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May 2, 2019

Super early update - everything is fine!

I have the slightest sore throat ever... it's likely nothing.  I probably slept with my mouth open or something stupid.  But the paranoia is extreme when your child is undergoing chemo.  Now I'm terrified I'm coming down with something and accidentally breathed on her face yesterday... I'm supposed to have trach training but I'm not going anywhere near her until I confirm it's nothing.

I'm posting early tonight because I've decided to go see Avengers last minute (since I can't see Julia).  But it's a 9:00 show, and I don't want to be 2 hours late for a Julia update.  Unrelated to Julia... but I actually figured I wouldn't be seeing this movie.  I'm a HUGE Marvel fan, and like most Marvel fans, have been waiting for this finale movie for like, 10 years.  But... I've seen EVERY Marvel movie opening weekend with my dad.  And the thought of going to the finale now that he's no longer here really sucks.  So I've been avoiding it.

Side story - November of 3 years ago, I got frustrated that my dad always had a crappy computer.  He played video games with us all the time, and for as long as I can remember he used hand-me-down computers that would have barely been decent 5 years prior.  He OWNED an IT company!  He fixed computers for a living, but he always had junk for himself.  We had been looking forward to an awesome new game for a while (a sequel to one we played forever - Rainbow 6)... we both bought it, but it wouldn't even run on his computer =(  He was pretty bummed.  So the next day at work, we 'window-shopped' for a custom computer for him.  We picked the best of EVERYTHING.  Of course he couldn't afford it, but it was fun to dream.  So naturally I bought it the next day, and he was SO HAPPY when all the parts showed up!  I actually have a picture of him and his technician putting it together.  For the first time in his life the computer guy had a brand new, top-of-the-line gaming PC.  It's actually sitting under my desk right now.  Hasn't been turned on in 6 months... not sure what to do with it.  

Anyway, I bought that for him in November, so of course when Christmas rolled around, he really insisted I not get him anything.  I promised I wouldn't spend anymore money on him.  So instead, I colored some silly, childish 'coupons', you know, like the "breakfast in bed" vouchers a 5 year old gives.  They were for "1 free ticket", and I poorly drew a logo of an upcoming movie on each.  It was a HUGE year for Marvel movies, so there were many.  ANYWAY.  That was a long way of getting to the point.  After my dad passed in November, we packed up his stuff and I found a zip lock bag of all his movie tickets.  And in that bag were all these stupid coupons I made him stapled to the ticket stubs from when we actually went.

Seeing movies together was just a big thing for us.  

So I told Anthony (owner of U-neek where I now work), that I wasn't leaving early to go to trach training; he said he and his dad are going to see Avengers at 9:00 and there were still seats.  I bought the ticket, and I wrote this update early... but I'm still torn on whether or not to go.  I should go.  I think I'll go...  But the guilt of my dad not being here AND Julia fighting for her life (even though I can't be next to her) is really making it difficult.   In fact... typing this, I'm realizing I've given up almost everything I've enjoyed since Julia got sick.  I don't play video games anymore (and that was a several-hour-a-day hobby for like, 20 years), I don't write in my book anymore, I don't go dancing anymore... I don't mean any of that in a depressing way, There's just too much guilt if I spend any time doing something I actually enjoy. My days are taken up with working, driving, visiting with Julia, Julia's social media (which includes her updates, research, and sometimes hours of answering private messages), and exercising - and the exercise is only to rehab my back so I can bend over her bed easier.   

Anyway, that was a whole side thing.  Hopefully by the time you read this I will be at a movie.


Julia had a pretty OK day today!  Her vitals are decent.  Her heart rate is pretty high, but that's how it's been the week after chemo.  It's been in the 150s/160s; they want to see 120s for her.  She got some platelets earlier today.  And she's been SUPER snotty, so that makes her kind of miserable.  They're still looking into options.  But right now she's a happy smiley bug because Paw Patrol came on.

OT visited again, and got her sitting up in bed.  You can see it was NOT a hit.  She was not interested in interacting with ANY game, other than "give things to daddy".  So she would pick up something, and give it to Reed.  And when they were finished up and everything went back in the bucket, she mouth "no", then reach in to get it again and give it to Reed!  In the end, all movement is beneficial, so whatever!  It was about a 30 minute session, and then she was out.  It's so nice to see her sitting up TWO times in one week.  I can't wait to get to doing it every day <3 

Since I'm not down there, I asked Reed to at least take a random video for me to share.  So he got one as he walked back into the room.  Lots of cute waves! It doesn't matter how long (or not) he's gone, she is SO EXCITED when he comes back!  And OMG her little face at 20 seconds is THE BEST THING EVER.  Just the way she lowers her eyebrows a bit, shakes her head, and mouths "no" is total deja-vu.  This is an EXACT face she would have made 6 months ago... just with more hair.  It is sooooo nice to see the personality that I remember start to come back. <3 <3 <3  I've watched that part 20 times.  I just want to squeeze her! 


. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

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

Julia's *only* fundraisers:  T-shirts: Children's Book: Jewelry:

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

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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sophia palladini
sophia palladini
03 mei 2019

Have you tried teaching her basic sign language? there are also these communication cards, they have pictures of things and words written out on them and she picks them up and gives them to you so you guys know what she wants. Those help my little sister who is non-verbal so I was thinking it would be an even bigger success since her developmental age is about her regular age. hope this helps!

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