Saturday, June 23, 2007

6/23 More Drugs On Board

Josie saw Dr. Vehe on Thursday for her weekly visit and he was generally happy with her appearance. He continues to be impressed with her strength and mobility, which keeps on coming. He thought her skin generally looked better but the hot spots were a bit of a concern. Her finger nail-fold capillaries are flaring up just a little bit and the marks on her shoulder and elbows are a little redder, as is the redness in her face. His general feeling was that “…we’re not doing things quite right…but on the other hand we’re not doing things quite wrong either…” He decided to give Remicade another whirl.

Remicade is a heavy-duty drug that blocks the action of a substance in the body called tumor necrosis factor (TNF). Blocking TNF can reduce the inflammation and immune responses caused by too much TNF in the body. So it’s a big-league immunosuppressant, and that means she’ll be at some serious risk for infection due to her beaten-down immune system. Remicade is also the golden-treatment drug for Crohn’s Disease, which is a chronic and serious inflammatory disease of the gastrointestinal (GI) tract. So being treated with Remicade will not only help Josie’s skin (that’s the plan) but it’ll also give bonus help any involvement of her GI tract too, which of course she has a history of.

So yesterday Josie went in for her Remicade infusion in the Cancer Center at the University Hospital. She was there for a couple hours during the infusion and then that was the end of it. This morning her skin looked better. The skin involvement on the hot spots seemed better…that’s of course before she headed out in the heat of the day. It’s just mid-day and just being outside in the shade has brought up some more splotches. It’s pretty clear this girl is some kind of Vampire when it comes to the sun.

Josie’s mobility seems unstoppable as of late. She wants to walk and stand and get around more than ever, and we have to keep a close eye on her so she doesn’t get wiped out by a dog or other kid scrambling through the house. Her heels are becoming loser and her confidence is getting stronger (which might become a problem). She’s still trending in the right direction though.


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