March 15, 2020

Well here we are.  

Julia Caoilainn Adams

December 2, 2016 - March 15, 2020

Middle name is pronounced "Kay-lynn".  

Last night we watched Julia's heart rate slowly drop, just a point every 30 minutes or so.  We tried to sleep, but really couldn't.  Reed ended up lying in bed with her, and I sat next to her while starting on her photo for tonight.  I knew it was coming, and I wanted to have most of it done.  I looked up at her monitor every 20 minutes or so and sometimes saw the next number down.  

Eventually the doctor came in and offered to bump her up to 100% oxygen (she was headed that way anyway) and remove the pulse-ox.  It was having a hard time getting a reliable read.  They also offered to stop bothering her with the blood pressure cuff.  We agreed, so they took off those attachments and shut off the related monitors.  The only thing left on the screen was her heart rate.

I was in working on gathering pictures for her collage as her heart rate slowly dropped through the 80s.  Twenty minutes after I last checked, both the doctor and nurse came in and I looked at the monitor to see a heart rate of 44, 43, 42...  

Reed was laying in bed hugging her, and I was standing on the other side holding her hand and rubbing her head.  We both told her what a great job she did, and how beautiful she was.  I told her she would learn all about Julia's Army soon, and everyone who loves her so much.

She passed peacefully in about 3 minutes at 6:15am.  Not a single twitch or grimace.  

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CHOP has been wonderful from the day we arrived in the ambulance.  They dimmed the lights and closed the curtains at the right time.  They silenced her alarms and turned monitors away.  Her room was quiet and peaceful.  They spoke in the most respectful whispers.  Professional and sympathetic.  As soon as they confirmed her passing, extra nurses came in and quietly unhooked her from everything they could, to allow us time with her unattached.  

It's the first time in almost a year and a half that I was able to give her a big hug without fear of hurting her. 

I put her charm bracelet on her wrist and made sure they knew it is to stay with her.  She also has a necklace they will put on once she's cleaned up and her trach is removed.  It just says 'daughter', and I have the matching 'mother'.

We made sure to sign the papers to donate whatever possible.  Likely not to other sick kids, because of her cancer, but definitely to research.  Pediatric chordoma specimen are needed.  

And then we left CHOP.  Hopefully forever.  

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Last year when we were told she had days to live, I quickly wrote an obituary. I needed to tell the world how wonderful she was. But... I don't need to do that this time, because you all know. The story of her amazingness is right here for anyone to read <3

So what should Julia's legacy be?

I'd like it to be a reminder that we need a cure.  And unfortunately, the money for that cure is going to have to come from all of us.  Please, every time you're asked to donate a dollar or two to any childhood cancer foundation... do it.  (If you really don't have it, don't feel guilty <3)

I know it's easy to think your $1 won't help.  But across all of Julia's platforms, we can measure just under 200,000 unique visitors.  And that doesn't count people who don't 'follow', people who follow based off others' shares, friends and family of people who follow... If we knew that number, all in... what would it be?  500,000?  More?

If 500,000 people took "donate that dollar in Julia's name" away from this journey... and donated 7 times throughout the year when asked at the grocery store... Julia's Army would personally complete the Chordoma Foundation's current research funding goal by the end of the year.  For just $7 a piece.  The Chordoma Foundation is ready, they have a plan, and they are making breakthroughs... they just need the money.  And once they're funded, we can move on to curing the next childhood cancer. (welcome.chordomafoundation.org/all-in-campaign/)

Julia certainly made her contribution.  She fought the fight with a smile on her face and a never-ending amount of sass.  She showed the world that kids WANT to live, and that they have so much strength and sweet innocence.  She showed everyone what the youngest fighters can do if medicine just gives them an inch.  In the end, she is leaving all the tissue samples researchers need to learn as much about her disease as possible.

I had hoped she would come through this, and grow up to cure cancer herself.  But perhaps her story is enough to allow the rest of us to do that for her.  

So, please donate in Julia's name.  Every time.  If you have it.  

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And please continue to involve yourselves in the stories of other sick children - financially is usually the most practical form of support, but just 'being there' and not leaving is huge.  Let these other families know their children matter right up until they're healed, here or in heaven.

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Today is sad, but we are so happy Julia is no longer in pain.  No longer confined to a bed unable to communicate.  It's not the ending we wanted, but we know she is OK now.  And I guess she finally 'met' all of you <3 I wonder what that revelation was like.

Try to smile when you think of her =)

- Julia's mom

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Hi, I'm adding some details to the end of this post with Amy's permission (to hopefully avoid hundreds of identical messages):

- Amy lowered the GoFundMe goal to show a 'completed' amount in January, when things were no longer suggesting a long-term fight.  It is still active.  If you'd like to donate, the money would go toward final expenses and much needed stress-free time off work.  They both have a major life change ahead of them with Reed going back home, and really just starting to get to know Gabriel.  But please know they are doing OK right now, so please no obligation at all.  It's just here because people will ask.

gofundme.com/juliasfightagainstcancer  

- Julia's charm for her bracelet can still be ordered.  (Please allow extra time to receive it, I understand there are many orders <3) 

https://etsy.me/39bKtpg  

- All of Julia's fundraisers are still active (links at bottom of post) if there is something you missed that you'd like to have.

- Please follow Julia's Facebook page for any future Julia-specific updates.  Possibly things like events to help other families in the future.  We will keep her Facebook page solely for that purpose: 

facebook.com/JuliaAdamsCancerFund/  

- If you are local and are interested in April's Blood Drive in Julia's Honor, please make sure you're following that event page.  With COVID-19 going on, and upcoming Chester County restrictions, we might have to postpone.  If we do, announcements will be made on that event page.  It will be an opportunity to meet Julia's family, whenever it happens.

facebook.com/events/210598516753692/  

- Nothing is expected, but since I know people like to send cards (and other things), the best mailing address is Amy's office (Amy said to write "Sorry Anthony" after that):

Amy Largent

C/O U-neek

259 Norwood Road

Downingtown, PA 19335

- I do not believe a public service is being planned for Julia.

- And please no unexpected visitors to the house while Amy and Reed grieve the loss of their daughter.

Thank you all so much for all the support throughout Julia's journey <3 

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*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************

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Julia's official pages: 

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's official fundraisers: 

T-shirts: https://bit.ly/2MQc0lF |  https://bit.ly/35ppbSx

Jewelry: https://etsy.me/2E1mR8i

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here: juliaadamscancerfund.org/summary