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February 10, 2020

Better day than yesterday. No new emergencies. Her heart rate came down to the 140s last night, which is totally fine. Today it slowly crept back up to the 170s while she was getting fussed with, but it has settled out in the 160s. All improvements over yesterday, but still no one is quite sure what's going on. Still no urine output, but they seem happy with the drain doing the job of her kidneys right now. All tests that have come back are negative (for things like infection, pneumonia, yeast, etc.) All imaging shows everything is the same (as far as effusions, organs, and liquid - nothing about cancer). She's stayed on her increased dose of Morphine today, but has not needed the extra Fentanyl or Ativan. The combo yesterday afternoon knocked her out good and she got an entire night of solid sleep. Today she's been extra tired, but we're hoping that's just exhaustion from the day before and the medicines. She's been alert when awake, definitely finding people with her eye, and lots of mouth movement. 95% sure there were several "dada"'s in there. She's definitely starting to show aggravation with care again - things like bath, teeth cleaning, trach changes, string care, dressing changes, vitals, etc. She was known as quite the sassy one in the PCU... she made it perfectly clear to all the nurses that she doesn't like being fussed with! But over the month of December she quickly became paralyzed, pretty much up to her eyeball. January we didn't see much movement out of her at all - not so much as a mouth wiggle (and really no change in vitals during care). So as much as we don't like seeing her aggravated... it's also nice to see her aggravated. Yesterday she bit down on the mouth swab <3 . It's been just about 4 weeks since her first round of this new long-shot chemo. The round is 5 days of administration, and then 21-28 days to recover. Last we heard, she will start round 2 on Thursday. They would hope to see at least stability on an MRI performed 6-8 weeks after start. Which would suggest, if this is working, we would start (or have started) to see a stop in her steady decline. It's probably too early for much improvement, but she should at least stop getting worse... assuming her organs aren't completely destroyed. ~~~~ No new pic or video today. Hopefully tomorrow if she looks a little better <3 . (And thank you to Julia's wonderful followers for helping moderate the comments on my post yesterday <3) *********** ~~ Julia Adams ~~ ***********   

************ Official Links **************

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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://bit.ly/35ppbSx

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here: juliaadamscancerfund.org/post/november-26-2019 <3 




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!