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August 4, 2019

A pretty good day =) She slept for 10 HOURS last night.  She woke up once to barf, but she went right back to sleep.  This is the longest she's slept in a row since she was admitted =) Poor girl's sleep is always so interrupted by nurses and machines beeping... healing sleep is so important.

So she got up and played with her grocery basket pretty much all day.  It's her favorite thing ever.  They tried to get her sitting up in bed - back fully upright with pillows/blankets propping her.  It was... mostly unsuccessful.  She just immediately squirmed her way right back down.  I'm sure it's uncomfortable and tiring to support herself.  

They got her back on her HME today and she went for more than 3 hours, which is great!  I think they were just going to let her go as long as she could, but around the 3 hour mark she started to struggle (in her case, that means her oxygen saturation was starting to dip). So they took her off, put her back on full settings, and drunk-sleepy baby showed up.  After working on her own to breathe, having the machine finally help must be so relaxing.  She got the heavy eyelids and goofy smile.  Gave out lots of hugs.  But fought her nap for HOURS.  She's been asleep for about an hour now and is very comfortable.

Chemo start sometime this week - possibly tomorrow, but could be as late as Thursday, so TBD.  Also, THANK YOU for the secretion management suggestions recently.  Several of you have had kids in Julia's situation (secretions uncontrollable by typical meds), and you shared what ended up working.  I took screenshots of exactly what you wrote, and Reed gave it to the nurses to discuss with the team at rounds.  Today they came in with a nasal spray that is in the same family as one of the suggestions, so they're giving that a try =) They seem to be open to options since she's not responding to the normal treatments.  (The nasal spray went about as expected on a fussy 2 year old.)  Hopefully one of these makes the difference, and we can finally shut down the snot factory.


To answer a few common questions about her next MRI / chemo:

--- I believe an MRI is scheduled after round 10 of chemo, which might start as early as tomorrow, so that would be ~3 weeks from now.  But she's on a weird MRI schedule so it's not guaranteed.  It's possible they wait until after round 12.  I believe they are going to do all 12 rounds regardless, so "what's the point" (other than people want to know).

--- The current plan is 12 rounds.  This is based on only two case studies on this chemo and this cancer: one took 12 rounds one took 17.  I am SO hoping she only needs 12, but I'm prepared for 17.  

--- The MRI showed tumor shrinkage between January and April (which is amazing and "shouldn't have happened"!)  This shrinkage was enough to completely release the pressure on her brain stem, which allowed her to come out of coma. But the MRI between April and June showed no additional shrinkage.  They are 100% certain nothing grew, and they are VERY satisfied with results, but I think we were all a bit disappointed.  Those results make the next MRI even more important (and nerve-wracking):

--- Best case: tumor is not visible on next MRI.  Given her history, and how this chemo is expected to work.. no one is counting on that.  Totally-acceptable case: tumor is smaller - proving her treatment plan continues to work.  Also (possible) acceptable case: tumor continues to show absolutely no change.  If this happens, I assume the plan would be to complete the 12 rounds, allow her body to recover a bit, and then do a biopsy of whatever is left to determine what it's doing.  There is a chance it could be dead.  She could live a totally normal life with a clump of dead cells in her brain, assuming it didn't start growing again.


Video tonight (in comments) of Julia sleeping peacefully during an HME sprint =) She's on her new HME, which I guess is not really an HME - I think it's called a T-piece.  But you can see that her stats are pretty good (green is heart rate, white is breaths per minute, blue is oxygen saturation).  Oxygen saturation is a touch lower than they'd like, but not bad.  And you can see she's not even hooked up to her vent - the tubes are going off to her left (the vent is off to her right, and is shut down).  So she's breathing 100% on her own here - and being able to do that while sleeping is even better!  So this new T-piece is working much better than the loud HME adapter.  ... And I added a cute Reed / Julia hug video at the end - exactly 1 year ago today.



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