years prior to it being Borders, for my entire lifetime at that point, this place had been a supermarket, the locally owned and operated GranCentral. Not only was it the market my mother hauled me to nearly every week for groceries as a kid, but it was also the one where I lost my innocence to the working world.
For nine months following my 16th birthday, I donned a paper-thin GranCentral green jacket and served.
I combed the parking lot in rain, cold and heat gathering wire-framed carts and cursing the lazy shoppers who abandoned them.
I sorted and stacked sticky piles of returned bottles in the basement, building a fort from the filled cartons where I would eat my lunch and read the latest copies of People or US Weekly.
One time, I spent three hours on a Sunday restocking the freezer aisles without wearing gloves. I recall that day whenever my fingertips go numb, as they sometimes do, when the mercury just barely dips below 50. Consequently, from November to April, My Love often refers to me as "Mitten Boy."
At GranCentral, I learned about unions from the cut they took from my meager check. I also learned about them from my fellow teen wage slave, Pasqual, an impossibly scrawny and heavily accented Frenchman who would skulk and complain until he got his mandated break so he could go outside for a smoke.
I discovered profit margins when I found a pricing sheet that showed how much those rolls we baked in the deli really cost.
I also figured out how to use a box cutter to make end-cap displays without slicing into the product or my fingers. Well, most of the time.
But my best memory (outside of my one date with this totally fine cashier who dumped me with barely the pleasure of gliding over her rolling hills) is of the full-time guys who worked in the deli department. They tended to mismark the prices on our sandwiches so it didn’t cut too much into our meager pockets. On some Sundays after the freshly clipped coupon crowd thinned, they’d cook an extra rotisserie chicken or errantly make an extra cheese steak for whoever had the shift.
For years afterward, I’d run into some of the deli guys around town or while they were working at their second jobs. There was Red, who was also a typewriter repairman; Mark, an organist at a local church; and Mike the Greek who, well, was Greek. They always remembered who I was just like they always remembered their regular customers' orders.
After waiting in line for several minutes to make my final purchases from the local Borders, I helped the cashier peel off the dozen or so price stickers from my new books and then pack them into plastic bags. I asked about her plans.
"This is it for me," she said. "And I'm doing my book shopping online from now on."
On my way out, I took solace in the fact I didn't need a shopping cart to get all these tomes back to the minivan. The thought of some poor kid slogging through the parking lot because of my laziness, to this day, still gives me pause.
* * *
THING 1 UPDATE: Rash improvement
The first IV infusions of steroids went well over the weekend. Her rash is already looking less angry, as My Love says. This weekend will be two more doses of IV steroids plus a 6-hour-long infusion of IVIG. Oy.
Thoughts and prayers welcome as are your donations to Cure JM to help all kids with juvenile myositis diseases.
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.
Your mother may not be the first caretaker you met upon entering this world, but let’s face facts -- her bedside manner far exceeded that of the doctor who yanked you from between her womb, held you up by your ankles and then slapped your butt.
It’s no wonder then that many adults still seek the counsel of Dr. Mom. We do this even though, if she is like The Mother of All Uncoolness, her knowledge of surgical breakthroughs is limited to those procedures performed on Hollywood starlets as reported by the National Enquirer.
Why do we always come back to mama's advice?
Because we figure the lady must onto something. She spent the majority of her life without using seat belts, hand sanitizer or soy milk! She survived despite our childhood attempts at giving her heart failure! She’s Robo-Mom!
Therefore, in honor of Mother's Day this weekend, let's reflect on some medical wit and wisdom that my mom, and probably yours, has dispensed through the years with neither a prescription nor a malpractice suit.
"Don't go out in this freezing weather with wet hair! You'll get pneumonia!"
In recent years, science – in the form of people with white coats and clipboards paid for by the cough syrup industry – has discredited this theory linking human rhinovirus to damp manes and chilly temperatures. Turns out, moms were right to warn us for a different reason. The icicles that can form in your follicles during these conditions can snap off and hasten the development of the hairline malady called "isolated widow's peak" or, more commonly, "the David Letterman floating isle of hair." Watch for this theory to be debunked soon in a major clinical trial underwritten by the makers of Rogaine.
