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August 25, 2019

MRI results are back and everything is completely unchanged.  Apparently this is really good - they used words like "ecstatic" and "this is great".  I keep being told that "not shrinking" is OK, but it's hard to believe that it's really... OK.  Right?  We want to see it just go away... But as someone explained it: chemo attacks quickly dividing cells, which is generally the cancer. (It's also the lining of your stomach, which is why you get sick, and your hair follicles, which is why you go bald.)  So if this tumor is dead, it's not quickly dividing anymore, therefor chemo would no longer attack it = there would be no more shrinkage.  I guess that makes sense.  So they were all smiles and thumbs ups as they delivered the results.  It's now been 4+ months with a completely stable (or dead?) tumor.  It shrank a lot between January and April, fully releasing the brain stem, and then it's remained unchanged since April's MRIs.  Additional tests will happen once her chemo is over to determine what's going on.  

Her MRI today was bumped up to 9am.  Reed always walks down with her to the MRI lab.  They gave her a shot of 'happy medicine' to help with her anxiety, and she was the happiest, loopiest, silliest little Julia!  The whole way down she was a giggle bug.  She kept pulling Reed in for kisses.  And for some reason, she found it hysterical when they'd go around a corner and her body would naturally shift one way or another; so when that happened, she'd whip herself back to Reed and laugh her little face off.  How random! The nurses thought it was adorable <3 

And then apparently, she "came out of the MRI machine awake and fighting" LOL!  She was NOT happy, and she was taking swings at the assistants.  They had to give her another shot of sedation just to get her on the bed and back up to the room.  And while they were recounting what happened to Reed, she woke up again!  Like, 15 minutes later.  This little girl is not super interested in being knocked out anymore.  But this time she was in the room, and immediately saw Reed, so it was "dadadadadada" *kiss kiss kiss kiss* ..."iPadiPadiPadiPad".  So, clearly not traumatized.

She's been awake since her scans, and she's just been in such a happy mood.  This is her best day in the cycle, and it shows.  Lots of smiles, lots of hugs.  She's cuddled, and played, and watched her cartoons.  

Round 11 of chemo starts tomorrow.  If my math is accurate, her 12th and final round will be administered Sept 21 - Sept 25.  So there should be another set of MRIs mid-October, and then final decisions on where she's headed.  And last I heard, PT/OT is going to attempt to see her all 5 days this week.


Pic tonight.  We bought Gabriel his first pair of big boy sneakers over the weekend.  Kind of random... but also kind of a big moment.  Last October, I had bought Julia her first few pairs of big girl shoes (graduated from infant/early toddler sandals).  You can see I was so excited that she'd now be a stylish little girl, that I lined up her shoes and took a picture =) ...She never wore the gold shoes, and she only wore the black boots once before going to the hospital.  I packed them up around Christmas knowing she'd never wear any of them again.  It was so awful... the shoes you buy your almost-2 year old shouldn't be the last shoes you ever buy.  As Gabriel has grown, I've just had zero interest in buying him shoes.  All I could think about was Julia's brand new shoes forever being unworn.  Charlene always has hand-me-downs, so Gabriel had stuff to go on his feet.  But we found ourselves near a shoe store, and I was able to go in and actually enjoy the experience of buying my little guy some new shoes!  It took 10 months, and I'm sure it helps (immensely) that someday soon I will be buying Julia new shoes again.  But it was a big moment so I wanted to share =) 

Video in comments of a HAPPY Julia bug!


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