Happy Holidays all. We recently got the results of the bloodwork from Mielle's latest Chicago visit, and the news was good. We seem to have finally hit upon a combination of meds that is keeping her disease in check. Hooooooooray!
We have been very slowly, very cautiously tapering her prednisone over the past few months, and so far she is tolerating the reduction without having a flare-up. Yay again! Her current dosage is about 6 mg/day, as opposed to 30 mg/day at the height of things. It is still a hefty dose for a small body, and she still experiences side effects, but much less extreme than what we saw over the summer. She has shed a few of her prednisone pounds and is still chubby, but not obscenely so. She still has mood/temper issues but, again, much more manageable. The taper continues and we are holding our breath and hoping that she can maintain as the dose comes down.
When I tell people the good news, they often ask whether this means she is in remission. The answer, unfortunately, is an emphatic NO. Remission means no meds + no symptoms, and we are most likely still years away from that even in the best case scenario. But at least the meds she is on are actually doing the job of controlling the disease. This was not the case earlier in the year.
Lately we have had glimmers of the "old" Mielle coming back. I suppose this may sound dramatic, but this is how I experience it, and how close friends have described it as well. For a long time I've felt as though I'm looking at my girl through frosted glass, or underneath deep water; I could recognize her, but just barely. Like there's been a barrier between her and the rest of the world. Lately it's as if, every now and then (and more frequently as time goes on) the barrier seems to melt away and in a comment, a gesture, a laugh, we get a glimpse of the true Mielle once again. I hadn't realized how much of her spirit had gone into hiding until I started seeing it come back.
Here are a couple of pics from Chicago:
Throwing a snowball at Dad. Apparently the kid's got quite an arm.
Learning to hula hoop at the Ronald McDonald House (have I mentioned how AMAZING the Ronald McDonald House is?)
Running is still going great (www.mamajog.blogspot.com), and I'm eternally grateful to the ladies who are joining me in this adventure - Kirsten, Stephanie, Nicole, and Claudia - as well as to all the friends, loved ones, friends of friends, loved ones of friends, etc etc who have so generously supported our effort to raise funds for research into better treatments for JDM. I hope that we will continue on this good path straight to permanent remission, but the fact of the matter is that we don't know what the future holds. Mielle and all the other kids with JDM deserve better treatments and a cure.