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July 30, 2019

Well, it's the 30th of the month.  That means we've been doing this for 9 full months.  I could have had another Julia! 

(Julia update at end - feel free to skip to it)

9 months ago, around 6pm, I was at the Spirit Halloween store in Exton with Charlene and her two kids.  It was the day before Halloween and we were shopping for last minute costumes.  It was the first time Julia and Gabriel were using a side-by-side double stroller.  It was so cute.  Gabriel was such a big boy at 11 months old, and he was so excited to sit next to his sister!

But despite all the fun stuff to look at, and being out with her cousins... Julia just stared at the ceiling.  Her head was cocked back at an odd angle, and she just looked straight up.  Her awkward positioning was even more obvious when seated next to a normal baby.

I suspected something might be wrong with her neck for about two weeks at that point.  But I wasn't sure since she was otherwise normal and happy... she just liked looking at the ceiling.  And at that time, my dad was entering hospice near the end of his cancer battle (melanoma), and I was busy with that, so I rarely went out with my kids.  

One time I had to rush to my dads house so I thew my kids in the car.  Julia was doing her ceiling-stare and making it difficult to buckle her chest straps.  I manually adjusted her head to look down and she screamed bloody murder.  I'll never forget it.  I rationalized that I probably caught her hair in the shoulder strap... it was an over-reaction to hair being pulled... but... toddler.  When it happened again the next time (after making sure her hair was snag-free), I realized something was going on.  Given her otherwise normal demeanor, I assumed a trip to the chiropractor was likely in her future - something was probably out of place and pinching a nerve.  That can hurt.

Anyway, her ceiling-stare had gotten more pronounced as the weeks in October went by (obvious in hindsight), and it couldn't be denied while shopping for a costume.  I remember exactly where I was standing in the parking lot as I argued with Charlene.  Charlene wanted Julia to go to the doctor.  I didn't.  I was over hospitals. I was at a different hospital every day with my dad. I had been doing it for 6 months.  Emergency after emergency.  "we found a mass" "something is bleeding" "the tumor is growing"  "it's affecting his memory" "there is another lesion" "the treatment isn't working".  Day after day after day.  He had just entered that hospice, and as horrible as that was... there was a relief that I was finally done with hospitals.  

I didn't want to spend all night in an ER with Julia.  I didn't want them to struggle to find a vein, and poke her over and over, just to be sent home at 6am to "follow up with her pediatrician".

But looking at Julia, I couldn't disagree.  Something was going on.  Worst case, she broke something during one of her tumbles off the couch.  So I called the doctor.  She said to take her to urgent care.  Urgent care took one look at her stiff neck and said they wouldn't touch her, and that she needed to go to the ER.  Apparently a stiff neck is a classic sign of meningitis.  So we went to Chester County Hospital.

Reed met us there and Julia clung to her daddy, like she does.  They tried to get her sedated enough to do a CT scan and she fought with every ounce of her little body!  They injected her like, 3 times... and it wasn't enough.  That's my girl =) So they transported her to CHOP where they are better suited to handling toddlers.

Her Little Red Riding Hood costume was never opened.  Gabriel went around with Aunt Charlene and his cousins, dressed as the Big Bad Wolf.  I called Charlene mid trick-or-treat and told her they found a mass on Julia's brain and it was bleeding. 


The rest has been posted about here on Facebook... every day since the day before Halloween.  Well, I missed one day in November (before I realized this was a nightly thing!), and all my friends wanted to know where my update was.  So I accepted these updates are something I'm doing... and here we are 9 months later.


And since people ask - in hindsight we recognize typical cancer symptoms.  But they are also typical toddler... symptoms.  In June (a year ago) she was as normal as can be, by October she was greatly affected.  Looking back, we can tell she was losing weight quickly (we chalked it up to bouncing on that stupid donkey 18 hours a day), she didn't want to eat (toddler), she was fussy (teething), and she was exhausted (toddler).  The only other unusual symptom was she sweat a LOT.  By October, if she took a 15 minute nap on you, you'd have a Julia-shaped sweat stain where her head was.  It was excessive enough that I remember Googling it and mentioning it to her doctor.  They said "it can be normal".  No one was concerned.  But once we were finally at CHOP, our neurosurgeon wasn't surprised.  He said it's likely the metabolic activity from the cancer going crazy.  And as soon as he cut the majority out of her head, the sweating stopped.  And of course, we can see her neck getting more and more stiff as her videos progress from June to October.

Anyway, that was 9 months ago.  That sucked.  Lots of days in between sucked.  But she's still here, she's fighting, and things are looking.... OK.  There is a chance she beats this, and has no memory of all these surgeries, and the coma, and the chemo, and all the awful days... just a few battle scars to show how awesome she is.  It's possible.  And then everything will be fine =) 

(This post wasn't supposed to be sad - just a recap, especially for Julia's new followers <3 But boy, that picture of Gabriel in his costume next to an empty seat, looking all sad and lonely, sure tugs at the heart!!)

~~~~ Julia Update ~~~~ A decent day for Julia.  She threw up a few times, but the last two were probably related to irritation during her string change.  Vitals are all fine.  She spent most of the morning grumpy - likely because her sleep schedule is all over the place.  She's been taking a really long nap in the afternoon, and is usually much happier after.  

She had a session with Speech Therapy today, but Reed was at lunch and we didn't get details on that.  She had a great time coloring with the nurse, and she kept hiding the markers and doing her "where is it?" arms - the nurse got a kick out of that =) She's also starting to understand things like, "We need to change your strings / give a bath, and THEN we can color / iPad / tea party".  She's getting better, but still fusses.  But she's at least starting to understand it's a necessary evil and then something fun happens.  It's progress.  She also understands "don't hit / don't scratch" when she gets aggravated.  She immediately stops and starts petting their arm instead.  (Or she gets distracted by their fancy watches!  She likes hitting all the buttons.)

Reed drove home to drop off his car today and get some clothes together.  He requested a specific weird burger from Uno's (and he must have really been craving it because he never has an opinion about anything!).  It's got like 5 different meats and is easily over 3500 calories... which he needs, so whatever  While there, I had a period of... extended eye contact with the bartender (we were seated at a booth).  I saw her do a double take on Reed and then glance at our wristbands.  She didn't do anything more, but I immediately told Reed she recognized him.  Sure enough, she came over a few minutes later and we had a really nice talk =) She's been following Julia for months and noticed Reed right away!  She so generously picked up our entire bill... we didn't even see it.  (Hi!  I know you're reading this, and that really made my night.  Thank you for coming over.  ...Reed still thinks it's weird that people know who he is, haha.)

So we just got back down here and I took a video of us walking in.  That always makes for a happy Julia!  Snot face alert.  Video in comments <3

YouTube: .


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