Julia's had an OK day. After being gone overnight, I personally think her left eye looked strange. It seemed overly, like, open. I pointed it out, and they did a flashlight check, and confirmed that pupil is barely responding. It was getting a little slow last week, and then we thought the shunt might have fixed it because it got better, but now it's slow again. She still seems to be able to move it around and blink OK, it just looks weird. Her right eye has stayed shut all day, as expected, and now that pupil is just constantly staring off to the right. Vitals have been pretty OK. Heart rate and BP slightly elevated from her norm, but we're pretty sure it's from the IV (it's annoying her). She handled chemo just fine last night, so today they did both oral chemos together and she didn't barf. So... success! She immediately barfed after this new chemo a few days ago, but they were helpful it was actually the shunt that caused it. So, that maybe looks accurate. Given the very clear negative progress in her eyes, we are very interested in getting a full treatment plan going ASAP. She just needs to tolerate it. Good steps today. I do feel really bad that without her chemo port, she needs to get stuck every other day for labs =( And with her left arm getting used less (already stroke damaged, and now progressively weaker), they are having less success drawing blood from it. Possibly a circulation issue? So the IV ended up in her right hand today, which required a cast over it so she couldn't yank it out (like she did the IVs on her feet), which meant she couldn't control her iPad! So after much frustration, they got it fixed up so she at least had her pointer finger free. I was not here in time for her morning therapy, but I hear it went well. She had both speech and OT, and she was sitting up in bed playing - like, fully sitting, which she hadn't done yet since her shunt surgery. So that was really nice =) ~~~~ Gabriel and cousins were back down today to celebrate Gabriel's big boy birthday! He's 2! Charlene baked strawberry and chocolate cupcakes and we ordered Pizza. Gabriel opened some presents (got dinosaurs and Paw Patrol!) and then walked around to hand out cupcakes to the nurses <3 He also stood in the doorway to Julia's room and hammed it up: "Hi! Birthday! I'm two! Bye!" Talkative little guy. We finally got the IV out of Julia's hand, and she feels MUCH better. She immediately took a nap - right through the birthday party <3 ~~~~
Pic tonight: As soon as Gabriel opened his toys, he went to share them with his sister <3 You can see him on the far side of the bed. He's on his tip toes trying to give her his Paw Patrol <3 <3 YouTube: https://youtu.be/bAvR0UsgF-U . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3
