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January 18, 2020

Day 3 of 5 for new chemo. They would hope to see at least stability in 6-8 weeks, if the medicine works. But I don't know if it's really been tried in chordoma... so we really have no idea if it will do anything. They don't expect her to lose her hair. Julia's had an OK day. She continues to look comfortable. She's tolerated the chemo just fine as far as we can tell. She might have had a little spit-up the other night, but just once. Vitals are unchanged. She had another phantom fever (about 100 (38c)) today, which went away with the covers removed. But then both her hands and feet got ice cold again, which her team didn't really like. Her body is clearly having trouble regulating temp. They also said she doesn't seem to be digesting / outputting enough food. Things are slowing down a bit and they don't think it's constipated related. So they're assuming pressure is building again. She still has the drain, so they can just drain more at a time, they're just trying to keep up with her blood pressure issue. It's such a fine balance. But Reed says she's had her eye open several times today, and "definitely" turned it to watch Peppa. She also apparently responded to his "I'm going to get your tongue" pestering that he does. He likes to poke her tongue when it's sticking out. So he said he's going to get it, and she pulled it back in and closed her lips. So... definitely still in there! . Short update tonight. I'm at home with Gabriel and Aunt Charlene's family (he now refers to my house as 'Amy's house'...". We finally got like, inches of snow so we went sledding... in the dark. Speaking of Gabriel. He just came over and handed me a snack bar. I wondered how he got up to the counter... I looked over and he had pushed his little art table all the way down the hall and up against the counter like a stool! Julia wasn't quite this clever before she went into the hospital... I'm not sure what to do with a toddler who can scheme. I don't have a new video tonight, but I'll get one up tomorrow <3 . . .

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

Julia's official pages:

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i 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




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!