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February 5, 2020

Another stable day. Heart rate is a bit higher (160s), but BP has been great all day at ~90s/50s, and all other vitals are unchanged. She's still pretty much not peeing, but the poor-mans-dialysis might be doing an OK job. Her nutrition is fully through IV right now, and she's doing just fine on that. Her oncologist stopped by to take a look at everything. We're semi-interested to know if Julia can see or not. We agree she can react to sound, and she appears to try to find things... but we're not sure if she's just looking toward the sound, or actually at something. I want to say it looks like she actually watches her cartoons when they're in front of her, like, her eye flicks around like you'd expect. But then other times, it doesn't seem like she sees things near her face at all. Sometimes if I wave my hand right in front of her open eye I get no reaction (but one possibility is her eye gets 'stuck open' while she sleeps, and she's actually sleeping during those times... not sure). The ophthalmologist could stop by and do all kinds of tests, but we agreed there'd really be no point. It would purely be for our information - we wouldn't change anything we're doing (and couldn't do anything if she was having vision problems anyway). So we don't want to subject her to pokes and prods and lights. If Julia's still going strong in another month or two, we might be more interested in her official eyesight status if it's still in question. She did a bit of mouth movement today, though nothing obvious. And I did not get any finger twitches while holding her hand today. But she was 'awake' for a solid 45 minutes during Bubble Guppies =) The oncologist was happy to hear about the longer periods of alertness, as a few weeks ago it was like, 30 seconds total during the day. But again... cancer shrinking? Or just fluid being pulled off, or possibly brain bleed being absorbed. There are just too many unknowns. . A follow-up MRI is usually done 2-3 months after the start of new chemo. This chemo started January 16th, so we're not even a month in. I assume March or April for the next MRI. She should be due to start her next round in a week or so. It's super early to see any visible response, though not entirely impossible. People can respond quickly when the right medicine is found. But honestly, we'd want to SEE improvement in her presentation if we'd expect improvement on an MRI (like, if the MRI showed major improvement but she was still in this condition, that would not be fantastic). So we'd hope for improvement before the MRI to suggest the chemo is working. ~~~~ I randomly scrolled past a post about the upcoming annual Sophia's Angels Foundation Gala in Boston. This is the amazing woman who has done the majority of Julia's fundraisers - all her beautiful jewelry and Christmas ornaments. The Gala looks like a lot of fun and it's for a great cause, so I asked Charlene if she wants to take an overnight trip, and she does... so I guess we're going! There are a limited supply of tickets left, so if you're in the area, and want to go (and meet us), buy them soon =) The Gala is Saturday, April 18th, from 6-11pm at the Boston Marriott Newton, just outside of Boston, MA. $100 admission includes dinner and dessert, DJ, dancing, and photo booth. There will be raffles, and a silent auction, and I think Jarvis Green from the Patriots will be in attendance. All proceeds go directly to Sophia's Angels Foundation. Cathy formed this foundation to honor the kind and loving memory of her mother, who passed away from breast cancer. Their mission is to inspire and practice kindness in ways both big and small, by helping others in need. Such as: --- Raising huge sums (50k!) to purchase a handicap van for a family --- Giving socks, gloves, jackets and blankets to the homeless --- Paying off entire layaway accounts at Toys R Us for the holidays --- And creating fundraisers for families with sick kids, just like mine <3 (that's how we met) Charlene and I are so excited for a night away in April, and we'd love to meet you if you're able to attend <3 Purchase: ~~~~

Video in comments <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

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Seemed to me, Amy, that she was smiling! When you were asking her about the Bubble People, she seemed to smile in response, and perhaps it was difficult to hold the lips in the smile position; thus she expressed the smile multiple times.

She seems to be on her way back, Amy. Of course not being there with you, with her, with the doctors, perhaps I am wrong or, seeing from afar I see clearly. She seems to be coming back much like she did before! Praying so, of course! God bless that baby and her determination! She has so much to live for!

P.S. Potty training at age four should be a breeze! Should only take one explanation of…

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