12/20 Things are Slowly Improving

It's been too long and I apologize for not posting sooner.

Generally speaking things are better. Her blood work seems to be stable and normal (good). Her lesions on her skin are slowly healing (good too!). She's getting stronger and doing more physically (good). Her personality is a real struggle (bad). And she's still taking tons of drugs (bad).

We saw Dr. Vehe a couple weeks ago and she showed improvement which, of course, we were all pleased with, but the disease is still active. Here eyes and fingers are still presenting the classic symptoms (click on the photos for a close up). Look just above the cuticle and see the purplish rash and spidery veins. The eye lids show the classic "Heliotrope" presentation (purple rash and spidery veins). So the disease is beaten down but still grinding away. We talked about a couple changes to her medicine regimen. First, her steroid treatment is now showing more prominently the classic 'steroid look' with the Buddha belly, and the chubby cheeks. This is actually good news because the disease is beaten down to a level where all the steroids are not needed to fight it any longer and now the steroids are doing their work on her body which is a sign that the treatment is working (take this with a grain of salt...it's just my understanding in layman's terms (as I'm quite the 'lay-man') so you Doctor's out there reading this, ya gotta cut me some slack). Dr. Vehe decided to start cutting the steroid dosage by 1/8th.

The Neoral she's been on has really turned her into quite the hairy little girl. Her forehead, cheeks, back, and legs have grown significant amounts of hair. Not so pleasant a look for the girl, but it's temporary (so they say). When that drug is reduced and eliminated over time the hair growth will go back to normal and she should no longer be a candidate for the 'Wolf Girl' opening at the circus.

Since the disease is still crankin' Dr. Vehe talked about moving to a stronger medicine called Rituxin. This is a cancer chemo drug which will hopefully take out some bad cells (some bad 'B' cells) and help her replace them with the good. This will be a big drug step for Josie and Deb is a little concerned about it, but it's better than the Cytoxan, which may be a candidate later on too. We don't yet have the marching orders for the Rituxin but it's looking like that'll be the plan soon.

Josie is slowly getting stronger. She's able to walk easily and can now bend over and place and pick up things off the floor without help. When she wants to she can also get herself up off the floor without help or without using a chair or anything...so things are looking much better on the strength front -- but there's a long way to go yet.

Her little personality is still a real challenge. She has a hair-trigger temper (just like her dad) and extremely unpredictable emotions. At times she's pretty happy and at the drop of a hat (perhaps quite literally) for seemingly no reason she'll be into a crying fit. The reason might be because I got out of my chair on the wrong side or Trip turned off the light when she wanted Mom to...Ugh. But she's getting better on that front too. She at least now can communicate her problem when she wants to as her speech has improved over these past few months, yet so many times when we try to figure out why she's crying she'll just keep on crying and not acknowledge our presence whatsoever.

Josie had a birthday on December 2nd when she turned three. Let's hope she licks this thing here in the next year so she doesn't remember much of it (though I don't think she'll ever forget how awful tasting that Neoral is).