Julia's doing pretty OK today. Vitals remain solid with the increased drain (heart rate 130s/140s, BP 100s/60s). No fever. Dermatology was back in with a group of people to check out her new red/bumpy belly button rash. They swabbed it and sent it for tests. A few quick tests came back negative already. Nothing is growing. They're waiting for a few longer cultures. They started her on a broad spectrum (again) just in case... but they still don't seem to think it's infectious.
She was awake a decent amount like she's been lately. Looking around with her eye, but we're still unsure if she's finding anything. She did appear to rest it on her iPad though. But, it's unknown whether she sees it or just stops where she thinks she hears it. She was making a 'super grump face' during her bath today, which is nice to see again =) But I don't think any of her movement is more pronounced than the last day or two.
Short Julia update.
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So it looks like the daughter of one of my friends (though I'm not sure which one) made a TikTok video of Julia that has gone super viral.
I know your likely next question is "What is TikTok?". It's a social media video-sharing platform that is *extremely* popular with teens. (The app has been downloaded over 1 billion times.) You pretty much share 15-second videos or slideshows of (usually) you... doing stuff. Lip syncing, dancing, being silly, sharing memes, "hashtag challenges", etc. It's set to music, and it's easy to include Instagram-esque filters, text, and emojis. And of course it has all the typical social media functions - liking, commenting, and sharing.
I'm not exactly sure how viewcount works on TikTok, but as of writing this, the 15 second Julia video, posted yesterday, has been viewed over 4 million times, with 1.2 million+ unique reactions, and many "Duets" (people putting their own video beside Julia's - often a reaction to watching the original video). Super cool! However... I'm positive the young lady who made it wasn't prepared for the viral nature of Julia's story =) I see most of the 23,000+ comments are not moderated, and there are lots of questions in there.
Both my sister and I do social media as part of our professions, and we haven't expanded to other platforms simply because it's too much effort to keep up with it. It is seriously a solid part-time job just managing Facebook and her website. Because Julia is a real child, fighting a real battle, with very likely a bad outcome, it is super important that we keep all information surrounding Julia accurate, and the negativity under control.
I have always been OK with people sharing Julia's story assuming several things are true:
1. All information is accurate
2. Interactions are appropriately moderated
3. There is no personal financial gain
4. Contact/follow information ("a link to the source" - me) in some fashion is provided
This TikTok video does a pretty good job. And I'm not at all unhappy that the reality of childhood cancer has been introduced to an entire new demographic - teens. My main concern is that it doesn't seem like the creator is paying much attention to the comments. There are lots of unanswered questions (did she die? what cancer does she have? is this real?). Like usual, the vast majority are super supportive and sweet, but there are always those handful of "let her die" comments that just shouldn't be associated with her story.
I don't have time to add TikTok to my list of managed Julia pages, and I'm not quite prepared to give TikTok, and their army of Chinese-Robo-Callers, my phone number (required to send a TikTok user a personal message). But if any of YOU have TikTok, please feel free to jump in on some of those comments. Nicely. Let them know Julia is indeed a real child, currently living, and her cancer is chordoma. And if they are interested in knowing more, please point them to my Facebook page (facebook.com/amy.largent.50) or her website (https://www.juliaadamscancerfund.org/).
And if anyone knows, or can reach out to this original creator #annahblaire, please have her get in touch with me. As it stands currently, I'm fine with this TikTok staying up, and possibly subsequent Julia TikTok's by this user - maybe she'd be a good 'official Julia TikTok rep'. But I need to know she has a hand on these comments and is willing to put the time in to answer questions and squelch negative responses... because boy is it a commitment. (And it's OK if she's not ready for that responsibility, but in that case, the video needs to come down.)
And thank you to the dozens of people who linked this TikTok to me! This is exactly what I want <3 Just let me know what's out there about Julia so we can make sure everything is on the up-and-up. ... If this girl keeps fighting, I'm going to have to hire a press team.
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I convinced Reed to come spend the afternoon with Gabriel! Gabriel was soooooo happy to see his daddy =) We went to Urban Air. It was super packed, and super loud, with little kids running everywhere. Reed's favorite. But they played together the whole time, mostly running up and down the ramp, if I'm being honest. But they eventually found a trampoline in the corner for little guy to jump on <3 Then we went out to dinner and Gabriel sat on his daddy the whole time. It was so nice for both of them =)
No video tonight. We just left Gabriel and are headed back to see Julia shortly.
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*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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
