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November 1, 2019

I think for another few days I will need to start with a reminder that her cancer is growing again, quickly, and that we have limited options. I know we've had such good news for so long, that some Julia friends only check in every once in a while. I just want to make sure everyone is on the same page. The cancer progression can be seen physically in her stiff neck (not the lopsided thing), and her right eye being a bit off. So if she looks strange in pictures and videos, that's why -- it's more noticeable when she looks to the left. She's also a little more restless, and a bit less happy, though we certainly do still get smiles =) They've upped her nerve pain med again today, and she'll be at her full dose tomorrow. This is more for the possibility the cancer's location is causing nerve pain, rather than any super obvious concerns. Earlier when she seemed overly agitated Tylenol did seem to help, so we'll keep that going when needed. I guess I will start reporting vitals again, since we're back here. Heart rate: 140s/150s. Most recent BP: 131/85, but she was wiggling and that's not what it was earlier, so I don't know how trustworthy it is. ET is slightly elevated: 40-50. If things progress as they did in January, we'd expect all these vitals to slowly get worse. . She started her first dose of oral chemo last night. This is much milder than the IV chemo she just finished. It's also a different med. We're really playing everything by ear - they will keep her on it for a week and "see what happens". Possibly continue, possibly double up with something else. I had a very blunt conversation with several members of her team about some alternative options we want to try. Reactions were mixed. As expected. But I reminded them that doing everything "the best way CHOP knows how" still leads to a dead child. (A little surprised to hear one of her team ask, "then why are we doing chemo?" like they would not want to comfortably extend the life of their own toddler... maybe life is more precious to some of us.) But this individual doesn't make the calls, so if there are other options out there, that have reasonable, believable accounts, and likely minimal side effects, then we have to try. I understand the hospital likely can't get behind what we're doing, but I told them I'd like to at least be able to have an open line of communication. I'd rather them not be kept in the dark if something crazy happens, but if they officially need to "not know", then whatever. I also said that all the possible side effects pharmacy comes back with need to be measured against "dying from brain cancer". I mean... you should have seen the consent form for chemo. It was THREE PAGES of all kinds of bad stuff that could happen up to and including death. And I could put together a literal novel of possible side effects for her previous narcotics, anti-seizure meds, paralytics, pain relievers, sedation, anti-nausea meds, blood pressure meds.... Hell, even Tylenol can kill you if you're unlucky enough. But these have been studied. They know what to expect. The FDA has slapped on their seal of approval, at least not for cancer. And this makes people comfortable. Some things we want to do have not been officially studied. So "who knows" what might happen. Is "who knows" worse than "imminent death from an out-of-control tumor wrapped around a brain stem"? I guess we'll find out their official position on that soon. Hopefully they can just slip us a consent form and we'll be on our way. But, even though we are entering uncomfortable territory, it was super wonderful to only be looked at like I'm crazy by one of the team members. Seriously. I felt genuinely heard by everyone, even the one with (understandable) concerns. And it sounds like they are going to start research immediately, and get back to us with any legitimate concerns ASAP. . As far as her day, she had her therapy this morning and had a really great time again! She played along and cooperated. Then we had a loooong cuddle session in bed, playing with her iPad, markers, and grocery basket. Then she insisted she wanted to sit up. She's been sitting up in her Julia Fort (surround of pillows in case she goes splat) for a solid FIVE HOURS. She is soooooo tired, but she refuses to lay down. She's just getting more and more wobbly. And just now she reached down past her feet to grab a Peppa <3 It took a few bounces, but she got it! This has to be the most she's stretched her lower back in over a year. Since pressure on the brain stem can put your sleep-wake cycle out of whack, we're going to let Julia tell us when she's tired tonight. When she starts going out, we'll help her along with some meds. The goal is still some solid restful, healing sleep. . Mr Gabriel is snot-face.... so he's quarantined for the next week or so. Likely from mopping the hospital floor with his face. . Video in smiley Julia in comments <3

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

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