November 11, 2019
Around 12:30 last night I did another update to my Facebook post (GoFundMe / Website followers didn't get the update). Now, after the fact, I really wish I had gotten a video of her behavior. She was like jelly. Even her super wobbly PT video several weeks ago was not even close to how she was acting. She might as well have been a Julia-shaped doll filled with sand. Within ~45 minutes from waking up from her nap, she went from "mostly normal" to totally unable to support herself or even lift her right arm. Her behavior was so unusual and so bizarre, I was sure she was experiencing fatal pressure on her brain stem or something was bleeding. I didn't want videos of what might have been her final moments, so I didn't take any. But now I wish I had them for comparison. So after Julia physically declined over several hours, and then remained totally out of it for another few hours, she started to wake up. Even watching her wake up was strange. She'd open her good eye (which was already unexpected to see given her state), and she's focus on us, but a second later she was asleep again. It took 10-20 minutes of what appeared to be considerable effort for her to wake up. But once awake, with another 30 minutes to fully come around, she was mostly normal. Obviously, "normal" is our new state, with her right eye shut, overall stiffness, and fewer smiles. And to answer some questions from last night: no new medications have been started (so it wasn't a reaction), and confirming her right eye has always been her 'bad' eye, so nothing different there... other than it's bad again. But she seemed to mostly come out of... whatever happened. I guess some other people looked at the scans and confirmed there was absolutely nothing on them: no pressure, no bleeding, no new stroke. The CT scan doesn't do a very good job seeing the tumor, so no comment as to whether the tumor has continued to grow (it likely has). She slept pretty well again last night - 4 hours, and then took a few good naps today. She started the day on her HME, and did all THREE therapies while on the HME. She was cooperative and engaged during therapy. No smiles, but she seemed to be content. She did a great job, and even when she's not full of smiles, she doesn't want the sessions to be over. She seems to really like the engagement and change of scenery (can you blame her?). She spent some time in her chair, and flipped through her iPad. In general, she seems a bit weaker. Her right arm isn't quite as quick as it was a few weeks ago, but nothing like last night. You can see in the PT videos that she definitely still has control of it. While napping after her big morning, she did start to de-sat again, so she went back on her vent. Not high settings, just enough to take some of the effort away which allows her to rest more comfortably. This is new as well (being unable to keep her vitals up while napping during the day. But no one is surprised). So even though there have not been many smiles, she seems to be very content and comfortable. No sign that she's in pain, and she hasn't been irritable or agitated. Her itching nonstop has really slowed down. She hasn't needed Tylenol or Motrin. ~~~~ No one is quite sure what happened last night. but our oncologist explained that sometimes kids with neurological conditions (like a rapidly growing tumors on the brain stem), can do weird things like this. She explained that her... oh boy, totally forgot the fancy words... neurons and nerves and wiring and all that stuff, is constantly running hot - not temp wise, but energy wise. The brain is always working to 'fix itself' against something that's super invasive and unexpected. Because of this, sometimes they hit a period of total neurological exhaustion, and their body just kind of shuts down. Not in the "end of life" sense, but in the "that's enough, I need to recharge" sense. So who knows if this is what happened, but the neuro-oncology team is not concerned nor surprised, given the clean CT scan. This unusual 'brain stuff' seems to be par for the course at this stage. Treatment wise, they're going to start her new oral chemo tomorrow. They have all the initial labs they need. They are also going to start her new off-label medicine (Mebendazole) as soon as it arrives - it's not something that's kept in stock at CHOP. So hopefully in a day or two that will start. I don't know if any guidelines exist for attempting to treat chordoma with this medication, so they're going to start her off low, see how she does, and then bump her up every day or two until the max dose for her weight is hit. The medication is well tolerated, and really the only concern is her liver. Both chemo drugs and Mebendazole can tax the liver, so they're going to do labs every few days and make sure everything is running smoothly. Additional steps to the "complementary off-label medicine" plan are still being looked into. ~~~~ Given where we thought we were last night... today has been just fine. I've been fighting a massive headache, but it's manageable. I think my body is running out of resources to handle this extreme stress. Headache and exhaustion happen way quicker than they did a year ago.
"Julia's Army" Christmas Ornament fundraiser: https://www.etsy.com/listing/734174694/julias-army-christmas-tree-ornament And I'm still having a hard time getting caught up on messages. It's easier to put a little more info here than answer messages individually right now. The "birthday bash" for the 4 kids is still the plan - November 27th. My sister helps read through my messages and gives me an overview of anything important, she said a few people have asked for more specific ideas for the kids. Julia - She's received so much that I really can't think of anything, maybe some new coloring supplies. She goes through hers pretty quick... especially when she chucks the marker cap and no one can find it.Gabriel - Seriously, all this little boy wants is Paw Patrol and dinosaurs. He has pretty much none of either. I haven't had time to shop for him in... well. a year. I think Aunt Charlene caved and bought him a small stuffed Marshall today at Walmart because he was giving it a death squeeze. But other than a Paw Patrol bedding set at Aunt Charlene's, he doesn't have anything.Joshua - Turning 9. "Nerf guns and I like video games" is what we get from him. Shrug. He's 9... I guess that's what we can expect.Kinley - Turning the big 13, FINALLY came through with a list! She has been adamant about not celebrating her birthday because she feels so guilty with Julia being so sick <3 Quote: "Land of Stories books (not the first one), Twilight posters, Poloroid, Skinjacker Trilogy books, Makeup, One Direction posters, Any gift card". Seriously, no obligation or expectation at all, but if you're looking to get something for the kids, I guess that's the official list. Address to send stuff is still my work (sorry Anthony): https://www.juliaadamscancerfund.org/send-a-card ~~~~ Pic: her 'bad' eye (lucky eye) has been open for a bit today, which is ... newish. You can see those pretty lashes and brows coming back! And look at her sitting in her chair watching her iPad... clearly she's got some limb control as she's trying to peel her sock off and get to her pulse-ox =) (And the nurses have made it a personal goal to get her lips to stop being soooo cracked - so they've been pouring on the Vaseline and they look great!)
Video of a very-much-NOT-in-coma Julia in comments <3
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********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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