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Update March 2020

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Julia passed on March 15, 2020, at 3 years old.  She bravely fought against a very rare form of childhood cancer (clival chordoma) for 1.5 years.  She spent the duration of her diagnosis receiving wonderful care at the Children's Hospital of Philadelphia (CHOP).

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This website was created as a way to inform friends and family about her progress, as information was coming so quickly, but it quickly became a way to share her story when it went viral in January 2019.  The rapid growth of the tumor on her brain stem had put her into coma and she was given days to live.  I (her mother) posted a desperate plea here and on Facebook asking for prayers... 

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Then we witnessed a miracle.

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Over 2019, the world watched this little girl wake up from coma and beat every odd and obstacle in her path.  For 6 wonderful months we watched Julia blossom and we thought she'd beat this awful disease.  Her entire story, from before we even knew it was cancer, is here in my daily updates.  Scroll to the bottom, to October 30th 2018, to read from the beginning.

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Julia's obituary is online here: dellafh.com/obituary/Julia-Adams

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Thank you so much to everyone who followed along, and for all your generous donations, financial assistance, and thoughtful gifts.  Your support made this journey so much more bearable, and has allowed us to bring awareness to the reality of childhood cancer.  I have disabled many links on this site, as they mostly linked to events and fundraisers, which have all been discontinued.  So what remains is the blog with all Julia's beautiful photos and videos, her FAQ (not updated), the summary (not updated), and the t-shirts, which are still available for purchase <3 

Julia Adams' Story...

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Sunday April 12 (Easter)

Thanks for all the Easter messages <3 I hope everyone has had a good day. Our first holiday without Julia was about as expected. We're...

Saturday, March 28, 2020

I figured I could do another update.   Some final arrangement info on Julia:  Her obituary is online.  A three year old looks so out of...

Friday, March 20, 2020

Friday, March 20, 2020 I was thinking of waiting until after the weekend to give an update on how we're doing, but I read about the Red...

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...

March 14, 2020

She's still hanging on, and comfortable, but I'm afraid we're pretty close to the end. Just a few days ago, her heart rate was sustained...

March 13, 2020

She's comfortable, but we're starting to see some more negative changes in her vitals. The abdominal drain has continued to let out about...

March 12, 2020

She's having a stable day. Julia's abdominal drain had been slowing down again over the past week.  At "its best", shortly after her...

March 11, 2020

Post kind of all over the place again. She's still hanging on, but pretty out of it today.  I've seen her eye open twice, but it didn't...

March 10, 2020

Julia's doing OK right now. I'm not 100% sure of details here, and I didn't get down to the hospital before posting as expected, because...

March 9, 2020

Another stable day.  Heart rate 170s, BP currently 86/49.  No fevers since her spike a few days ago.  She got some platelets since she...

March 8, 2020

A stable, comfortable day.  Which is pretty much what we hope for right now.  Vitals are decent: heart rate 160s, BP 67/36.  No fevers. A...

March 7, 2020

Julia's had a really stable day.  Vitals are all decent: heart rate 170s, BP 70s/40s.  No fever today, and heart rate is out of the 190s,...

March 6, 2020

I was reminded that today is the 6th, which means we are officially 14 MONTHS past "days to live".  She's not in great shape right now,...

March 5, 2020

No real changes today.  Vitals are the same: heart rate 170s, BP 70s/30s.  No fevers.  She needed some platelets yesterday, and that...

March 4, 2020

Still here.  Still comfortable.  Still sleeping. Vitals are all the same: heart rate 170s, BP 81/45.  She's still on the max dose of...

March 3, 2020

Another short update as nothing much has changed.  Vitals are the same: heart rate 170s, ET 40s, BP 70s/40s.  No fevers. She's been very...

March 2, 2020

Super short update... really nothing has changed. Julia has been sleeping comfortably all day.  Lots of sleeping - definitely much more...

March 1, 2020

I can't believe it's March already.  (She's the same - I'll add that in before I ramble a bit, because I know everyone skims for it.) Two...

February 29, 2020

Julia had such concerning symptoms two days ago, that (without any real medical knowledge) I assumed she had another brain hemorrhage /...

February 28, 2020

She's still hanging on.  She's comfortable. She has stabilized a bit today, but she's kind of been up and down the last 24 hours.  Blood...

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