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January 7, 2020

Updated: Jan 8, 2020

Things are about the same as yesterday. Vitals are all decent. Morphine has been going around the clock "just in case", though the consensus is she's comfortable (or, simply not aware of the discomfort). As far as Reed and I can tell, we agree. Lots of people had suggestions on possible causes of the torso swelling. I've brought them all up to the various doctors (who continue to be super receptive of "Someone on Facebook said...". Seriously. At least to my face. Who knows what they say when they leave the room =) ) But it sounds like they're leaning toward a mixture of organ swelling and fluid buildup. They are continuing with Albumin treatments (this is a thick protein that helps keep fluid in the vessels), as well as Lasix to pull off excess. They are also working with nutrition to condense her formula so she can get the same vitamins/minerals without all the excess fluid. The goal is to just try to get a handle on the swelling without doing anything crazy. The doctor today assured me that her stomach will not 'explode'. She got wheeled down for an MRI around 6:00. This was her typical 3-month treatment scan. The scan was several hours long, and we usually get results in 24-48 hours. But we already got preliminary results, so you know... news. We don't have word on the cancer yet, but they are able to see her brain was/is bleeding. The team was a bit surprised to find the hemorrhage, as her vitals have not indicated a brain bleed. However, she already has a functional shunt, so the pressure that most brain bleeds eventually cause just didn't happen, as the intervention was already in place. (And the pressure, not the bleeding, is what causes the symptoms. I think. Don't quote me on that.) No word yet on size of bleeding, whether it's currently active, what was affected, etc. It's expected to be due to tumor growth (bleeding is a common complication from brain tumors). But initial theories are this brain bleed may have coincided with her downward turn these last two weeks. My question is... could this fluid from her brain bleed - which is being pumped through her shunt and into her abdomen - be the mystery cause of the swelling? Could the redness all around her belly button be free-floating blood on the other side of the stretched-thin skin? Could this brain bleed be the cause of her lack of physical ability, rather than just cancer growth? Anyway, no real answers yet. We have a meeting with the neuro-oncology team tomorrow to discuss the rest of the MRI. . Oh, and Child Life stopped by and mentioned Julia got a Code Blue the other day when her trach clogged. I didn't know the alarm went off and everything. If you've never experienced a code in the hospital, the lights start flashing and a loud voice comes over the loud speaker and repeats "Code Blue 7 West 47 (or wherever)". And then it's a herd of people in scrubs booking it down the hall. I mean, SUPER awesome that this response happens... but not so awesome when it's to your room. I would have had a heart attack. They would have been wheeling me across the street to Penn. But Julia's Child Life friend recognized that it was Julia's room, so she went in to check on her after things settled down. She said she looked very comfortable <3 She also said she got around to printing some pictures off her camera. If the parents aren't available for PT, she is able to stand in. This must have been a PT session while Reed was at lunch, because he never saw the basketball hoop. But look at our baby get that basket! She said Julia also used her feet and kicked the ball into the soccer net below <3 I just had to share these adorable pix, so they're included tonight. ~~~~ Yesterday I asked for people to share how watching Julia's fight has changed their lives... I have THOUSANDS of responses. Literally thousands. I've only captured a fraction of them, but I will get them all. Every one of these is making it into her album. (You can read yesterday's post if you don't know what I'm talking about - please message me to add anything!) <3 <3 This is going to be a treasured book for our family and friends. ~~~~ So Child Life's PT pictures included tonight, and 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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3 kommentarer

Jen H
Jen H
08. jan. 2020

I love the quilt!!! So much love went into it. What amzaing talent!!! I'm so glad they found a source of what could be making Julia so tired. A brain bleed. I echo the prayers said above for the bleed to stop medically or miraculously!!!

Synes godt om

Laura J.
Laura J.
08. jan. 2020

Mymozart - This is Amy's sister. We do see the comments on here. I get an email notification whenever one is made. We don't get too many here, but we do see them 😊Most folks comment on Facebook or email us. Thank you for your prayers and support ❤️

Synes godt om

Would someone who reads these comments and has a FB account please alert Amy that people have begun commenting here? She's been doing these updates a very long time with no comments in this area, so may not be aware of them, and Jen and I seriously want her to see our requests, that she put out a plea for renewed prayers. Thank you!

What an incredibly beautiful quilt in tonight's pictures. So much love in every stitch!

Love the O-face and two smiles playing basketball! That baby has the ability to fight so hard! She may very well be fighting right now and that's why she appears so tired - the battle goes on, helping the new chemo to…

Synes godt om
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