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March 10, 2020

Julia's doing OK right now.


I'm not 100% sure of details here, and I didn't get down to the hospital before posting as expected, because someone didn't know how to park... so info might change by tomorrow.  


But last night I guess they determined the sump (nose tube) was out of place and had caused an ulcer in her stomach.  That's why the tube had been a darker color once in a while.  I kept asking if it was bleeding... but when they would open it to drain, it wasn't obviously anything but darker bile.  (This ulcer / bleed might be why she's needed platelets a few times - like again today.)


Anyway, so somehow they determined it was out of place, I assume by an image, so they pulled it out.  They wanted to replace it in the other nostril, but they couldn't get it in.  They could get it about 12cm in and then it would stop. I guess all the doctors and NPs were in there with the tongue depressor trying to get this tube in, and it just wasn't going.  So they got her mouth opened nice and wide to take a look, and "they saw a large blood clot blocking the way".  Nurses words.  


I... personally didn't know blood clots could be... not in the blood?  Like, don't those belong in veins and stuff?  I know clotting blood outside the body would just be a scab, but they referred to this as a clot.  That might just be the medical term.  This is not my area.  I also thought clots were really small.  Apparently this was large enough to see clearly.  Which seems super bizarre to me.


My initial thoughts are... was there a bleed in her stomach and somehow all the blood wasn't getting sucked out the tube.  Excess could be brought up with a cough or reflux, and maybe it all didn't get out of her mouth.  Because she doesn't swallow or move, it just kind of pooled at the back of her throat clotted (no idea if blood even works this way).  But I would have expected her spitup to look bloody, and it really didn't.  It was light green bile.  


My other thought is... is this tumor?  Is this just a mass of tumor that broke through her throat and is now visible?  I mean, her primary tumor IS pretty much right there, just on the other side of her throat wall.  Tumors can drill through just about anything, so I don't think it's a stretch for it to be in her throat now.  But I really have no idea.  No one said tumor, just 'big clot'.  


They could have ENT scope her... but that's invasive and uncomfortable and likely wouldn't give them a whole lot of actionable info.  If it's a clot, they don't want to break it off.  If it's a tumor, they aren't going to do surgery.  So... I guess it doesn't really matter.  


So the nose tube has not been replaced.  For now they are hoping the g-tube vent will handle this extra bile (it handled it for many months... it just fell behind a month or so ago when this sump was put in).  So it MIGHT do the job again just fine, and a scope/replacement tube wouldn't be required.


These are questions I wanted to talk to a doctor about... or at least Reed, before my update, but schedules changed and I haven't seen him yet.  So hopefully I'll have better details tomorrow.


I believe they gave her quite a bit of extra happy meds because that procedure isn't super pleasant, so she's been sleeping most of the day.  At least we have a tube-free adorable Julia face right now <3


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We're trying something special tonight.  I convinced Reed to switch with me, so I'll be at the hospital tonight, and he'll be at home.  And as a bonus... little guy will be there with him <3 This will be his FIRST sleepover with Gabriel in... well, a really long time.  Don't quote me, but maybe 8+ months.  


We were supposed to make the switch much earlier, but CHOP is home to some of the worst parkers on the planet.  So he was parked in for quite a while.  And there it little they can (or will) do about it.  The people never responded to the page, so eventually a security guard maneuvered the Jeep out with like, a millimeter of clearance.  So Reed got home quite a bit later than expected.


But Gabriel is super happy, and they're preparing for their sleepover <3 


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No video tonight.



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*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************

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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://bit.ly/35ppbSx

Jewelry: https://etsy.me/2E1mR8i

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here: juliaadamscancerfund.org/summary




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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!