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July 24, 2019

A pretty good day!  No barfing; good naps  Those seem to be the standard for a good day.  More energy than yesterday which is great. 

A psychiatrist stopped by today and talked a lot about Julia.  They wanted to know what she was like before all this, all her complications and procedures while in the hospital, her demeanor now, how she might have changed, etc.  I guess the next step is to observe her at different times of the day, and during different procedures.  Ideally, they can help her enjoy her time here a bit more; at minimum, they just want to help her relax during basic things like diaper changes.

Right after that, OT stopped by with stacking cups and a ball.  Julia wasn't interested, so it was another short session.  Oh, speaking of.  I guess the psychiatrist asked for Reed's feedback on the therapies, and he did mention that they seem a bit sporadic.  Sometimes they're all here at once, sometimes we randomly don't see them for several days.  I don't know if he mentioned the sessions are often short if she's not in a good mood... but I seem to be the only one not OK with that.

We decided not to bring Gabriel down for a play date this week.  Julia's counts are dropping (as expected) due to chemo, and Gabriel spent 4 hours crawling on the floor at Freddy's on Monday.  We want to see if his body cooks up anything interesting before exposing his sister.  So... hopefully play dates will commence next week.  And Julia should be on the upswing then so she should be feeling better as well =) 

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I find it really weird when "realization" (or whatever it is) hits me.  Like...  fractions of a second when I realize I'm likely living in survival mode.  Which is apparently a real thing. 

  A few weeks ago I was in need of chocolate at my office, so my coworker brought over a pack of unopened Christmas M&Ms.  Christmas is my faaaavorite time of year - I'm seriously already looking forward to the next one in January!  But seeing those colors together: Red, Green, and White... it was like actual fear.  No, that's not the right word.  But like this sense of doom.  And that things aren't OK.  And that everything is very very wrong.  Since I was a kid, those colors have been happiness.  And now it's like... I just need to skip over the season, because terrible things happen.  It's not grief (I don't think... at least not yet), it's more like denial.  If those colors don't exist, then Christmas doesn't exist, then the time of my life doesn't exist.

And that sensation happened again just now, which prompted me to write this into my update for tonight.  I am on my laptop making a website for my BFF.  I haven't hand-written HTML in at least a year.  So looking at this familiar screen, and listening to my "website work playlist" (Film Scores Radio)... my mind started to wander as it used to.  I used to work on auto-pilot while I kind of day dreamed about the book I've been writing forever, and then once I'd finish up my web stuff, I'd have a ton of scene revisions to do.  So a particular song came on and without effort, my characters barged into my head.  Like, "Hey, there you are! Where have you been?  Anyway, let's get started..."  And I actually wanted to puke.  It was a very immediate, physical reaction.    It's like a hidden part of my brain just went into high alert, screaming, "NO NO BAD BAD ABORT!"  

It's like I got too close to a store entrance with merchandise in my hand, and the anti-theft alarm went off.  Or I stepped over the foul line while bowling and that big loud X sounded and scared the crap out of me.  Like - Hey, you're not supposed to go there!  And I'm like... Right.  I'm not.  Sorry... my bad.  Total accident... I'll just be going that way now.

It's interesting, observing this survival mode from an "outside perspective".  (Can it be an outside perspective when talking about my own mind?)  I have little emotion, other than DO NOT ENTER, associated with the nightmare my life became around Christmas.  I can't even really "casually" pull up a memory of that time, because my thoughts just slip to something else.  I go through the motions, and do what I need to do, But I'm detached.  Just every now and then I set off proximity alarms reminding me to stay back. I'm sure my therapist followers are groaning, knowing what is likely coming for me in the future.  I imagine these safety walls don't stay intact forever.  Honestly, I'm just sitting here thinking, "Man, that's going to suck for me someday!"  But it keeps me functioning in a pretty content state right now, so I guess it's serving its purpose.

However, it does seem that things that bring me sentimental joy (like Christmas and writing my book) are strictly off-limits.   ~~~~

Picture tonight!  LOOK AT JULIA! Reed told her, "Daddy needs to change your strings", and that was her attempt to get away!  Another one-two punch with emotions... how sad is it that this is all she can do to escape something she hates... but also... LOOK AT HER GO!!   And Reed drove his Jeep home this afternoon, so we went to dinner and drove back down together.  We walked in during her bath and this was her happily giving daddy some hugs <3

As I'm typing this Reed is in the middle of a string change. The alarms are going off and I have not run out of the room yet... improvement.


YouTube: https://youtu.be/vFZhgDNbNpE

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

Julia's official pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's official fundraisers:  T-shirts: https://bit.ly/2MQc0lF |  https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

Tumbler: https://tinyurl.com/yy6oamph

Car Magnet: https://tinyurl.com/y4nxr3lr


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


Chordoma Foundation: www.chordoma.org

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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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!