Search

February 23, 2020

Not a great day.  Well, overall vitals are OK, but she's just not in a good place in general.  We seem to be losing the battle with her body, regardless of whether or not the chemo might work.  


She had a small fever last night which eventually went away.  Then it came back all of a sudden today at 102.5 (39.2).  Tylenol and removing covers helped.  Since then, both fever and heart rate are slowly coming back down.  But she's been sort of out of it most of the day, like you can get with a fever.  There has been some response, but just a very zombie-ish.  


The biggest concern is the lack of fluid coming out of the abdominal drain (60-80ml every two hours, rather than the 150ml goal).  Her belly is continuing to swell, and is starting to get shiny again (which is what it does when it pretty much runs out of room to swell).  This swelling happened in January when she was at risk of dying within 24 hours.  But they did an abdominal drain and found it was a TON of fluid.  So they were able to drain it back down to a normal size, and in the process, they found the drain was acting as a sort of dialysis, which handled her not peeing.  She was in pretty good shape for the next month+.


But now the drain is slowing, and ultrasounds are showing that despite the big stomach... it's not fluid.  They are doing a different ultrasound tomorrow, with contrast, which will give them a better idea of what it is (swollen organs, and absence, infection, etc.)  But... there will be limited options to do anything about any of those things.  And of course it's possible the cancer is everywhere and tumors are what's causing the swelling, though that would require a CT scan.


But with a reduction in fluid output, and still not peeing, and a swollen abdomen getting worse by the day... she's just in a bad situation.  The current theory is that her organs are holding onto fluid.  And fluid removers, like Lasix, aren't a real option with her limited kidney function.  So, we might have limited options, and things could get bad quickly. 


That's where we're at.  So not great.  Hopefully we'll know tomorrow.  But this ultrasound would have to reveal something completely unexpected (and fixable) to get Julia past this new hurdle.  


~~~~


I know her body is failing.  I'm saying it right now.  I'm sharing this information to keep everyone in the loop, because we've been in this together for so long.  I'm not giving these details looking for some new person to repeat what I've already stated here.  I'm not in denial. I know.


Please tag my sister, Laura Jean, on any comments that still managed to not get the memo.


Hopefully we'll get amazingly unexpected news tomorrow.



.

.

.

*********** ~~ 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.  A current summary can be found here: juliaadamscancerfund.org/summary






610 views4 comments
follow me
  • Facebook Social Icon

© 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!