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June 12, 2019

Julia had a pretty good day for numbers falling!  She's currently on her second breathing sprint (that's where she's fully disconnected from the vent and doing all the work on her own) - her first one went really well.  She was down to one a day while on chemo because she was just so tired... but back up to two now.  

All her vitals are great for post-chemo.  Heart rate is elevated, limited vomiting, and a bit grumpy when she can't sleep, but no concerns.  She's overheating easily under her blankets, but just removing them cools her down (though she protests) - so far no fever.

The definite highlight of her day was coloring in the playroom!  It's been a while she she's been in there =) She grumped a bit as they took her out of bed, but they told her she was going to the playroom to color and she was ALL SMILES!  They disconnected her from the vent and put her on the HME (just an end that humidifies the air), and Reed carried her to the playroom =) She sat in her own little chair like a big girl.  She leaned into the table a bit, and Reed was there to support her, but she did most of it all on her own!  They turned a tupperware box over as a little foot rest so her legs weren't dangling, and she was just the happiest, most content little girl ever!

The nurses took a few short videos that I combined together (in comments).  The loud noise you hear is just her HME.  You can see she's drooling a little - that's because she has difficulty swallowing so it has to go somewhere.  Oh!  Speaking of that.  They noticed that while sitting up in the playroom "the waterfall of snot" from her nose and mouth was drastically reduced.  No answers yet, but it prompted speech therapy to want to try swallowing exercises again - possibly tomorrow.  There is a chance that being in an upright/active position is allowing her to swallow a bit better than laying in bed.  So they're going to give it another shot =) 

PT and OT stopped by today while she was in the playroom, so they let that be her session instead.  Everyone goes out of their way to never even sneak therapies into the playroom - they want it to be 100% fun for the kids.  And speech came by after coloring, but Julia was too exhausted.  She colored for over an HOUR - holding her body up pretty much on her own, and doing 100% of the breathing work (first time while sitting up / coloring).  Near the end she just sort of slouched over onto Reed.  He asked if she was ready to go lay down and she did her happy "yes-bounce" thing. 

She just got her bath and string changes, and is now slowing fading out to Peppa.  So really the day couldn't have gone better =) 

[And update on me - the left upper-abdomen(?) pain I've been having is still there (I've just been ignoring it), but over the last month or so it's spread to the side of my breast and my left armpit has felt swollen and tender, and my left arm has been going numb and tingly (not anxiety - that's a different feeling!)  Chiropractor doesn't seem to have an effect.  So yesterday they ordered a mammogram.  That's a terrifying word, considering.  I guess I won't procrastinate with that one.  Hopefully nothing too exciting to report when that's all taken care of... No date yet.]

Short video of vent-free coloring time in comments <3 



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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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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