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January 21, 2020

Julia's had a pretty good day. No new concerns (yay). Vitals are fine. BP is sitting on the low side, but still OK (80s/40s). No temp in several days. Labs show her elevated white cells have come down to almost half the previous level over the past few days, suggesting something is responding to one of the antibiotics she's on (which coincides with no fever). She's a tad low on sodium and calcium so they are giving her some as supplements. Her belly rash is slightly larger, but her belly in general is slightly less tight, though I think it's the same size. She's been pretty sleepy today. But she's had some 'absolute for-sure' eye contact. She can't hold it very long, but she can certainly find people. Well, daddy. She finds daddy. Mommy gets an eye-crack, but I don't get the full effort of moving her eyeball. ~~~~ Reed mentioned he's wanted to show some of the nurses Julia's amazing, against-all-odds progress over the summer. We're getting several who had her a year ago on the other side of the PICU, so they saw her back then (in coma) and again right now (mostly unconscious). Reed wanted to be able to show them that she came out of coma and was doing really well for a while, so he asked for a good video. I scrolled back to Sept/Oct to find a link for him, and I came across this video of Julia. Given where we are now, it's almost like this honeymoon period of 'she's going to beat this' didn't really happen, but watching this video I was just overcome with pride in her. This little girl was a ONE YEAR OLD when they cut into her brain to remove the tumor, and then fused her spine together. Talking with adults who have had a similar fusion, apparently your head feels like "a bowling ball on a spaghetti string neck". It's a very difficult and painful recovery. But before even getting out of her halo/neck brace, Julia had a bonus stroke, and then went into coma. She was either sedated or unconscious for several months, and then when she woke up, she was getting intense chemo pumped into her veins. She was weak, and nauseous, and likely experiencing headaches and all kinds of pain. She had no control over her body. She went to sleep being about to talk in her gobbledygook, and 'woke up' several months later with a trach preventing communication. We couldn't talk her through it. We couldn't explain what was happening. We couldn't give her instructions to speed her recovery. She was just a baby... she didn't understand. And yet... here is this video of this beautiful bald little two year old, pointing with excitement at her iPad. She learned to communicate with facial expressions and pointing. She learned to vocalize around the trach. Through her own determination, she recovered enough ability in her stroke-damaged left arm to support herself and clap. With her minimal access to PT, and after a year of bed rest, spinal fusion, and exhausting PT, (and, you know, cancer in her brain), she learned to SIT UP on her own! Just watch the video and look at her try. Most adults don't try half this hard. At anything. And they certainly can't find happiness among such hardship. If I had to go through her chemo, I'd be having a pity party and feeling sorry for myself every day. I'd be bitter at the world. I certainly wouldn't find joy in a silly TV show. I wouldn't go above and beyond scheduled PT in order to get myself up and moving. Julia doesn't know any different. Her life is a hospital room. Getting stuck with needles every day, getting man-handled to turn over, having to poop laying down, seeing people with masks come in to prod you, getting strapped down and slid into loud machines... is her normal. She has no idea what life she's missing outside of CHOP. She has no idea what three years old are "supposed to do". But because she is blissfully naive, she doesn't let any of that stop her. She just shrugs off the newest bodily inconvenience and figures out a way to watch her Peppa. This is why we keep fighting even when a positive outcome is all but impossible. Julia WANTS to live. If we give her an ounce of breathing ability and the semi-use of her right arm, she happily scrolls through Peppa asking for daddy cuddles, content as can be. Videos of her from just a few months ago make me so happy at what a fighter we have, but then so sad at the heartbreaking injustice of childhood cancer. She had just learned to sit up, against all odds, and less than three weeks later we were back in the PICU, where she quickly lost all the ability she worked so hard to regain. Lots of people ask me how I 'stay so strong'. The truth is I don't think about it. I don't let my mind go down the road of how unfair this is to her. I am comfortable in my 21-month 'survival mode' phase. I know it will all hit me someday... but that day can't be today. So, I look at videos like this and quickly brush aside the onslaught of depressing thoughts, and just focus on how proud I am of her laughing and pointing, and her toddler-frustration when she can't quite sit up all by herself <3 Things aren't great right now, and there is an overwhelming likelihood that she doesn't come through this. But if she has a miraculous response to the new chemo, I'm so excited to see how quickly she busts out of this hospital. ~~~~ Video in comments.

*********** ~~ 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

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You go, Amy!!! She only needs the tools - she will do the rest! They just need to give her the right tools. What an incredibly determined young lady Miss Julia is! Is there another tool waiting in the wings? Surely there must be. Do suggestions from successful use keep coming in? Any possibilities? This baby really wants to conquer, and has done so much already - no wonder CHOP keeps doing everything possible - she has impressed everyone, no doubt of it.

Gabriel is adorable with his new spelling abilities! He is a darling child, bound to be a handful. Love his pushing furniture around to help himself to things. Lots of brain power there!

Wish none of you…

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