November 28, 2019
Happy Thanksgiving =) I realized today that both Gabriel and Julia have been around for 3 Thanksgivings now (Julia was born just after Thanksgiving and Gabriel was born just before the next)... and not once has our family of four been together. The first year, Gabriel was in the NICU. Then Julia was at the hospital, Reed and I had the flu, and Gabriel was with Charlene. This year Reed and Julia were at the hospital, and Gabriel and I were at Charlene's. I'm trying to hold onto hope that next year is our year... but it's getting difficult. Today some of the lab results from her fluid pocket came back and they have found "concerning cells". They won't outright say they are cancer... but, what else could they be, let's be serious. They are sending them for more stains, which can take days-to-weeks, so we won't officially be told for a bit. If there are cancer cells in the fluid near her lungs, I have no idea what that means. Did something break open and they are from the original tumor site? Is there a metastasis somewhere we don't see? Does she have another cancer from treatment? Who knows. Julia's heart rate continues to be high, and is able to be brought down with Tylenol and/or Albumin. The fluid pocket IS filling back up at a measurable rate, so while they are "still discussing options", I believe tomorrow she will be getting another drain put in, as well as a PICC line. They didn't like the risks of a PICC line if they weren't regularly giving her fluids/meds, but with the continual drop in her labs, they now believe they will likely need to give her stuff more often. So a PICC line is now on the table. Of course this is an infection risk, and she is more susceptible while on chemo, but it allows her to get her meds easier and she will no longer get pricked daily for blood work. Another x-ray will be performed tomorrow to make some decisions. Today we believe we're starting to see her vitals be affected by (most likely) the fluid pocket again. Her respiratory rate is starting to creep up. Also, labs show she might be "over-ventilated", which I didn't know what a thing, so they're trying to keep her comfortably weaned, just to keep everything in check. . Other than all that, which honestly is not unexpected at this point, she's had a fine day. She was up all night blowing the Julia Horn to get Reed's attention, then she'd do the "I don't know" hand when he'd ask what she wants... then she'd just go back to her iPad. So she was really just doing it to annoy him I think, which is pretty funny. She's been super content today, mostly on her iPad. She requested lots of cuddles and took a long nap with daddy. She's smiled and waved. So we certainly have her comfort to be thankful for. ~~~~ Pic tonight: Julia blowing a snot bubble... which she usually finds pretty amusing. Then a few pics from Thanksgiving dinner: Joshua pushing Gabriel around on his Paw Patrol car. Gabriel literally pointing a nerf gun into his eye. Gabriel asleep on the couch, worn out from 10 straight hours of Paw Patrol playing, and snoozing right through dinner. Gabriel making it impossible to play a game. And I got two of Kinley while she was reviewing her notes with me. She is three pages into this cancer book, and has three pages of notes. This is the most depressingly-sweet thing ever. I'm going to try to get a video in the comments, but I wanted to get this posted before 11 so people don't freak out =) OK, 11:02.
YouTube: https://youtu.be/Rutkt3l1Q2A . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP 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