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December 16, 2019

It's hard to know how to start these posts, with regard to how her day went. It was 'fine' as in, no medical emergencies and no visible discomfort. But she's just getting so weak... it doesn't feel right to say things are fine. All her vitals have been good. She's not needed any Tylenol or Morphine all day. She's back to her typical up-all-night, asleep-all-day schedule. They currently have the ultrasound machine in to check her bladder since she hasn't peed as much as they'd like, so they're just taking a look at everything. The swelling in her left hand, from the clot in her arm, looks like it's starting to go down. It's still puffy, but less so. They said it could take several days to just start seeing improvement, so it looks like she's on schedule. Her routine lab work was today, but without the PICC line, they had to stick her. Reed stopped them AGAIN from attempting to take blood with no numbing cream. I never put a sign on the door because she got the line put in... but I guess it's time to get one up. They ended up rescheduling to this evening, and they numbed her as requested, and the stick went fine. But overall she's just getting so weak. Reed told me she hasn't been able to swipe her iPad in days =( She can't get her arm up to it anymore. If he lifts it for her, she can still hold on to the little handle at the bottom of the iPad, and she seems to enjoy doing that, but she has almost no control of her arm anymore. She can squeeze his hand sometimes, but that's about it. She can still weakly kick both legs. And she can still squirm a bit to get a better position. She really favors laying on her right side, so she keeps ending up there regardless of what position they try to prop her in (this is contributing to the puffiness on that side of her face). . I had to look back at her post history to find something, and I realized that just 6 weeks ago, she was still sitting up coloring. She had just started to have the "Julia boat" which was pillows surrounding her for fall protection, and she had just regained the ability to sit unassisted three weeks prior. I continue to do my best to not dwell on how monumentally unfair this all is for her... she just worked so hard, right through intense chemo and constant procedures. The best I can tell myself is neither the chemo nor Mebendazole was expected to work this fast. They both still need several more weeks to even possibly turn the tide of her cancer. So even if they do work, she was expected to get worse before getting better. . Hopefully I can see her tomorrow night. I did go to the doctor today because this is really lingering, and it looks like it turned into a sinus infection, so he gave me an antibiotic and a steroid. He said after 24 hours I should be OK to visit. ~~~~ Picture tonight is a closeup of her balloon hand. Definite improvement. Gabriel also came over to visit for a while =) He tried out his fancy new Gabriel-sized Paw Patrol chair in front of the Christmas tree =) Video in comments: Reed got a short clip today just showing her awake and alert <3 I added to it "Julia's first time in the snow", as I say in the video... it ended up being her only time, up until now, as she entered the hospital before the following winter. She loved it. So, we need this miracle to happen so she can get back outside and play.


YouTube: https://youtu.be/mncaLZ9Ivgk

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********** ~~ 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: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 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 <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!