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February 28, 2020

She's still hanging on.  She's comfortable. 

She has stabilized a bit today, but she's kind of been up and down the last 24 hours.  Blood pressure as low as 30/teens, heart rate as high as 225.  Several new physical symptoms.  Her blood pressure is currently better (70s/30s), but her heart rate is still 200+. 

Her pain meds have been increased, but even when they were backed off, she is very... out of it.  She's just not the same as she was two days ago.  Her eye doesn't really open much, but she still closes her mouth when someone tries to swab it.   (Edit since writing: her eye has been open and obviously watching cartoons for about 15 minutes this evening).

Her room was a popular place yesterday.  Lots of doctors doing what they could - within the constraints of our new guidelines (no one is going to cut her open to relieve pressure or anything extreme) - but they were seeing if simple things like extra fluid or positional changes could help stabilize her vitals and provide comfort.  Pretty much no life-saving measures are being taken at this point.      

With her neurological changes, the team agrees she's comfortable, and the end could be at any time.  Possibly tonight, possibly a week from now. 

Reed and I have taken turns lying in bed with her.  And we're always holding her hand and talking to her.  She seems to respond, though she's very tired.  


I mentioned yesterday that we all picked out a pair of charms, one for Julia's bracelet, and one for each of us to keep.  I picked out three extra ones for possible future children.  A bear because we always call her Julia Bear.  A blue crystal because blue is her favorite color.  And a peacock feather because she's beautiful - surprisingly even more so after she lost her hair.  So Julia's bracelet has the three charms, and we have four treasure boxes waiting for future kids (three plus Gabriel's with his dinosaur).

I always assumed we'd have four kids.  I have no idea where that number came from, but it's what seemed right.  We were actually getting ready to try for #3 shortly before my dad entered hospice, but obviously that got put on hold with Julia.  Now it's been a year and a half... and time is no longer really on our side.  Reed turns 40 this year; I am 35.  

Having two or three more kids is very unlikely, but that number still stands out.  However, I've had four pregnancies - the first was ectopic, the second was a miscarriage.  So part of me wonders if Gabriel is considered our fourth, and this is as large as our family gets.  (And Charlene might legit steal him.)

I hope more children are in our future.  Reed is the best dad in the world, and his unique form of love is so perfect for his kids.  I want him to have more.  Even more than I want me to have more.  Which is weird to say.  But, with everything headed as it seems to be... who knows what will happen.  Thinking about growing your family certainly has a cloud over it when you've already lost one... especially one who was so perfect and wonderful.

So I just don't know.  But on the chance more arrive some day, we have the charms from their big sister waiting for them.  


Julia's Blood Drive is still on <3 It is Friday April 17th, new location in West Chester, PA.  Julia has gotten so much life-sustaining blood, this is the perfect way to honor her fight.  

Please show your interest here:( 

Any updates will be posted on that event page as we get near.  Our family will be there.  For non-Facebook people, we will update Julia's website with details in the coming days:

No video 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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Erin McGahuey
Erin McGahuey
Feb 29, 2020

I'm praying for Julia's comfort and peace, for each of you to have comfort and peace knowing you have done and are doing everything possible to give Julia every chance to live, to be loved, to give love. Some souls, especially children, are here on earth for too short of a time, yet they, like Julia, bring so much light and love to the world. We don't know the good that is done because of these "suffering souls" until we get to our eternal home in Heaven.

I hope you are able to find comfort, eventually, knowing that somewhere, someday, another child will be helped through what doctors have learned from Julia.

Much love from the rapidly melting prairie of…

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