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January 22, 2020

Another quiet day. Vitals are all fine, but BP continues to be a bit low. It's been 70s/40s all day, now it's 66/48. No fevers in several days. She's finished her anti-fungal course, as well as one of the several antibiotics. They discussed stopping another as well (given no fevers) in order to cut down on fluid they're putting in her, since her abdomen continues to slowly get bigger. The red rash is slightly outside of the circled area today, and I think her stomach feels a bit harder. But still no one here thinks it's an infection, and oncology doesn't believe it's a reaction to the new chemo (apparently that reaction rash looks different). It could just be some sort of skin breakdown. The newest change is her abdominal drain, and one of her two chest drains, is starting to leak a bit around the dressing. They're just keeping them fresh and keeping an eye on it... not much more to do. She continues to fluctuate between pretty hot and super cold (physical temperature of her skin - I have no idea what she's feeling). They know the cancer has spread to the hypothalamus region of the brain. Issues there can affect body temperature, which is likely what's going on. And while Googling the correct spelling, I also see it can affect things like weight control, sleep cycles, blood pressure, heart rate, and balancing of bodily fluids. Hmmm... We could definitely have a culprit for everything she's been experiencing. Perhaps if the chemo works, and the tumor starts to pull back from this region, we could see her regain some stability. The wound on the back of her head (bed sore) is healing, but slowly. It's going through all the proper phases it's just taking a while. They just got her a new pillow, I think they called it a z-flow, which allows them to form it to specific positions. So now there is a little pocket where the wound is so she's not putting any pressure on it. . I talked to her oncologist a bit more today. This chemo is being done as a higher dose pulse (5 days on, ~3 weeks off). This chemo attacks cells in their division process, so the hope is to kill as many as possible that are actively dividing right now; then give the body a rest/recovery period, until the next cell division cycle starts, and then do another pulse to kill those off. With this method, they would hope to see rough stability after 2 cycles. Since, if the chemo is working, 'the majority' of dividing (spreading) cells should be killed off over the next few months, so growth should be visibly inhibited. If the MRI shows a growth pattern consistent with what we've seen lately (as in, 'explosive') then that suggests the chemo isn't doing its job and it would be stopped. I have no idea if there is a 4th option. But she confirmed this chemo is typically tolerated very well, especially in kids, so she doesn't expect any complications. And the first round went just fine. ~~~~ Julia has gained a lot of new followers since the news got bad again. Many have asked what she was like before cancer, since they've only seen her bald, really sick, in this semi-coma/paralyzed state, with lots of tubes. So I wanted to find the last video we took before her brain surgery, which started the confined-to-bed hospital stay last November (2018). That... very special toddler video is included in the comments =)

*********** ~~ 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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1 comentário

Jen H
Jen H
23 de jan. de 2020

So with the fluid in her abdomin having her in an almost sitting position will help with her breathing and maybe even her BP. When she is laying flat the fluid is filling her entire cavity and will be very uncomfortable for her. The glowing white on her abdominal CT scans is fluid. My suggestion is to keep her head elevated and legs lower. Like she is in a chair.

Continued prayers sweet little Miss!

You are a fighter and the prayers of everyone are being heard by God. I'm praying for healing.

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