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March 13, 2020

She's comfortable, but we're starting to see some more negative changes in her vitals.

The abdominal drain has continued to let out about 20ml an hour on average.  Her blood pressure has been lower today, which is not unexpected with the drain working.  The lowest I know about was 40/19.  Most of the day it's been 40s/30s.  Most recent reading was 58/23.  She's still on the full dose of Epineprhine, and she gets her Albumin treatments, so they have limited options to assist.  

She also had consistent lower temps today, which is not her norm.  She usually runs pretty hot.  Earlier today it was 96.8 (36) so they covered her up with a bunch of blankets and it's slowly coming back up.

In addition, she is requiring a considerable amount of oxygen from the vent.  "Room air" is considered 21% oxygen - that is what you and I breathe.  For the last several weeks I've seen her vent settings hover between 30-35%.  If her oxygen saturation is nice and high, 99-100%, they will bump down the assistance.  If it is low, 89-90%, they will bump up the assistance.  So going off her saturation levels, they've had to bump it to 40%, then 50%, then 55%, and right now it's at 60% with her still only satting about 89%.  It's a considerable negative change in just a few hours.  So far no imaging of her lungs, but I assume that's coming tonight.

So, definitely some changes.  None of them in the right direction.  She's been very tired today, but she can open her eye and she appears comfortable.  


Two unrelated things:

I wanted to thank everyone for ordering a "Julia's Army" charm that matches the one on her bracelet <3 The amazing lady who makes these by hand is just a bit behind due to the awesome response!  But she will definitely get them all to you soon =) 

Also, two days ago I posted about a star being named after Julia "Warrior Princess Julia".  In the comments, several people said they were trying to find, at least the area it's in, and mentioned they're not very good with stars.  So I wanted to let you know about astronomy apps!  There are many free ones, and they are super easy to use.  You download it, open it, and point your phone at the sky.  That's literally it.  And then it shows you all kinds of cool things: it outlines constellations, names stars, shows you where the moon is, even if you can't see it, etc.  It's honestly cool enough that's worth everyone checking out.  I'm not an expert in the apps, but the one I have on my phone is SkyView Lite, and I believe it's both iPhone and Android.  So consider checking that out and looking for her star <3 (My dad would approve of this message... he was a total space nerd.)


No new pic. I broke my mouse last night and attempted to use Photoshop for about 15 seconds with the laptop trackpad before I got frustrated.  So I can't edit anything, and this one was ready to go <3 This is the artist, Phillip's, official coloring of Julia's 2020 warrior page <3 

I do have a video in the comments.  A short clip of Gabriel playing Minecraft with his daddy (he's controlling the movement stick, and figured it out enough to chase around the kitties.  Pretty good for 2!)  

And then there's a clip that I've never shared before.  This was her last night in the PCU.  You can see her right eye is closed here, which happened over the course of 3 weeks or so, and you can see she's pretty wobbly.  Well, she had JUST started sitting up on her own again, but she was extra wobbly.  And obviously weak in her right arm, which was new.  But she was suuuper snuggly and just wanted to get hugs back and forth.  

Shortly after this video was taken, she got really strange (eyes looked weird, she was falling over in unnatural ways, obviously extremely weak).  Of course we thought that was the end, and with all the emergencies, I never got around to sharing this sweet video.  It turned out to be a completely unrelated shunt malfunction, but her weirdness this day is what got her moved back to the PICU.  She never sat up again.  But look at this girl... aggressive cancer clearly affecting her body AND a shunt malfunction... and all she wants to so is get hugs and watch cartoons <3 


Given the uncertain nature of today, I will give any important updates here on the post (and copied to comments) if they come up tonight.




*********** ~~ Julia Adams ~~ ***********   

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


Julia's official pages: 


Facebook: Julia's Fight Against Rare Cancer - Fund


Julia's official fundraisers: 

T-shirts: |


Car Magnet:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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:

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