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Jan 09, 2019

Updating feels much more... morbid now. Or something. Maybe morbid is the wrong word. Somber. Back in October we had no idea what was going on, and I was sharing just to quickly get info out (to my whopping 68 friends and family). At first we had no idea what we were fighting, and then we thought we had a years-long battle ahead. We never imagined just two months in she would decline so rapidly. And now so many people are invested in her story, sending prayers, and waiting all day long for updates... either the worst news or a glimmer of hope. So I continue to update for all of Julia's new friends, all over the world.

No real medical updates since she's done with tests and procedures. They've changed her pain relief over to a morphine drip, not because she appears to be in any discomfort, but more just to make sure. She's on a concoction of other things as well: a sedative, anti-nausea, blood pressure medication, antibiotic (still finishing up from her infection), and something for constipation. She's disconnected from the vent for now because she's breathing OK on her own. Answering a few specific questions I've been asked: they still feed her of course (through the feeding tube), check her eyes for changes, put her braces on and off her feet, lotion her skin, turn her from side to side, bathe her (of course), brush her hair, brush her teeth, etc.

Honestly she just looks like she's sleeping. It's hard to fully understand that so much devastation is going on inside her brain... she just looks so peaceful. She was awake earlier today for a little. She can only open the one eye, and she has a hard time focusing it. She can't move her body anymore, but we squeeze her hands, and dance her feet around to the beat of her cartoons. She's been sleeping now for hours. I just sit next to her holding her hand and watching her breathe.

I had a rough time today with some paperwork. I think someone may have been a little thoughtless in what was presented to me. We want to donate her tissue to the brain tumor bank because it's so rare and we want to help find a cure, but when they came in to have me sign the consent, they had already filled in "name of deceased" with Julia Adams. I don't even know a word appropriate enough to describe that moment. It was just awful.

Other than that, the care here continues to be really good, but it's very clear they have 100% switched to comfort and quality of life. When we received the bad news on Sunday, they said they would be surprised if she were still here in a week (when asked to be frank). And I believe that remains the expectation. Reed and I continue to give her CBD oil (and some other alternative therapies, for those of you wondering) and hope for some sort of miracle.




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!