June 30, 2019

Miss Julia insisted on staying up until 6am with Reed - she's so excited he's back that she just refused to go to sleep.  He laid with her for a long time, but every time he thought she was finally getting sleepy, he'd look at her and she'd have a big ol grin and wave her hand two inches from his face.  So... she went to bed around 6am, and woke up a few hours later.  Since then, she's taken one crap-nap and spent the rest of the day pretty grouchy!  She's been barely able to keep her eyes open for hours now, but she refuses to sleep (likely also due to side effect from chemo, as this has happened every cycle).  

But Reed did say shortly after her nap she was super happy and super goofy.  She was giving out lots of hugs and cuddles and kisses; throwing her toys, and playing peekabo. 

She is a snot fountain.  She's been on her secretion-drying-up-medicine for several weeks now, and we're just not seeing an improvement (or maybe this IS an improvement, and it's naturally even worse).  Either way, Reed asked if they'd try something else.  The poor girl needs her nose wiped once a minute, and that's not an exaggeration.  And when she sneezes, it just shoots two big snot blasts out.  And if you're not there RIGHT AWAY, it gets in her mouth, or she gets it all over her fingers while trying to clear it out.  And of course all this extra mucus makes her gag and barf... add that to a nausea side effect from chemo and it's got to be miserable.  They agreed she's on a "pretty high" does of the original medicine already, so they started to wean that off and began a new medication that attempts to handle excess secretions in a different way.  So hopefully we'll see some improvement there.  Seriously, her quality of life would go WAY up if we could get this snot under control.

Oh, and she's managed to get herself horizontal in bed several times today.  She's on the MOVE.  She's been trying to sit up, roll over, scooch off the bed... she's gaining strength by the day.  So I'm hoping that the 'low' of this round of chemo passes quickly, with minimal discomfort, and we can make some headway on the excessive mucus.

So other than a toddler without naps, she's been very happy to have daddy <3 The top picture tonight is from a year ago - Hilary, Alicia and I got our kids together and made them little elf fairy things.  Just because.  Julia is obviously on the left, with fat 7-month old brother on the right.  And then Alicia's Aiden and Riley, and Hilary's Matthew and Clair <3 And the video in the comments is from playing with the balloon yesterday - there is one happy, bouncing little girl!

YouTube: https://youtu.be/N5A6IUTwzRU

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. ******** ~~ Julia Adams ~~  ********    ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* 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