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August 26, 2019

Chemo was delayed until tomorrow.  No concerns, just possibly late orders.  They started her on the extra fluid today, so round 11 will be administered tomorrow morning.  So she had a bonus good day today, which shows in her picture and video =) Vitals are all solid.  She's been on the HME for 9 hours, with plans to go until at least midnight.  

Ophthalmology stopped by to check out her eyes.  They are very happy with her natural recovery.  When looking straight, they are "in agreement", she can look to the right perfectly, and she can sometimes cross center-line and look left.  She does this less often, but she CAN do it.  Her eyelids are both functional.  The right one is slow, but improving.  He didn't comment on her right pupil not constricting, and Reed forgot to ask.  The ophthalmologist said many/most kids who go cross-eyed due to a brain stem tumor never recover, or they require surgery.  At this time, they don't recommend doing anything to Julia (patch or surgery) because she's making remarkable progress.  (For Julia's new followers: shortly after we went into the hospital for a stiff neck, she went cross-eyed in her right eye.  By January she could not move either eye at all / neither pupil reacted to light.)

There was a common question last night: why would they continue chemo if the tumor may be stable/dead?  Chemo works by killing cells that are in the division process.  Cells can be alive, but dormant; and a cell in this state would not be targeted by chemo.  In the population of cancer cells, only some percent will be in the division process at any given time.  The first 3 rounds of chemo might get 25% of cancer cells.  Rounds 4-6 might get another 25%.  Rounds 7-10 might get another 25%.  If they stop too early, they may miss the "last" set of newly-active cancer cells, allowing the tumor to take over again.  So they look at previous cases to determine how many rounds of chemo it took to see prolonged stability / tumor death - which could be several rounds past apparent stability on an MRI. 


September is Childhood Cancer Awareness Month

So you may see an increase in fundraisers: shares on Facebook, local races and events, "would you like to give $2"'s at the grocery store.  Please be generous with your money, even if you recently donated.  Throughout this experience with Julia, many parent-run foundations have reached out to us... I don't have statistics, but based on the literature included, I'd say 75% are in honor of a deceased child.  Think about that.  These foundations are the legacy of their child who didn't beat cancer.  And in their never-ending heartache, they are making a difference for other families... from paying bills and buying groceries, to sewing hats for little bald heads.  They are trying to raise money for a cure, because national funding is abysmal, and they never want another family to be told their child has a 10% chance to live.  Your contribution not only allows these foundations to operate, but your participation confirms that their child and their fight, whether over or ongoing, has not been forgotten.

So maybe set aside some money for the month of September and let your kids pick a few organizations to support.  Or ask your coworkers to all throw in $5 and see if your boss will match it - great social media points.  Or order pizza instead of going out, and donate the difference as a family.  Your school, or church, or bar could all do something... I can't think of an organization out there that can't get behind finding a cure for childhood cancer, and sometimes it just takes someone to organize. So just be mindful of the month, and the reason why many of these family-run organizations exist in the first place. 

Need ideas for a donation amount?

-- $2 - 2 for how old Julia was when she was expected to die.

-- $5 - 5 for how many times a surgeon has drilled through her skull.

-- $10 - 10 for how many months she's been in the hospital.

-- $25 - 25 for how many times she's been sedated.

-- $40 - 40 for how many weekends she's spent stuck in bed.

-- $50 - 50 for how many times literal toxin has been pumped through her veins.

-- $60 - 60 for how many days she had between diagnosis and hospice.


-- $300 - 300 for how many days it's been since she last felt sunshine on her face.

Your money matters.  If all Julia's followers across both her Facebook pages (not counting everyone who follows through her website and GoFundMe), all donate just $25 this September, we'll raise $2,549,465.  That's 2.5 MILLION.  Just from a small donation from people who follow one little girl.  So don't think you won't make a difference.


(On that note - if you have a foundation/fundraiser/event raising funds for childhood cancer, please message me and I'll try to share over the month of September - please message me even if we've already talked... because I guarantee I forgot.)


Video in comments of Julia doing a GREAT job at PT! She is happy and cooperative =) Many one-armed claps and even a few two-armed claps when she's extra excited <3 <3 


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