November 8, 2019
My dad died to melanoma a year ago today. A year ago tomorrow we were told Julia also had deadly cancer. I have been telling myself that my dad going through what he did, and the stuff I researched for him (and never tried), at least paved the way for saving Julia's life... but now I'm not so sure. We're still trying though. Medically, Julia's doing OK today. Vitals are mostly decent. Heart rate: 145, BP: 124/91. She slept better than usual last night - about 3.5 hours total, and then took a few-hour nap this morning. So total, that's at least 6 hours which is great for her. She's been on her HME most of the day, and she continues to do her cuff-down trials with no issue. Her chemo goes into her stomach (everything else goes directly into her intestines) and so far she hasn't had any issues with vomiting, so she seems to be tolerating that well. She still pukes once a day or so, but it seems to just be mucus related. But in general, the snot-fountain has gotten much better. She had a pretty active day, getting out and into her chair for 2.5 hours! Then right into double therapy with PT/OT which she really enjoyed =) She painted! But it tuckered her out, and she was a grump-monster until she fell asleep. She was sleeping sooo soundly, but then a dozen people came into the room one right after another, like they do, and she woke up. I'm one grumpy-Julia-day away from blockading this door. So, the evening has been a bit blah for her. She swears she's not tired (she is), so she just stares at her iPad like a zombie. She's also still very much protesting clothes and blankets. Blankets used to be her favorite thing ever... now she wants nothing to do with them. She doesn't have a fever, but maybe she feels hot anyway. Brain stem pressure can do weird things. But as far as we can tell, she's totally content being naked baby. Her right eye has remained closed most of the day. She has opened it a few times to look up, but she doesn't seem to really care about it. She prefers it closed. It was probably giving her double vision. Though Reed has opened it several times and said "I see Julia!" and she seems to find that hysterical =) So decent sleep, a good morning, and a blah afternoon for the over-tired Julia. But just now Reed finally convinced her to at least watch her iPad laying down, and she seems much more comfy =) She will be out in 10 minutes. ~~~~ Gabriel is still snotty and coughing, but everything seems like a regular cold now. We're keeping our distance, as we definitely can't risk losing any time with Julia now if we catch his cold. So maybe another few days. He should be nice and healthy by next Friday so we can do something for his birthday <3 Big boy will be turning 2 in a week! . Julia video in comments.
YouTube: https://youtu.be/x6ma-NFoKB8 . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
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