July 19, 2019
[Upon proofreading, I see I talk about vomit in pretty much every paragraph... apologies. One of those days.]
Day 4 of 5 for chemo. Her vitals are all great, but she's been understandably exhausted. Starting to throw up more again, but she takes it in stride... probably because she's 2 and doesn't know differently. The further we get away from "she's dying", the harder it is to watch her little body go through this every cycle. I so hope she gets a loooong break (forever would be fantastic) after round 12 (she's almost done round 9 right now). But we just don't know... Her 12 rounds of treatment was based on only TWO successful case studies on chemo vs her cancer. One child did 12 rounds, one did 17. So... who knows.
But despite the vomiting and sleeping, she's really had a good day! Her cycle today has been very deep sleep for a few hours, then wakes up agitated, pukes, gets some form of a bath / wipe-down, and then is happy Julia until she gets tired! No therapy today, but she played with her Peppa drum set and the collection of random toys she now stores inside the drum set. She's getting really good at actually beating on the drum, and she threw all her toys across the room at least once... not in anger, so I guess... good PT? And she even did a pretty good job fighting off one of the assistants during vital checks.... showed him who not to mess with.
But her main focus is her iPad. I'm so happy she has the iPad and that fancy holder that wheels all over and can be positioned at any angle (side bar: these are apparently a SUPER hot commodity and they say there are never enough to go around... so if you're looking to donate something to your local children's hospital... you'd make some kid stuck in a halo neck brace very happy <3 ] Anyway, she's so focused on it that she even continued to flip the channels WHILE puking. Like - active vomit coming out of mouth, and she's switching from Peppa to Paw Patrol. Talk about toddler priorities.
And Reed said earlier after a puke, they had to change the padding under her trach ties. So they positioned the iPad directly over her head to encourage her to look up to free up her neck. So she was contently fiddling with the iPad while they changed things. There was NO WAY she could see the wall-mounted TV with the iPad right over her face, so Reed turned it off.... because she's clearly not watching it.
WELL. Little miss Sassy-Pants shoved the iPad right out of the way, pointed at the TV, pointed at Daddy, and did the no finger!!
So that was like... the most adorable thing ever. This girl's got opinions!
I didn't get a video today, but I have a super special one in the comments <3 This is just a day before her initial surgery; and actually, now that I'm realizing it, it's the last time anyone heard her talk. So it's early November, she's 23 months, and it's a short clip of her saying all her words. She didn't speak much, didn't enunciate well, and was SO soft-spoken. But OMG I love her sweet gentle precious voice!
. ********** ~~ 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 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
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. You can find them all on my Facebook page or Julia's website <3