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August 12, 2019

Vitals are as expected (heart rate getting higher for week after chemo).  Barfing quite a bit.  Lots of secretions, lots of coughing.  All normal for this point in the cycle.   She's had a Peppa DVD on repeat pretty much all day.  And the nurse walked in earlier to Julia trying to color on her iPad screen with a crayon.  ... I guess typical toddler?

She has been AMAZING on her HME.  Yesterday she went on at 10am and didn't come off until 3am.  That's 17 hours!  She actually fell asleep with it at night and was still doing fine.  They just wanted to give her a break, so they took her off around 3.  And today she went on at 9am and is still doing just fine =)

As a reminder - the HME is a small device that caps the end of the trach (directly outside her throat), this allows her to be completely disconnected from the vent and do 100% of the breathing on her own.  The HME just filters and humidifies the air (since it's not passing her mouth/nostrils).  Being on the HME increases her strength and stamina, as she doesn't have vent assistance and has to work harder for each breath.  The goal is to go longer and longer on the HME, until she's ONLY on the HME and never needs the vent.  Once this happens (for an extended period of time / possibly months), they will consider removing the trach.  

So she's just doing fantastic, even during chemo administration when she's exhausted.  Everyone has been commenting on her sudden improvement.  We'll see how she holds up this week as her blood counts start to fall.


Oncology also gave their approval for her to leave her room.  I guess she can stroll through the halls or possibly even go outside... she hasn't felt fresh air in 9 months.  Rooms / hospital events with other kids are limited while on active chemo (makes sense - we're not in a rush for that anyway).  But being able to take her on a walk a few times a week, or possibly every day(!), would be AMAZING.  It might not start this week with her white cells dropping, but as long as the vomiting is under control, maybe she'll have her first hospital stroller ride next week <3 


I got here while she was sleeping, and I was sitting on the computer when she woke up, so she didn't know I was here.  There was some 'smacking' commotion so I looked over and saw her really trying to use her left arm!  I'm not sure what she's trying to DO, but she's clearly trying to do something, so I took a video.  In comments =)


. ********** ~~ 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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