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September 23, 2019

Tough day for Julia. Nothing unexpected, just every cycle of chemo gets worse. Her vitals are fine, no concerns, heart rate while sleeping is 150s, so I'm sure that's not super comfortable. She got her immunity-boosting shot today, and they have her on fluids just to keep things going through her system. They are doing blood work every day now, and they expect all her counts to tank in the next 1-3 days. She's thrown up a LOT today. More than usual for this point in chemo. I think she's thrown up 6 times, with a few being pretty big, requiring new strings/PJs/bedding. So she's been getting her anti-nausea meds all day and so has been pretty much sleeping until she throws up. Obviously no therapy today. Though the short times she has been awake, she's still been happy and smiley <3 Lots of hug requests. She just pats the bed, gets cuddled up nice and close, and goes right back to sleep. Her sleeping away the misery is really best case scenario right now. Oh, and last night after her bath, on a whim, they tried a tooth brush again, and look at those pictures!! She surprised everyone and went to town! She realized it was a Peppa tooth brush, and couldn't decide between brushing her teeth, making the O face while showing daddy the toothbrush, or brushing Fairy Peppa's teeth. But she did a great job =) For Julia's newer followers, the tooth brushing is such a big deal because she has developed a major oral aversion during her time in the hospital - she hasn't wanted anything near her mouth, not even her pacifier. So Speech Therapy really wants everyone to work on 'making things near the mouth fun' (like tea parties) so when they're ready to try eating/drinking again, she will be more cooperative. During the last teeth brushing attempt a few weeks ago, she ALMOST touched her lips with the tooth brush. It was more of a pretend brush =) But last night it was an ACTUAL brush! Those front 6 teeth are nice and clean =) And she was super proud of herself! But other than that, she really has just slept. Easily 20+ hours. I said I'd get a video, but it would just be of her sleeping. Tomorrow I'll be with her during the day since we have our Dupont tour, so she shouldn't just sleep the whole time <3 Though the next ~5-7 days are going to be lots of naps. ~~~~ Reed's brother told me the other day that Reed looks really bad. I honestly didn't notice until he said something, but yeah... Reed doesn't look good at all. So I talked to our nutritionist and she started him on a recover-your-health-after-10-months-of-hospital-life-and-no-sunshine regimen. Patches, creams, supplements, protein mixes, and super-healthy snack bars. Luckily, he will eat or drink absolutely anything without complaint (unless you ask him to eat junk food... then he will complain). The hurdle is getting him to remember/think it's necessary. He never feels hungry, and he certainly never thinks about himself. But today he did 90% of what he was supposed to - he even drank all of his shake even though it didn't mix very well and it was clumpy and nasty. Well, nasty is my word. He said "it's fine". So... hopefully some health improvement all around in the coming weeks and months! ~~~~ Picture tonight is of Julia watching her iPad for about 8 seconds before going back to sleep, her picture on the CureFest 2019 wall in D.C. this weekend, and pictures of her brushing her teeth again like a big girl!! And I don't have a video of Julia... so last night I tried to get one of Gabriel. I mentioned he started saying "Mommy" all guttural and growly, and freaking me out in the middle of the night. So I tried to get him saying it on video. ... he did not end up doing it, but he did keep saying "Demon!" So... probably parenting fail. That video is in comments.



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

Julia's official pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's official fundraisers:

Children's Book:

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. You can find them all on my Facebook page or Julia's website <3

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