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August 15, 2019

Julia is very tired today, but she's had some good playtime.  Her counts continue to fall as expected: she got blood for hemoglobin earlier today and she's getting platelets now.  

Some medical stuff going on that's making me uncomfortable, as usual.  She's been coughing a lot and there's some blood coming up through the trach.  They've run a bunch of labs and say that nothing is jumping out - "no massive internal bleeding"  (...that made me feel better).  Her temp is fine, and other vitals are decent.  So they're not sure where the blood is coming from.  They say it's not a lot, but it's enough to stain her trach and HME pink.  At the time, the plan is wait and see.  I guess sometimes this sort of thing just clears up on its own.  She also had a gigantic barf that was like, neon yellow. We haven't seen that color yet.  Nothing going into her has changed... so I guess another wait and see.

I've been in a weird mood since hearing her chemo options stop after round 12, regardless of what the MRI shows.  I'm pretty sure surgery and radiation will remain off the table, and immunotherapy doesn't work on her cancer.  So if chemo has reached its limit, then there are no further traditional treatment options.  There is a chance the tumor is dead, so stopping treatment might not be a bad thing.  I'm just going to be paranoid until i know more, since that's what I do best.

The weird mood, plus the blood and neon vomit, did not lead to a great environment for my 2nd trach change.  I didn't want to waste the PICU doctors' time, so I requested just extra PCU staff.  We had 6 nurses/respiratory therapists in the room.  I was not nearly as confident as last week, and it wasn't pretty, but I got through it.


In her limited awake time today, she has happily played with her groceries, finger puppets, and tea set, and she's run her iPad out of batteries several times.  I think overall, less grumpy, just super tired.  They're setting up for her bath and she can barely keep her eyes open.   

Oh, and yesterday when Reed was holding her, it was getting late and time for me to leave.  I picked up my purse and she got upset.  She started shaking her head no.  Sometimes she hits herself if she's really upset.... well I guess she missed and smacked Reed right in the face!  She immediately did her big O expression and then started rubbing his cheek.  It was adorable.


Pic: sleepy baby covering her eyes while waiting for her bath <3 Video in comments: Julia cuddles after bath with never-ending kissies, and then she sets off one of her critical alarms for an irregular heart rate (just because her leads were funny, it's not real), but you can see her adorable O face again!


. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

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

Julia's official 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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