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November 21, 2019

Julia's much the same as last night. Extremely weak. So a good night's sleep didn't seem to rejuvenate her. She is sleeping really well though - nice deep sleep, to the point they had to bump up the vent settings a few times. She has minimal use of her right arm still. It's propped up to reach the iPad, but she can barely do anything. If her arm slips off the blanket prop, she can't even lift it back up there herself. That's how weak she is. She's good at requesting help though, and so far she doesn't seem too frustrated with her loss of ability. She can still communicate yes and no, and has requested several specific cartoons today (Paw Patrol and Peppa). We've gotten a few O faces and at least three smile attempts. Definitely not big beaming smiles like she could do two months ago, but little lopsided quarter-smiles. Medically, vitals remain stable. She's tolerating meds fine. Her sodium is rising nicely with treatment - 137 at last test. She gets pricked twice a day. As soon as they see stable numbers they will test less. I confirmed with the nurse that it is very obvious in her chart for the NURSES to apply numbing cream 20 minutes before blood people come in. She is currently getting labs Monday and Thursday, so the nurse came in this morning and numbed both hands. It works really well for her. . I am so impatient to see... something. Some sort of evidence this treatment is working, but nothing has been running long enough to be effective. There are just so many different treatment paths to go (all NOT expected to work...) but we need to pick ones that complement each other, and just give them time to do something. Time is just not something Julia has a lot of if the treatment is not effective. It's a very stressful position to be in as a parent. Especially as a parent with no qualifications to be determining treatment direction. My starting point is "do something", and beyond that, with this cancer, it's just guesswork. I keep telling myself is we've been here before - we've been in a worse situation before - and she made a come back. I don't know how much I really believe that will happen... but we've seen it happen once before, so we at least know it's possible. ~~~~ And with Julia's recent decline, of course all our time is devoted to her. I had gotten in the routine of having Gabriel at home with me on the weekends, and Reed would come visit for a night, but that stopped around Halloween. So Gabriel has been staying with Aunt Charlene (Reed's brother's family) full time again. Since Gabriel has been living there for over a year, he's gotten pretty close to her parents over FaceTime... especially her dad. They are visiting for two weeks, and since "grandpap" arrived from Texas, he has had a completely inseparable little buddy <3 He's the perfect stand-in for my dad =)

. And in honor of my dad (and his love for space), I wanted to let people know about the meteor shower tonight (Thursday November 21), if you happen to be in a viewable area with no clouds. We're covered in clouds here. Boo.

-- Those living in South America, eastern North America, Western Europe and northwestern Africa will have the best view.

-- That outburst is expected to occur at 11:50 p.m. EST (4:50 GMT) tonight, but observers should start watching for potential meteors starting at about 11:25 p.m. EST (4:50 GMT) "There is a good chance to observe a short-lived outburst," the experts wrote. "Anyone who is going to try to observe should not be late at all."

-- This year, the comet's trail is close enough to create a meteor shower similar to the one in 1995, Jenniskens and Lyytinen wrote. If they're right, skywatchers may be able to glimpse from 100 to more than 1,000 meteors total in tonight's sky. The peak of the outburst will likely last for only about 15 minutes but could potentially last up to 40 minutes. So if you happen to be awake, and get to see it, think of my dad <3 The last space-y thing he saw was the 2017 solar eclipse. He drove many states away to be in the path of totality and he thought it was the coolest thing ever. So he would have enjoyed tonight. ~~~~ Video in comments. (Hospital internet and YouTube still not cooperating - video is on Facebook.) . . .

********** ~~ 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 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




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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!