July 6, 2019

It's the 6th of the month, so Julia has reached HALF A YEAR past her 'days to live' death sentence.  We were told she had one week at most, and that if, against all odds, they were able to stop the cancer, that the damage was already done and she'd have no quality of life.  That she'd never see or talk or move again.  We were afraid that if we interfered with "what was meant to happen", and started alternative treatments, we might trap her in this state between life and death.  That the cancer would be stopped just in time to keep her in coma forever.

I won't even go into the conversations Reed and I were forced to have that first week because they are far too depressing and today is a HAPPY DAY!

Her cancer (clival chordoma) is rare in general, and almost unheard of in children.  According to the Chordoma Foundation's website, chemo doesn't work.  Surgery and radiation are the only options.  That it often (and did) spreads to the brain - particularly the brain stem, where the damage is devastating.  If you dig deep enough on their site, you can find that in a few very rare cases, children (not adults) with a particular sub-type of chordoma, have responded to chemo.  Julia has that sub-type.  In addition, we started immediately giving her alternative therapies that seem to be saving more and move lives every day: CBD / THC / PEMF.  There are a whole list of reasons and opinions as to why these aren't being aggressively studied in the US to prove their medicinal qualities.  I don't know enough to give my thoughts on that, but the cancer growth almost halted with no chemo... so we aren't stopping.  And from the day we were told there were no more options, we asked for prayers, and they came in from literally around the world. Tens of thousands of people instantly fell in love with this dying child.  So it's also possible that Julia's recovery is an actual miracle from God, and that her situation is being used to rekindle faith and hope.  

What's actually going on?  We have no idea.  But we've now seen this 'unbeatable' cancer shrink and stabilize.  We've seen every lost ability return to Julia.  We've been told she has zero neurological damage, after a tumor wrapped around her brain stem, four brain surgeries, a brain infection, a stroke, and coma.  She needs to learn to use her left arm and walk again, and regain her breathing stamina to get this trach out... but who wouldn't after 8 months of bed rest!  And she's only 2!

Of course she has the most amazing team of doctors, (our 2nd and 3rd opinions told us to stay right where we were - CHOP in Philly).  Our oncologist is Dr. Jean Belasco, and it makes me so happy to see the love her in eyes when she talks about Julia's remarkable improvement.  And I've said it before, but the nurses in the PICU and PCU are literal angels on earth.  Everyone adores Julia, and cares for her so expertly and lovingly, even when she's Little Ms. Grouch.    

It was so wonderful seeing Julia's Facebook Friends honor her AMAZING anniversary today with awesome pictures and new profile images <3 <3

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Reed, myself, and Gabriel got back down to see Julia in early afternoon.  She was sideways on the bed contently watching some cartoons.  She was happy as ever to see everyone after a day away <3 But I have bad news for daddy... I think Little Brother has unseated him as "Julia's Favorite Person Ever" - just look at her reaction in the video (comments).  

We had a great play date in bed.  They played with the balloons, and grabbed toys from each other, and then ended up coloring together (Gabriel didn't see to realize he wasn't actually coloring... he was just doing what big sister was!)  We'd sit her up pretty straight in bed, but she would immediately squirm to the side, bolsters or not.  Then she'd get uncomfortable, and try to push herself back upright with her right arm!  It's the first time we're all seeing that.  She's not very good at it yet, and can't get herself all the way up, but major strength improvement =) 

I'll leave the actual update short since I went on about her AWESOME 6 month anniversary!  Happy Julia video in comments.  And "Hi!" to the lady who recognized Reed at Cracker Barrel this morning <3 He was taking advantage of non-hospital breakfast while waiting for his Jeep inspection.  (He doesn't know he's semi Facebook-famous... social media isn't his thing.)  And LOOK at her get that left arm in to clap AND the "I don't know" arms!!

YouTube: https://youtu.be/dqaz8C-idOM

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. ********* ~~ Julia Adams ~~  **********    *********** Official Links ************ **********************************

Julia's *only* pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's *only* fundraisers:  T-shirts: https://bit.ly/2MQc0lF |  https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

Tumbler: https://tinyurl.com/yy6oamph

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. You can find them all on my Facebook page or Julia's website <3