Sunday, July 13, 2008

This was sent May 10, 2008. Our mounting frustration is apparent...

Hey there -

Another update, and a shameless fundraising appeal. (You've been warned!) And this is loooooong. Sorry.

Mielle did well with the iv steroid treatments. The first go-round was a series of three infusions on three consecutive days. Obviously, it would be hard under any circumstances, but the whole thing was made worse by the timing of our appointments - they got progressively later, and by the end we weren't getting out of there until nearly 10 pm. (The alternative to that lousy scheduling was to wait another week, which we weren't willing to do). However, Mielle handled it well, for the most part, especially after she was settled in with iv dripping, watching a movie.

Anyhow, we survived! And two weeks have passed, and she had another treatment a few days ago. Her skin is definitely looking better looking better, and we're hopeful this means the treatment is having a positive effect. She hasn't reported much change in her leg strength; she's functional but slow on stairs, awkward getting up off the floor, etc. The next step, if iv steroids don't do the job, is a treatment called IVIG, which is an intravenous infusion of immune globulins, a pooled blood product. Yes, it sounds a little creepy some have had good results with it. (And some haven't). The whole treatment plan is very hit or miss - "Let's try this combination of toxic chemicals, and if they don't work, we'll try a different combination of toxic chemicals, and if that doesn't work, we have this other combination of toxic chemicals we can try..." and on and on.

Sorry to sound so negative, but quite frankly, it stinks that there is not a better alternative to treat this disease (juvenile dermatomyositis -- nobody can pronounce it, much less remember it, so I'm giving the name here again. Here's how to say it - break it into parts: der-MA-to-MY-o-SI-tis).

Don't get me wrong - I'm glad to know what it is, and I'm glad that treatments exist, but even when they work as hoped (which is NOT all the time), these treatments are brutal. I've talked about the challenges of steroid-induced personality changes and rage (there are really no words to describe how it feels when your 5-year-old girl says that her brain feels "like it wants to explode out of my head and beat someone up"), and raging appetite and weight gain, but there are other complications that can happen - as a result of the treatment, not the disease - such as diabetes, high blood pressure, bone loss, and bone death. (I hadn't even heard of "bone DEATH" before. Nice.) Stunted growth (Mielle hasn't grown taller in months... but then again, the disease itself also causes stunted growth, so maybe I'm being unfair with that one!) Stretch marks. Thin skin. Cataracts.

I'm just trying to express that even when things are going well, it's awful to see, and live, and experience, the effects of these drugs. And when things aren't going well, it's indescribable. We are doing our best to stay positive and all that jazz, and I think we're doing ok at that. But I'll say it again: there needs to be a better option to treat this disease.

Which leads me to the shameless fundraising appeal. There is an outstanding organization called Cure JM, and it was founded about 5 years ago by two family members of kids with this disease, a mom and a grandmother (two different kids/families). They have done amazing, amazing things in this short amount of time. They have created a website with oodles of information, and a message board so people like me can communicate with one another. They organized the research and publication of a book that covers literally every aspect of this disease. They have awarded over $1.5 million in research grants, and funded a newly-opened clinic at George Washington University that is solely dedicated to the study and treatment of this diseases (as well as the adult version). According to the announcement press release, this clinic clinic was ENVISIONED DIRECTLY BY MOTIVATED PARENTS, AND MADE POSSIBLE BY A GRANT FROM CURE JM.

Since JDM (the "hip" lingo for juvenile dermatomyositis) is so rare, it doesn't get much funding, etc. and so it's up to us to make it happen. Cure JM has shown what is possible, and they are working hard, and effectively.

Just so you know, there is currently no cure at all. People often aske me if Mielle will outgrow this, and the answer is "no". Here's the breakdown: About 1/3 of afflicted children will eventually achieve remission after some number of years of treatment (2 at a minumum, 6 or 7 at maximum), and will never have a recurrence. About 1/3 will achieve remission, but will suffer one or more relapses, and when that happens you start all over again at the beginning with the treatment regime. These relapses (called "flares" in the lingo) can be triggered by something as simple as a sunburn (a SUNBURN!! I mean, come on!!), are often more severe than the initial onset, and they can occur years after remission. About 1/3 will never get to remission, and will always need to be on meds to try and control the disease. All of this is just to say that a child does not outgrow the condition, and basically the uncertainty about whether it may recur will always be there. This needs to change; we need a cure.

Back to Cure JM, and money - it is completely run by volunteers, mostly parents of afflicted kids, so literally ALL of your donation goes to funding research, providing support to kids and families like ours, and raising awareness about the disease.

So, you can see that any money donated to this organization will work hard to help Mielle, and other kids like her, and many other kids who are worse off than her.

You can check out the website:

Don't be put off by the (in my opinion) cheesy intro! You can read lots more about what they're doing. It's all good. There are lots of prominent "click here to donate" links, so I'm confident you can find your way! (And of course, it's tax-deductible).

And, extra-special bonus -- everyone who makes a donation, of any size, in Mielle's name will receive a personal, handcrafted thank-you gift from the hands of Mielle herself! She makes super cool art and you will be a lucky owner of an original piece... maybe a drawing, maybe a finger-knit, maybe a little sewn doo-dad, maybe a popsicle stick creation. Who knows?

If you don't want to donate to them directly, you can still do something to help. There is an organization called, and if you register with them and click through them first when you shop at tons of online stores (all the biggies!) then a percentage of the $$ you spend goes to Cure JM. Here's the link:

Honestly, this one is a no-brainer. It's so easy, and it can help assuage your guilt about spending too much money at Old Navy!

Friends, I apologize for the long-winded post. I've been composing this appeal in my head for months, and it feels good to finally put it down and send it out. Thank you for all your love and support (and I apologize that there are many email responses from y'all, from the last update, that I have not responded to personally -- yet! I appreciate them all - but we're just doing the best we can over here...)

We are scheming about a couple of fundraising type events for the local yokels (a huge yard sale, maybe some kind of musical event) - not sure but will keep you posted. And in the meantime -



Finally, what shameless fundraising appeal would be complete without some sappy images to tug at your heartstrings? Here they are. The first is a shot of a poem Mielle wrote for school. Allow me to translate:

When I grow up I will be a artist
I will work the hardest as a artist
I will paint the ocean blue
To share them with you


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