Update March 2020
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).
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...
Then we witnessed a miracle.
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.
Julia's obituary is online here: dellafh.com/obituary/Julia-Adams
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 is stable and comfortable. I'm updating a bit early tonight since I know people are waiting. Last night I was doing a few extra updates to the nightly post, but I was only posting those on my personal Facebook page (so her Facbeook page, GoFundMe, and website don't see those). Our position last night was "could die within 24 hours if something doesn't change". They were able to make some changes, so I believe, at the time of writing this, that she's "OK" for the i
Today has been pretty decent for Julia. Vitals have all been really great: heart rate 120s, respiratory rate 20s/30s, oxygen saturation 90s, ET 40s, BP varies from 70s/40s (low) to her normal 90s/50s. She has looked very comfortable, outside of things like bath and trach care... but she hated those during her best days. They've made her Albumin + Lasix daily routine official, to hopefully draw off some of the swelling. Other than her belly, which is always swollen now, th
Julia's vitals are really good today: Heart rate 116, ET low 60s, Oxygen Saturation high 90s (on 35 assistance, down from 45), BP 103/59. She did have a slight fever of 101.something but Tylenol got it back down to under 100, so they're just keeping an eye on it. Yesterday her ANC counts were at 0, today the are at 700. Our doctor referred to it as a "dramatic increase". They like to see a number above 1000, and once the ANC starts to rise, they expect the other metrics to