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August 10, 2019

Not a huge report today.  Reed got back down to Julia in the early afternoon, and she's been asleep since!  It's almost 10:00 and she still doesn't know he's back =) 

We had a really nice evening with Gabriel.  It's the first time the three of us have been together at home 'relaxing' in quite a while.  I even made breakfast for the first time in like, 9 months.  I FaceTimed Julia late last night and she was doing great, and then this morning SHE FaceTimed ME!  It was AWESOME!!  I'm not sure if she did it by herself, or if the nurse helped, but seeing a call come in from her email address was pretty much the best thing ever.  I took a screenshot for the pic tonight =) Being able to SEE Julia several times, to know she's happy, really helped Reed and I relax and enjoy the night with Gabriel.  

So I just have a few updates from the nurses, since she hasn't woken up yet.  Day 5 of 5 for chemo, so round 10 complete.  Vitals are all fine.  She's throwing up quite a bit, which is expected.  They're looking to try another anti-nausea med to see if it helps more than what she's currently on.  She's done "really well" on her HME today and yesterday, but I didn't get exact amount of hours.

Oh, and I forgot to mention after the trach change on Thursday -- I finally got a good look at her right pupil and can confirm it is NOT fully reacting to light.  It contracted a little, but not like her left (which is working as expected).  For Julia's new followers: her right pupil not responding to light was one of the first signs that the cancer was starting to grow again and putting pressure on her brain stem.  As she slowly came out of coma, right eye functionality was one of the last things to return.  But as of today, the eyeball moves correctly, and the eyelid appears to work 80% of the time.  Sometimes it can kind of get stuck open, which can make the left eye look droopy by comparison.  So the pupil is reacting more than it used to, but not like it's supposed to.  They said it might just stay that way forever. (But she can definitely see out of it.)

~~~

Thanks to everyone staying so involved with Julia's story, and sharing information, I was put in touch with another US family who just got the devastating diagnosis of clival chordoma.  Just like us, they were given a very poor prognosis with no treatment available (only 'quality of life' options).  For whatever reason, the medical community doesn't know it's 2019, and there is (apparently) no way to share current successful treatments/protocols.  So the doctor looking up this family's new diagnosis has NO IDEA that Julia even exists and that she is (so far) appearing to respond to this particular combination of therapies.  

Anyway, I gave them all the info I have.  I suggested she have her oncologist call Julia's oncologist; get details, get verification of exactly what happened, get her medical records - whatever her doctor needs in order to know there ARE treatment options to consider.  I really hope everything Julia is doing can be done by another family with successful results.   I want Julia to be going through this for a reason. 

~~~

Video in comments from yesterday: Julia happily playing with her new mermaid balloon!


YouTube: https://youtu.be/SnJI4P11ZTI .

.

. ********** ~~ 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!