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September 27, 2019

Updated: Sep 29, 2019

A pretty good day, considering everything she's fighting: no immune system and active infection. She got some more platelets this morning. She's thrown up several times, but nothing extreme. She's been happy and content. She had another great session with OT. They had her sitting completely upright in the bed and played a game with her. She participated and seemed to be in a decent mood. So while she is starting to cooperate there (yay!) she still puts all her little might into fighting regular procedures like baths, blood pressures, and string changes. Oncology was in the room talking about the infection, and what the best course of action is. They are talking about removing her port, as it's a hotbed for bacterial/fungal issues. That would require sedation and a trip to the OR. There has been talk of the possible (though unlikely) 13th/14th rounds of chemo, so they're going to figure out what order makes sense. I believe they'd like to do an MRI and make a final decision on the chemo, but they seem to really want that chest port out of her. I don't know if they're suggesting that's how the yeast infection entered or not. At the same time, they will change out her g-tube since it's been in for several months. I personally think the g-tube site looks a little red and bothered... but I seem to be the only one. I also think her neck under her strings has been looking more red and bothered. Perhaps aggravation from the yeast infection. But her antibiotics have been tailored perfectly for this particular fungal infection. They will take cultures every day, and continue until she has 3 negatives in a row. So she's still in the thick of it, but no additional fevers. They say the antibiotics are doing their job, and they are happy where we stand. . I just spoke with the nurse. Julia took a loooong nap this afternoon and she doesn't look sleepy at ALL! But she had a good bath and string change. She's getting ready to go back on the vent (she's been on her HME or T-Piece all day, as usual). The nurse just put Peppa on, and they're going to hang out together until the little one decides to get sleepy =) But she's doing great - no fever, super comfy, awake heart rate in the 130s which is amazing. ~~~~ Reed's home this evening for some catch-up sleep and time with Gabriel <3 We started by throwing some axes with my office people. It was a lot of fun! A really nice escape for 2 hours. And Reed clearly has some pent up anger... he definitely had the hardest throw =) Video in comments: Julia showing daddy where kisses go <3


YouTube: https://youtu.be/1lI6Ia8E7eU .

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********** ~~ 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://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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. 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!