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February 20, 2020

Another decent day =) Vitals all OK: heart rate 150s, BP 70s/40s.  No fevers.  

I guess the drain to her left pleural effusion (sac of fluid outside her lung) has not been draining anything in a while.  Imaging today showed nothing in that area anymore, so they're discussing whether or not they want to remove that drain.  Obviously major pros are less infection risk and increased comfort.  Cons would be if they remove it and it fills up again, she'd need to have it replaced (which would mean cutting her open again / recovery).  So they want to be super sure it's not needed, but it does appear to be that way.

Her abdominal drain is still functioning at like... 80%.  They want to drain 150ml every two hours, but usually get closer to 120ml, even though there (clearly) seems to be fluid needing to come out.  It just  might be in another 'pocket'.  Anyway, in the interest of getting ahead of this swelling, they are trying to just keep the drain open all the time now and see what happens.  When the drain was working correctly a few weeks ago, leaving it open like this would have just drained her abdomen rapidly and tanked her blood pressure - likely to very dangerous levels.  So they're keeping a close eye on it.

And it looks like she's accumulated a whopping 28ml of urine in her bladder in a 24 hour period.  So she IS still making some, just at a significantly reduced rate.  They check regularly and do a straight cath when needed.


Lots of hand holding today, though still no movement out of her fingers.  Many more "most likely smiles" again though <3 Lots of mouth movement, and Reed thinks some mouth movement in reaction to "can you say dada?", but not completely clear.  (As a reminder, she hasn't responded to a direct request in quite some time, as far as saying something / or, mouthing, in her case.)


I couldn't resist having Julia do a shout out to Emily - the blue haired cancer warrior!  (Reed couldn't roll his eyes hard enough when he saw Julia in a wig <3 <3 The nurses thought she was ADORABLE though!)

Emily was just diagnosed with ALL (Acute Lymphoblastic Leukemia) in December at 15 years old.  Emily's father died suddenly eight years ago, and she is the only child to her mother Holly.  Holly recently graduated LPN school and got a job at a hospital; but that was only a few months before Emily's diagnosis so she immediately stepped aside (though I understand they're holding her position for as long as possible).  

Emily has started treatment, at a hospital three hours away, and is out of school for the rest of the year due to her compromised immune system.

When she was diagnosed, she asked if she would lose her hair.  The doctor said yes.  So she asked if she could dye her hair a crazy color before it all fell out.  The doctor didn't see a problem with that, and he event sent a Resident out to the local Target to get bleach and bright blue dye!  Talk about handling your diagnosis in style <3 

Someone got us in touch, and I said I'd love to get a picture of Julia in a blue wig and share Emily's story.  So Emily cleaned and sanitized one she wore when she was a kid and sent it to Julia!

Her mom just started Emily's page and regular updates.  I wanted to share it so people can follow and give them the same support you've given us <3 Because just having people listen when days are bad, and rejoice when days are good, makes this really crappy situation a whole lot easier.  I've shared a few, and you've all made a MAJOR difference in their lives, when all the new page likes and "we're here" comments start rolling in by the truck load... so let's do it again for this family <3 Your just being involved seriously means everything to people in my position. #NoOneFightsAlone.  

(And if you have the means financially, consider donating to her GoFundMe - I can't even imagine doing this as a single mother!)

Facebook for updates:



Video in comments of me annoying Julia =)

And I realized I never added the last two videos "when I got home" like I said I would, so those links are in those posts now, but they are also here:




*********** ~~ 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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Amy, there is no question Ju-yo smiled at you several times during the dinosaur and on-the-head play. No question at all. Adorable!

Love the blue wig - bet she hated it! Would you mind terribly telling the new mama we are going to support that not everybody has FB and it would be great if she would also use something like this? Otherwise some of us won't be able to follow the story and thus will be of little support.

So glad you put the missing videos up tonight - it's been frustrating not being able to see them, though I do fully understand the recalcitrance of the hospital system.

Continuing to pray for this blessed baby, that she respond…

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