Elise at Hollywood and Highland between appointments at CHLA
"Forget what hurt you but never forget what it taught you." - unknown
Elise is about 14 months out from her bone marrow transplant last summer and things are going really well. She is still seeing the Drs more frequently than most kids (monthly), but compared to a year ago it seems like nothing. When she transitions off all the meds it should taper off to once every six months or so, and then once a year.
She's still on a few medications. She's taking acyclovir to dampen the impact of viral infections. There are a few they worry about, but at this point its more caution than necessity. She'll take this until the 18 month point. She's also taking the antibiotic bactrim to prevent pneumocystis pneumonia which causes problems in people who are immunocompromised. Her Dr at CHLA said she's ready to come off the bactrim now and so if NIH confirms that will be one less med (yeah!)
Another med we tried to drop recently was the one she takes for high blood pressure (HBP). HBP is a side effect of one of the immunosupressant sirolimus that she was taking for 12 months. The side effects of the sirolimus linger in the system though so when she discontinued it she had an "event". She was at tennis practice and experienced elevated pulse and difficulty breathing. The coaches had me pick her up and pretty quickly we determined her BP was very elevated so we restarted the med and it came back in line within an hour. She hasn't had an event since, but she's going to continue the HBP med for a while longer.
We also had some fun with joint pain. Elise was complaining of pain in her left knee and so the Drs wanted her seen by an orthopedic specialist. Apparently a potential GVHD complication can lead to joint pain. So we met with them this week. Of course the pain subsided right after the consult was scheduled and xrays were completed. The orthopedic Drs didn't see anything of concern. We'd certainly like that outcome rather than the opposite, but it seems frustrating when you're trying to get the appointments all arranged and done.
The last thing she's dealing with (other than generally thin hair which seems to be growing back in slowly) is some patches of skin on her upper arms that have lost pigment. Each pigmentless patch seems to be proceeded by a light rash. The Dr has been watching it for a while but doesn't think it's GVHD and has referred us to a dermatologist.
I mentioned in my last post that Elise had been cleared to have pets again, so she made sure to pester us incessantly until she got a couple kittens. Becky and Elise found them at the local shelter. "Percy" is a "blue" color with Scottish fold features. "Tris" is a burmese color with a very slight fold to the ears. Even though they share some of the fold features they aren't from the same litter. In any case Elise loves her new kittens and we all get a kick out of watching them romp around the house.
Percy and Tris
Elise started her first year at high school a couple weeks ago. She enrolled in summer school and completed the compulsory Health and Geography classes so that she could take an extra elective, German, during the school year. She's practicing after school with the girls JV tennis team and also practicing before school with the marching banch color guard. She's in Cadet band as an elective, but they only join the Symphonic band for a few performances so she can participate in color guard with no conflict. Needless to say she's very busy and I'm happy to report her stamina is very good - you really wouldn't know she had a BMT 14 months ago.
One of the things we've been doing recently is going throught he house and cleaning out all the old and discontinued medications. After 14 years of dealing with a primary immune disorder there were lots of meds stuffed in cupboards, drawers and various other nooks and cranneys. We learned early on not to discard them because they often came in handy (colitis flare? better have predinsone on hand in a variety of dosages). It's been a real pleasure to get rid of these.
Today my wife cleared out "the last" drawer. I was looking at the meds and noticed it was simple antibiotic that was filled in Florida. It was the from the first serious medical incident Elise had encountered. We were on vacation in Orlando and she had been suffering with something that couldn't be pinpointed. Finally in Orlando her body just could cope any more and she spiked a fever and we took her to the hospital. Turns out it was c.diff (which we thought it was all along but the tests were negative for). Of course they thought it was something worse based on a false-positive test for a blood infection and she was hospitalized for 4 days with IV meds, etc. When they finally decided it was c.diff they had me go to CVS and get $5 worth of metrnidazole. $14K of hospital bills solved with $5 antibiotic they didn't want to give us in the first place - aarrgghhh). But the longer game had started. The c.diff seemed to trigger the first of a few colitis flares that would keep her sick and ravage her colon. Eventually it became clear that she needed either a ileostomy, colostomy or a BMT.
Throwing away that CVS bottle sort of put a long chunk of history behind us. Gladly.
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