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February 6, 2019

Another day of mixed emotions.  A really low low and some really high highs.

My uncle passed early this morning.  I'm sure you can already guess to what.  Cancer seems dead set on wiping out my family =( I hadn't seen him in many years - he lived in New York and we missed each other the last time I went up to visit.  I only even found out he was sick 2 months ago.  It can happen so fast; and I can honestly say I'm more terrified of cancer than anything else in this world.  Please do whatever you need to to get regular checkups and stay healthy.  Once I stop using stress as an excuse, I have some MAJOR life changes to make.   -- I know you're all anxiously awaiting MRI results... we don't have any.  We won't get them until tomorrow.  Apparently Julia has an entire team of specialists who look at them before we get details.  And something about all the special hardware she has (in the exact same area as the cancer) makes it difficult to read so they take extra care to review.  So ... tomorrow.  

In some good and really good news - Julia's vitals are FANTASTIC today!  Her heart rate is low 120s, her oxygen saturation has stayed at 99 or 100% all day (AND she's back to breathing room air AND she's breathing "over" the ventilator assistance), her ET has been high 40s(!) - No one has any idea why it's seen such a huge improvement today.  And her BP is great at 115/76.

She's had a few mild fevers come and go, but they've been manageable with just removing blankets and changing position.  They haven't even needed to use medication.  The oncologist explained that during the recovery process sometimes neutrophil can recover so rapidly that it produces a mild swelling/fever-type response.  It's not dangerous, just a natural bodily response.  They believe that's what's happening, because Julia's numbers are skyrocketing.  She is ALREADY 'fully recovered" (count-wise) and ready for the next round of chemo!  They're going to hold off until cycle day 22 just for stability - but they are very impressed with how quickly she bounced back.   They're also super happy that she hasn't faced any typical complications yet.  We had to make the hard decision when choosing which chemo to go with.  We opted for this one (a much harder, more aggressive, [but more effective]) chemo, but the risk of complication is 85%!  And complication can be mild-to-severe, and can delay recovery by many weeks.  So far (fingers crossed), no complications at all.  To be fair, she paid her dues with rare complications in November and December.

Her hair is rapidly falling out - you can see it thinning in the picture.  We will be saving some when I finally get back down there tomorrow.  I feel better about the hair loss now than I did the first day it started.  It's falling out because she's fighting, and I'm OK with that!  They also loosened her collar quite a bit, so they're slowly weaning that support.

Her eye is still responding to light.  And OMG, Reed told me a few other things and I'm just so happy to share!!  Apparently the oncologist saw a few reactions (while Reed was sleeping) and didn't even mention them until Reed initiated the conversation, because she was second guessing herself.  Julia has been completely unresponsive for what, a week now? Maybe more?  The oncologist saw Julia grind her jaw, do a whole-face grimace/contortion when the nasal suction was used, PULL AWAY from a flashlight check, and she MOVED HER SHOULDERS!!! 

Guys.  She's been completely immobile from the neck down for a MONTH.  Not so much as a twitch....

I feel like my motto needs to be, "We're trying not to read into it, but..." BUT Reed had such hope in his voice during our phone call tonight.  We have no idea what the MRI will show tomorrow.  But OMG she's made several brand new movements today!  Who cares that her hair is falling out!  She's going to be my bald SQUIRMY little girl!  

I'm soooo hoping she opens her eye again on her own.  I can't wait to share that moment with everyone.  I hope the MRI tomorrow is neutral news, at worst.  I don't expect the cancer to have shrank in such a short amount of time, but "no or minimal growth" will really be fantastic.  

So that's the update today.  Such wonderful physical reactions from Julia.  But I hate that I've lost another family member to cancer =( My uncle never even got to meet Julia.  I hope he's up there fighting for her along side my dad.  Please keep my uncle's loved ones in your prayers over these next few days.  And please hope for good news with our results tomorrow <3 


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


Julia's *only* website:  juliaadamscancerfund.org Julia's *only" Facebook page: facebook.com/JuliaAdamsCancerFund Julia's *only* GoFundMe:  gofundme.com/juliasfightagainstcancer Julia's *only* official fundraisers:  Beef & Beer (Feb 23) - https://bit.ly/2RDXUF1 T-shirts - https://bit.ly/2MQc0lF


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!