"Don't forget your rubbers!"
Oh, Mother! Who knew your reminder to use those stretchy overshoes to protect my Buster Browns from the mud and puddles was really a way to ingrain the need for me, in my randier moments later in life, to protect my boy parts from the clap! On the other hand, maybe you were protecting yourself from prematurely being called "Grandma." Either way – well played!
"Dab some Mercurochrome on it."
For you youngsters, Mercurochrome was the antiseptic of choice for families throughout much of the 20th century. It didn't burn like hydrogen peroxide and it dyed your skin a brilliant orangey red for days. This made even the most minor of scrapes appear bloody and life threatening which totally impressed friends at school. The effect also made Mercurochrome an essential ingredient for any kid's Halloween makeup. Zillions of tiny brown bottles sold later, someone realized the "Mercur" in the name stood for "mercury" and that slathering a toxic metal on an open wound may not be "good." The U.S. Food and Drug Administration snuck in the ban on the domestic sale of Mercurochrome while the nation was obsessed with the intimate revelations about President Clinton's affair with intern Monica Lewinsky. In a further insult to American moms (and wives), around the same time the FDA approved the use of Viagra.
"Sometimes you have to be your own doctor."
My mom loves this one. Not for me, but for herself. She uses it to justify occasionally skipping a few handfuls of the 477 medications she's on for high blood pressure, a condition caused by raising my sister and me. "If I take all those pills, I'm running to pee every six-and-half minutes!" she says. Which raises the question: What's more disturbing – the image of one's mom going to the bathroom or the image of her breaking out a stopwatch, calculator and spreadsheet to determine the exact intervals between her goings to the bathroom?
"Let me kiss it and make it better."
No comment. I don't mess with what still works.
Every Wednesday night at 8 o’clock, the Uncool Family huddles together in front of our wondrous 46-inch flatscreen to watch our favorite family show, The Middle.
While My Love and I find most episodes of Modern Family to be gut-bustingly funny (especially the Valentine’s Day ones in which parents Phil and Claire attempt to rekindle the passion with some failed role playing … twice), it’s a little too adult for The Things. The chronicles of the chronically underachieving Hecks of Orson, Indiana; however, usually generates several good laughs without the need for me to explain the innuendos, double entendres and why Daddy drools every time SofÃa Vergara bobbles by the camera.
(I also have a thing for Julie Bowen dating back to her character on NBC’s late, great bowling-alley-lawyer show, Ed, but she doesn’t cause the same involuntary reflexive in my salivary glands.)
(Or in my groin.)
The Middle, however, provides much simpler, cleaner teachable moments. For example:
We were laughing along at a repeat episode recently in which the mother, Frankie, throws out her back and is lying flat on the floor. There’s some battle of the sexes subplot going on so she can’t tell her husband she’s hurt herself and when he enters the room, she pretends she looking for a button.
The husband, Mike, announces that he just remembered that it’s their anniversary, so she should “throw on some heels” and he’ll take her to dinner.
“I’ll even let you order what you want and I will have something of equal or lesser value!” Then he adds slyly, “Maybe we’ll even head home for a little dessert.”
Frankie thinks (via voiceover) while squirming on the carpet in an attempt to hide her pain: Oh, God -- I hope he’s taking about ice cream.
Thing 2’s eyes widen.
The boy practically leaps off the couch and yells: “Maybe he’s taking about CAKE!!”
“No, son,” I reply, “I believe he’s talking about pie. Definitely, pie.”
Thing 2 looks deflated and adds a simple, tongue extending: “Bleech!”
Someday his taste in sweets will change but, as I prove quite regularly, they never get any more sophisticated.
Sorry, I meant win The Hustler, the Paul Newman/Jackie Gleason classic about pool sharks (that’s billiards, not swimming predators).
