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March 4, 2020

Still here.  Still comfortable.  Still sleeping.  

Vitals are all the same: heart rate 170s, BP 81/45.  She's still on the max dose of Epinephrine, so her blood pressure would likely be quite a bit less if not medicated.  They're looking for 48 hours of stability before starting to wean, and we haven't gotten there yet... and probably will never get there, honestly.  (The epi is also likely contributing to her elevated heart rate.)

We've discussed weaning Morphine a bit to see if she becomes more alert... but we've not decided what we want to do.  She's super comfortable.  I don't know if we really want to wake her up if it would mean less pain relief.  (Again, the concern is the Morphine isn't actually leaving her system due to her minimal function.) But the overdose concern with Morphine is really respiratory related, and she's on a vent, so that won't happen.  We're still talking about options.

Wound care comes in to look at her a lot - specifically the bed sore on the back of her head.  She's had it for months, and it was "healing, but slowly" for a while, but lately, it is no longer healing; it's actually getting slightly worse.  Same with the rest of her skin.  Her body is just too focused on other things and healing skin is pretty much its last priority.  So they're keeping everything medicated and covered, with pressure off as much as possible; but at this rate, no one expects progress with healing unless something starts affecting the cancer.  

But she's continued to have a sleepy, comfy day.  She was awake for about 3 minutes once, and seemed to be content.  Maybe 60 seconds of alertness at other points.  She's had her cartoons on and off.  So no new concerns, just holding steady.


A few reminders:


I want to get a few reminders out there since we seem to have a short period of no emergencies.  And these aren't going to feel appropriate on "that" post.  


If you're local and interested, please RSVP to the Blood Drive honoring Julia - West Chester, PA on Friday, April 17th.  (You can select 'interested' rather than fully commit with 'going' -- the event organizers are just trying to get an idea for a head count.)  The vast majority of blood will go directly to CHOP!  Additional info forthcoming, but updates will happen on the event link. Our family will try to be in attendance most of the time: 


A wonderful suggestion was made that allows everyone who has followed Julia's story to be part of her charm bracelet!  So if you would like to have a matching "Julia's Army" charm (from Julia's bracelet which will stay with her forever), the link to purchase one is here.  Proceeds come directly to our family <3:


Not directly related to Julia, but my friends and I are heading up to the Boston area the night after Julia's Blood Drive to attend a Gala for charity - The 6th Annual Sophia's Angel Foundation Gala on Saturday April 18th.  You get to dress up fancy, and there will be food, music, raffles, dancing, and games, all for a great cause.  This Gala is hosted by the wonderful lady who has handled all of the "Julia's Army" fundraisers (and she's done the same for countless other families of sick children).  We are all so excited for a night out.  So while it's not directly related to Julia, we will be there if you'd like to come meet us.  There are tickets and rooms left, but they seem to be going quickly:


I have not decided what I'm going to do with this whole blog thing once Julia passes.  The nightly updates are obviously all for her, which won't be required anymore (and having 4+ hours a night back might be nice...) But, all my relatives, and certainly many of Julia's friends, have also come to love Gabriel and have enjoyed watching him grow up from a little chunk.  I won't be updating here near as often, but I might still continue to post once in a while for anyone wanting to keep up with our family... maybe even some future children.

But what we're definitely going to do is honor Julia's fighting spirit and wonderful little life going forward.  We have ideas.  We've met some cool people we might partner with to do something really awesome every year.  So if you'd like to be kept in the loop about that, please follow Julia's Facebook Page.  We will keep that solely focused on Julia-related updates (events, sharing how we've honored her, maybe sharing this 'legacy album' people have contributed toward, etc.)  So definitely give that page a like. We will also keep her website up in some fashion at the existing domain:

SUMMARY:If you're new and are wondering how Julia got to where she is, a short summary can be found here: 


Video in comments (spoiler alert: she's sleeping).  Also added a cute clip of Gabriel yesterday, and a happy spunky Julia from August <3




*********** ~~ 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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It makes my day to read that if we ever have to be without Julia, we can maybe still know what is going on with everyone else! Every single morning for many, many months I have read Amy‘s blog and feel love towards all of you ! It’s been so kind of you to allow us to share this monumental part of your lives with us. Julia is our hero, but you and the rest of your family are beyond words. I am sure I speak for hundreds when I say that we would be mighty grateful if we could follow along , no matter how casual. Y’all are the best of the best.


Erin McGahuey
Erin McGahuey

Look at all the kisses Julia gave and received because you didn't give up on her. <3 I know that acceptance is not giving up, and I think you know that too. I was moved to tears the other night (most nights lately) by your post about being used to the high stress normal with your Dad's illness and then Julia's and dreading the likely much slower normal ahead. Amy, you and Reed amaze me. Thank you so much for sharing your journey, letting all of us support you in every way. Thank you for sharing your grief, your triumphs.

Still praying from the muddy messy prairie of North Dakota.

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