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July 13, 2019

(Things are better - I'll put that here so you don't read fast looking for it <3 ) Oh man, Julia looked AWFUL when we got down there last night.  I didn't want to freak everyone out by going into detail... but it wasn't good.  She was so pale and clammy looking; she was breathing shallowly and rapidly; she wasn't completely unresponsive, but definitely not the reception we're used to.  Her doctors and nurses were all in the room, watching and running tests.  And I don't help anyone's stress level because I'm incapable of asking normal questions, instead I jump to, "Is this going to kill her?' which I'm sure knocks everyone off their game.

She was throwing up soooo much.  And of course she can't tell us she's going to vomit, and she can't really sit up or roll over.  So we watch for clues - she starts kicking her legs, you can see her stomach puff up, and she will point to her mouth and stick out her tongue.  Reed is amazing at noticing it - he will jump out of a dead sleep and get to her with a wad of gauze in his hand.  He holds it in front of her mouth and just catches everything, then suctions her mouth before she can aspirate.  This poor girl just puked and puked and puked.    By far the worst we've seen.  And because she doesn't really have food in her stomach... we're not totally sure what it was.  Bile, for sure.  Maybe mucus.  Near the end it was turning a brownish color so it's possible there was blood mixed in (that's happened before, but nothing confirmed). So where we stand now: Julia looks a LOT better.  She seems to be responding really well to Tylenol and the 3 antibiotics.  Although her blood work didn't suggest dehydration, they treated her for it anyway... I mean, how could she not be with all the barfing?  She improved quickly with fluids.  By the middle of the night, the vomiting had mostly stopped, and the fever continued to come down.  She became more herself (though exhausted) through the evening.  Neurology was super happy to see her responses when they came in to do their check - they were checking for swelling in the brain, since we've been-there-done-that.  Though they were satisfied with her response, they opted to tap her shunt anyway to test her brain/spinal fluid.  That came back negative.  

They did a brain CT scan today to rule out any isolated pockets of infection - that's all clear. (No word on her tumor, which I'll accept as good news.)  Most cultures have come back and nothing indicates infection.  I think they're just waiting on one more.  But currently, no fever and her color is much better.  Vitals are great.  Not vomiting since last night.  She's acting like Julia again.  In between being sedated for tests, she's given out LOTS of smiles and giggles to everyone, including the nurses.  So she's feeling much better.  She's been sleeping ALL afternoon after her CT scan.  People will come in to check on her, she swats them away, readjusts herself, and then goes right back to sleep.

... Maybe she caught on to Reed leaving on Fridays and was faking it? =) I don't think you can fake an actual fever... but you never know with this one.  

So, not out of the woods yet, but she's responding to medication and so far everyone is happy with vitals and test results.  


But I am so full an anxiety.  It's been back-to-back-to-back this week.

Yesterday I thought I woke up with a small cough, but it went away and I didn't think anything of it.  Today it was back, and then went away again.  But my entire body feels like crap.  Not flu-like or anything... probably just too much stress.  I'm very tired.  I feel like I could sleep until Monday.  I'm staying away from Julia for a day or two just to be sure I'm not coming down with something.  

Anyway, I took advantage of being home today by stress-cleaning.  And boy did my house need it.  There are some areas of my house I can't even remember cleaning... that's how long it's been.  I got to know the baby spiders, and they've since grown up and had families of their own.  So now we all hang out.  They don't bother me; I don't bother them.  Though one did start to creep his house over into my makeup section, so I had to slide a piece of cardboard in there... I need my space.  And the downstairs almost looks like an adult lives in it again. 

So Gabriel and I are watching lots of cartoons and cleaning.  And he's been carrying around the same piece of cheese for like.... 2 hours.  I'll take a pic.  Ok, and apparently he has no shirt and only one shoe.  This is the extent of my mom-ability today. Short video from today in comments <3



After writing this update, I learned the devastating news that a little boy name Jackson, who has been fighting cancer right along side Julia at CHOP, has passed away.  I don't even know how to process this information right now... please just pray for his family. 

  Hug your kids.  Donate to childhood cancer research at every opportunity.

. .

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