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November 9, 2019

Julia has had a fine day! Even the nurse commented that her temperament has been pretty good today =) She only took one crap-nap so she got a bit fussier as the day went on, but still just before bed she is playful and pleasant. Several times this evening she's become a weeble-wobble and yawned pretty big - even agreed to lay down - but just when you think she's about to fall asleep, she sits back up to play with her iPad. Medically, as expected. No new concerns, vitals are stable. Her right eye has remained mostly closed - just open a crack most of the day. The eyeball doesn't seem to move much under there, from what we can see, unless she's looking up and to her right. But her left eye still seems to be doing fine and she really doesn't seem to be bothered by it. She only needs one eye to watch Peppa. The first off-label med we're trying has been approved and submitted by our oncologist, so hopefully she gets started on that ASAP. She also starts on her 2nd oral chemo on Monday. I don't know that this has ever been tried with Chordoma before... given the rarity, likely not. So who knows, maybe we will find a winning combination. We're staying realistic, but as long as she is comfortable, we are not done fighting for her to beat this. It's the weekend so no therapies, but she's enjoyed plenty of playtime =) She had a tea party and went grocery shopping (several times). You can tell she's over it when she starts kicking everything away. And she really enjoyed throwing her blocks into the basket. She's been happy and excited (lots of O face) throughout the day, but it's not as predictable as it might have been a month ago. And in a crazy turn of events, she requested both PJs and socks, AND she helped put them on. ...But as soon as she remembered the sock covers the pulse-ox on her toe, which she rips off, she pulled that sock off and threw it over the bed, and then started picking at the pulse-ox. So she's a one-sock baby, but it's an improvement. Several people suggested the oral chemo might be making her feel hot. The timing works out, so we're going with that. ~~~~ Gabriel is miserable baby today. Still has his cold. Nose is nice and red and raw, and his throat is probably sore from all the coughing. So he FaceTimed me and was all frowns =( But he should be on the tail-end of it. It's his big 2nd birthday on Friday, so hopefully he gets better. We're anxious to get him back down with Julia, but coming up on flu season, this isn't the time to take risks. Hopefully soon. ~~~~ I feel like time stopped a few days before Halloween, when we got the unexpected news... but I look outside and my trees are suddenly bare, and I'm reminded that it's almost mid-November, which is pretty much Christmas =) The WONDERFUL lady, and faithful Julia follower, who does the "Julia's Army" jewelry, has added these beautiful Julia's Army Christmas ornaments to her Etsy store. She already sent me four (yes Charlene, you can have one), and they are perfect. If you'd like one to decorate your tree with this year, they are $12, and all proceeds come directly to our family. (Julia's Army came out in full force for her Jewelry fundraiser, so she wanted to get these listed with plenty of time! Thank you for always being so supportive of our family <3 <3 ) ~~~~

Pic tonight: As she gains more physical mobility, despite tumor growth, Julia has started being able to sleep in all kinds of adorable toddler positions <3 Video in comments: Julia playing with her magnets and bonus clip of Gabriel =) YouTube:

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********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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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