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February 14, 2020

Round 2 of chemo attempt #3, day 2 of 5.


Things have been pretty OK today.  She had a fever this morning 102.9 (39.4), but Tylenol and removing the blankets slowly brought it down.  Since then, no fever.  She's back to her typical torso-warm-limbs-cold thing, but it's not crazy.  I just feel like I want to tuck everything under covers but leave her big belly out to air.  Pretty sure I did that when I was pregnant.  


I think her belly looks a little big (nothing like the extreme picture from weeks ago), but a little more taut.  But the nurse tonight says it's definitely better than yesterday when the drain was clogged.  She described it as super shiny and rock hard, today it is not shiny and has a little give.  So I guess improvement even though I don't see it.


Vitals are decent: heart rate 160s, ET low 40s, BP 99/52.  I asked if they can drain a bit faster from her abdomen to catch up with things, and they said they were giving her 24 hours to even out to try a higher volume again - I guess her BP dropped a bit last night.  Fluids and stopping the drain brought it right back up.  But it's been solid all day, so hopefully in the next few hours they will try to bump up the rate again.  


They are also in the process of weaning her steroid, which she started during her bad BP episodes a few weeks ago.  The team seems pretty certain that the steroids are the leading cause, among other, less treatable things, of her thin skin issue (veinieness / redness / wounds).  So, getting those steroids out of her systems in the next week or so might help.


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I had a nice Valentine's Eve with my little guy last night <3 After 15 minutes of coaxing by Aunt Charlene, he finally walked out carrying his gifts to me.  I got it on video and it's super sweet <3 So we cuddled and shared some of his chocolate truffles.  Well, he licked them all and put them back in the box.  Then I got bonus little guy today!  He was at my house for a bit before I came to the hospital so Charlene and Jonathan could go out for a Gabriel-free Valentine's lunch.  (He now says "Go to Amy's house to see Mommy".  Confused... but technically accurate.)  


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Julia's story continues to gain new followers (hi!).  If you'd like to know how we got to where we are, I now have a summary with pictures here:

juliaadamscancerfund.org/summary

That should answer a lot of the common questions <3      



Video in comments (slow internet).


YouTube: (link when I get home)



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*********** ~~ Julia Adams ~~ ***********   

************* Official Links **************

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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




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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!