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July 21, 2019

Round 9 of chemo officially done.  She had a MUCH better day today!  She was awake and happy, and played SO MUCH.  A Facebook friend dropped off an activity bag with lots of fun stuff in it - the foam alphabet puzzle was a huge hit.  She didn't quite use it as intended, but she really got a kick out of any letter she could stick on her finger.  O was her favorite.  So we did that for quite a while, and then she colored.  Well, we had the markers out.  She mostly just took the caps off and stuck them on her fingers...

Oh, and she did give the nurse quite the heart attack yesterday.  Reed had a box of raspberry chocolates on his desk, which Julia managed to pull off and get all over her bed.  So the nurse came in to what appeared to be sheets splattered with blood... I imagine that's quite alarming!

And we now find ourselves saying, "iPad is sleepy.  iPad has to go to bed" several times a day when she wears the battery out (to which we get the 'no finger').  She even knows where iPad sleeps.  The little punk called me over by mouthing, "mamamamama" and when I got there she changed it to, "iPadiPadiPadiPad" and pointed to the wall -_- 

But a seriously great day for Julia <3 So nice given where she is in the chemo cycle. ~~~~

And just a quick FYI: all brain cancers / brain stem tumors aren't the same.  I mention this because I often get messages about another child who has "Julia's cancer", and I'm always surprised because her cancer is SO RARE.  So far, only one was accurate - Mia in Africa.  (Of course I happily talk to EVERY family you guys link to me!  But that's not the point.)  

So I just want to let you know, in case you don't, that there are dozens of pediatric brain cancers and brain/spinal/CNS tumors.  60% are on or near the brain stem (where Julia's is), but hers doesn't even make the top 10 list.  Other kids you follow might have medulloblastoma, DIPG, or ATRT.  Julia has clival choroma - technically a bone cancer that often affects the brain stem due to location (she was originally diagnosed with ATRT).

Did you know that brain tumors are the most common cause of cancer-related death in kids?  4500 new brain tumors are diagnosed every year.  That's 12 a day.  One every 2 hours...  Every single day.  Think about how often a new family gets this devastating news.  And some brain cancers have the same prognosis (as in "very very bad") that they had 40 YEARS AGO.  That's because there isn't enough funding.  Only 4% of national cancer research money goes toward children.  

So, every time you see that St. Jude donation flyer at the grocery store, or pass by Alex's Lemonade Stand outside Applebees, the answer is "YES! I DO have an extra $3".  Put back the soda or pass on the app if you have to.  This is worth your money.  Our kids deserve treatment options more current than 1970.

(In fact, Julia has 100,000 followers, give or take.  If we were all bugged once a month for $3 toward pediatric cancer research [and said yes], we would raise $3.6 million every year.  So don't think your couple dollars don't make a difference.)


And because my normal life has become a sawtooth of highs and lows, that was a fine segue into - Julia's Freddy's Fundraiser is TOMORROW!

If you are local-ish to the Exton, PA area, take your friends and family to dinner at Freddy's TOMORROW, Monday July 22, between 4:00-8:00pm.  (If you work around here, let your coworkers know too) ***Just make sure to mention Julia to the cashier or it won't count.***  You don't even need to come in - their food is just as good through the drive-thru =) I expect to be there most of the evening.  Gabriel will be there until he starts being an cranky toddler and then I'll auction him off.


Video in comments <3 


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