Beanie's Blog: Slivers of hope

It's been a complete whirlwind. I'm always surprised at how fast things became manageable and bearable, our new normal. Almost 2.5 years ago I sat in a room at the hospital getting trained to give Selene shots and I cried through the whole thing. Within two weeks it was nothing and I was doing it myself. 5 days ago I thought the Imatnib would ruin our lives. How could we wrestle her into this every day? By yesterday I did it while Dan was at work and she took it all smiles, ok and with a few grimaces. At least she didn't kick me. Today it took just 10 minutes and she was actually laughing about other things during it. This concerns me that it's just prepping her to win every beer bong and shot race at Penn State in 16 years.

I was joking with the doctors about how awful it is and they told me that older kids just swallow the pills. That makes so much sense! I couldn't fathom while pills had to be dissolved. They said we could try teaching her to swallow pills using mini m&ms. But considering she can't bite the pill (otherwise it will burn her esophagus) I'm hesitant to trust her with that. Ellen also said "I usually taste all the meds but couldn't because this one is chemotherapy." Did NOT put that together when I tasted it... ;-)

Overall, other than the two hours of waiting, it was a good appointment. I had noticed an improvement in her hands and joints and so did Dr. Olson. Her blood counts responded how they'd expect them to with the steroids. Next week we are going to stop by the lab in KOP before therapy to draw blood. If the markers that show them a bit into how GVHD is reacting come down we can wean back the steroids and just remain on the Imatnib.

After every dose of Imatnib yesterday and today (I do 5mls in a syringe to give the 100ml of medicine) she would hold her hands up and say "look how much I can open my hands now!" :-)

Thanks to a friend's suggestion we made her a star chart and she crosses off boxes every time she takes a med or goes to an appointment with a good attitude. After 30 she'll get a prize, though at this rate she thinks checking the boxes is a thrill so I'll let her go with that until it doesn't work any more.

We had OT on Monday and Wednesday. It was a bit rough trying to get everyone on the same page and realizing that Selene didn't fall into the category of normal Tenosynovitis treatment, but they're all slowly getting on board. As of this evening I finally got 3 days of OT scheduled but they are late in the day and Selene falls asleep! Blerg! When school starts this also means I'll pick her up at 12:15, run home to eat lunch, then off to a late therapy at 3. Don't even ask how I'm handling the thought of Kalina's nap schedule. We also finally have a PT eval on Thursday to get those appointments added in.

She was apprehensive on Monday and almost refused to participate. Thankfully OT is basically crafts and games and playtime and she eventually warmed up. On the way out she even declared "I thought that was going to be bad, but I like playing!" Today was a little better though I still can't leave. Hopefully in the next few visits I'll be able to let her focus with Ms. Erin instead of sitting in my lap for everything (Erin called it her safe space, which is sort of sweet and sort of annoying at the same time).

Changing topics, I'm missing my other crazy girls! Apparently yesterday Kalina ran into the ocean over and over again laughing as the waves crashed into her. I wish so badly I had seen it! Having one kid has been interesting. First, Selene plays independently much more when the other girls are here, even if she's not interacting with them. She's really been needy of my attention for play which is unlike her. I also have learned that Selene on steroids is awful. She's always hungry and has mood swings. She also makes more of a mess than I gave her credit for, no more blaming it on Kalina!

We are going to call a few times tomorrow to see if we can grab any cancellations because at this point there are no openings for spots tomorrow or Friday. They really need to hire more therapists! And build a CHOP specialty center in Lansdale...

Anyway, there's your boring update! I'm seeing glimpses of light shinning through what seemed like solidly closed doors. Thank you for all of the prayers and thoughts!