Tuesday, May 29, 2012

Run for this Cure JM Kid’s Life

The good news is two meds have been dropped from Li’l Diva’s regular routine of pills and shots to keep her juvenile myositis in check.

i need a cure jm 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.

You know: fever, aches and death from a brain infection.

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:

We need runners and volunteers for the Baltimore Running Festival on Oct. 13, 2012, to help us raise money and awareness for Cure JM, the all-volunteer nonprofit that supports children like Li’l Diva as they fight this potentially debilitating and deadly disease.

People can sign up for one of five runs – marathon, marathon relay (four people running 6.5 miles each), half marathon, 5K and 1-mile Kids Fun Run. Our goal is to have at least 100 runners representing Cure JM and raise enough money to pay for an entire research study into the disease.

If you are not a runner I hold nothing against you; however, I ask that you pass this information on to a runner in your life or your readers (thanks, Angie Uncovered!) or your tweeps or your Facebook friends – heck, why not all of them? We Uncools and the 17,000 kids affected by JM worldwide would greatly appreciate it.

But know this: This year … even I’m running.

Don’t get all gushy and congratulatory, I’m only doing the 5K.

Still, given my known hatred of running, this is pretty big deal for me. As usual, My Love is doing the half-marathon again and the kids are doing the Fun Run. I’m sure all of them will finish in better shape and time than me.

The other option is to BE A VOLUNTEER, in real life at the event or a virtual one who helps raise funds for the cause without leaving home.

Here are the details on the event and how you can help as a runner or volunteer:


I’m happy to announce a couple of friends of the blog have already signed up:

And yes, you can always just sponsor our efforts through a donation to Cure JM, but I’d really like to see you there fighting alongside with us.

UPDATE (5/30): Infusion took 9 hours but all went well. Got home at 11:30 last night and Li’l Diva is back at school this morning.


  1. Just wrote a post about it. For the record, though, I don't know if I'm uncool-by-association!

  2. You? Running? Once again you and your family amaze me.

    1. Barely skimming the surface of my bag of tricks.

  3. 8 years ago I had non-Hodgkin's lymphoma, and I took Rituximab during each and every chemo session. For what I had (the immune system's B cells had run amok), it worked miracles. I had no cancer symptoms within 24 hours of the first treatment, and they think all the tumors were gone by the time I took my second treatment. (Still, to be on the safe side, I had 6 more months of treatments before I was in the clear.)

    I don't claim to know everything about the drug, or how it may work in someone with JM, but my understanding of how it works is that unlike traditional chemo drugs, it's tailored to do one thing and do it very well, and so it is relatively side-effect free. (Your mileage may vary, etc., etc.)

    Best of luck to the Uncools, form all the way over here in Arizona.

  4. I know exactly what you mean about trying new meds and ALL THE WARNINGS ABOUT SIDE EFFECTS that have me throwing the brochures to the ground and saying absolutely not till we've proven everything else ineffective. It's scary. I'm not even in charge anymore and I'm still scared. I have a feeling I'll be living in this tenuous state for quite some time.

    I don't even know what wish to send your way; but I trust you know my heart.

    1. We know the trials of getting kids healthy too well. Thanks and my best to Lainey.

  5. Thing is.. as a parent, I think we'd all run to the ends of the earth and back for our kids.

    So you running... I am not surprised or scared. :)

  6. How did the infusion go? Hopefully well and hopefully it is the magic part of the science formula to get her immune system "back to good." Rituximab is Cait's next option. Fingers crossed, breath being held! Run like the wind!

    1. All went well. She's back at school this morning.

  7. "Fun Run" is an oxymoron. But Dad 2.0 is right with you.

  8. Nice to hear it went well. And good luck for the run :). *goes off to click share buttons*


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