top of page

January 17, 2020

Julia's had a pretty fine day. Her vitals did their new-normal wonky thing again, where her heart rate goes up and her blood pressure goes down. So they did another Albumin treatment (this helps keep the blood in the blood vessels), and she seemed to respond well. So I think they're just going to do that every 4 hours since this seems to be a consistent issue. But right now, several hours later, her stats are good. BP 140s, oxygen sat solid 100% with the same vent support, ET 40, no current BP read on the monitor, but it's been 90s/50s. The only new thing is she got really cold all of a sudden. Like, a Julia-sicle. Her temp was starting to go down, but stayed within a normal range. They packed her full of blankets and she evened out. There is certainly a theory that the tumor is pressing on the temperature-regulating part of her brain (which could also be producing the fevers), and this could possibly be another sign of that. . I've had some questions lately on whether or not she can see. If I had to bet money, I'd say she can't, at least not very well. And this could be due to many reasons. The most likely being the cancer is affecting that part of the optic nerve, but it could also be the brain bleed making her dizzy. It could be a pain med zombie stare, but I just don't think it is, given the dose. But several people have asked if she can hear, and I'm certain she can. Any time we come back after being away from the bedside for a short while, her eye opens right up when we talk. It also looks in our direction. It just doesn't seem to be able to find us. I feel if something is 'pretty close' to the direction she's already looking, she can adjust. I've tried to get her to follow directions for about a week now - any response to acknowledge she hears and understands, but this paralysis caused by the tumors is making it difficult. Today I got the teeniest tiniest 'dada' twice! I got it on camera the second time =) It's a major effort for her to do it. It's hard to explain, but it's like I could see her brain working trying to control her mouth, and 10 seconds later she was able to do it. But we've watched this girl mouth 'dada' a hundred times a day for the last year, so we know it when we see it <3 ~~~~ I typed this real quick while still here at CHOP, and since she's doing fine right now, the plan is to go to our dinner reservation =) The spa day was WONDERFUL! I did not sleep well, because I haven't slept in a bed in several years, but that was as expected. And... I definitely don't "do cities", so I left 30 minutes early to walk a single block. Just in case. And because I don't really know how far a block is ...Arrived 28 minutes early. But all the treatments were really great and it was such a nice (and unexpected) way to spend my birthday! I did doze off in the salon chair for a second, because I was just so tired, and then I jolted awake thinking a jet was hitting the building. It was the hair dryer. So I got back to the hospital and promptly fell asleep all propped up in the chair. But I kept my makeup nice for dinner tonight =) Thank you to everyone who set this day up <3 <3 . I have the video of her BARELY mouthing 'dada', if I can get it to upload. Picture of Julia this evening, my post-spa day selfie, as requested, and a picture of me and my twin sister <3

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: 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 <3

604 views3 comments

Recent Posts

See All


Julia's hair has grown so much! Even eyebrows and lovely lashes! Her lips look painful, though I know they are receiving treatment.

Amy, you are lovely indeed. So sorry you couldn't sleep, even in a bed! You and sister together are darling - and each had her choice of cake type, we can see. So glad you and your husband had a dinner together - hope you spoke of things other than CHOP and Julia, just things between a husband and wife about whatever. Happy Anniversary!

Did the new chemo begin today as planned? Praying it will amaze everyone with such great effects! Want it to do as the first off-package chemo did.


You look beautiful, we see everyone else in your family all the time, it’s fun to see the woman who has such a fierce love and commitment to her daughter and family, the one who has allowed us into her beautiful daughters life. Hope your evening was a touch relaxing! Prayers for the princess warrior❤️


Jen H
Jen H
Jan 18, 2020

You look fantastic. Hope you had a nice birthday and enjoyed dinner with Reed. Continued prayers for Julia.

bottom of page