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July 29, 2019

Fussy baby.  She fell asleep around 2am, and then when Reed woke up, the day nurse said when she got in at 7am, Julia was awake and on her iPad, so who knows when that happened!  She took one short nap between 9-10am and that was it.  Gruuuumpy.  She JUST fussed herself to sleep for a 20 minute nap but then woke up and puked =( So she might have had an upset tummy for some of the day.  She is a more pleasant mood now that that's out of her system.  But now she's hiding with her left arm draped over her face (trying to avoid her impending bath).

Other than that, vitals are solid.  Everything is rising again, and she's doing really well, considering.  Round 10 of chemo could start as early as next week, and then I believe an MRI will happen (not positive).  The plan is still 12 rounds of chemo and then "we'll see".  We have no idea what happens after that since there really isn't a solid game plan for this cancer.  Of course I REALLY want her to be done!  But at minimum, her little body needs a break =( I want her to focus on strength and recovery (and being a kid), but of course the risk rapid regrowth around her brain stem needs to not be a factor.  I would be totally OK with 'stable tumor' at this point.  

Anyway, so other than being fussy, opinionated Julia is in full force =) Reed and she went back and forth about her wanting something in the room.  She was getting angry that he couldn't figure out what she was pointing at (she doesn't always point straight at what she wants... and there's a lot of stuff in the room!)  But after much trial and error, and upset Julia faces, he finally found it.


... it was the tomato again.  

So.  Now she's happy she has this stupid tomato back in her bed.  WHY DOES SHE LIKE IT SO MUCH??? Toddlers are strange creatures.

They also had an argument earlier when "iPad was sleeping" again.  This little girl will wake up out of a dead sleep if she hears the iPad locking mechanism that secures it to the wall.  (And of course this is all very adorable and we could not be more happy that we get the chance to see her fuss fuss fuss about everything <3 <3)

FaceTimed with brother Gabriel today.  Snot running all down his face. His fever is gone, and no puking, so he's getting better not worse.  But I'm not going anywhere near him.  He will just have to continue his vacation with his aunt and cousins. (Besides, they have a trampoline, so their house is 100x more exciting than mine... he's not exactly disappointed.)  He can even say 'trampoline' and 'bounce' now.  Priorities.  


I had my first real PT session today.  It went really well.  It felt good, physically, to use muscles that haven't been used in years.  But more importantly, it felt way different mentally.  I've done PT before, and personal training, and exercise programs... but they always felt like a chore.  A year ago, the thought of rehabbing my back seemed like an insurmountable tasks.  So huge, in fact, that I never really had any intention to try.  But life-altering events sure can change your perspective.  Now, compared to being surrounded by cancer... PT is a vacation!  All I have to do is SHOW UP and do what they say, and things will improve!?  I realize it will take time and hard work, but like... I have control over this.  So many things in my life I have no say in, so I feel like I'm going into this with a whole new mindset.  This will be so much more successful than my PT attempt several years ago.  So current plan is 2x a week, in between work and driving to hospital. ~~~~

Pic tonight - Smiling Julia with some of the sweet pictures I've been sent.  Video in comments - Cute video of Julia getting very excited when I realize she's asking for her iPad. And I have a cute one of Gabriel picking raspberries for the first time, so I added that.  But then I remembered I likely have a similar one from Julia one year ago, doing the same thing for the first time (since they are just a year apart) It's too short, but it's sweet <3 Hopefully next year they're picking together =) 

. .

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