Wayne and Lori Earl receive messages every day from strangers still mourning their late daughter, Esther. Esther's YouTube videos and blogs still receive comments of "I love you" from people discovering her for the first time. Bloggers from all over the world mention her in posts in various languages.
It's been more than two years since Esther died at the age of 16 after a four-year battle with thyroid cancer, but it's possible that more people celebrate and mourn her now than ever before.
"She reminded me that while we imagine sick people as 'fundamentally other,' they are not," said author John Green, who met Esther at a Harry Potter convention, became her friend and dedicated his most recent novel, "The Fault in Our Stars," to her last January. "They are every bit as alive as any other human being."
What's Left Behind
Since her death, Esther has inspired two books, a charity organization, an unofficial holiday and countless online communities she loved to participate in when she was home from school and feeling isolated because of her illness.
"I feel kind of like I'm fooling people," Esther once said contemplatively in a YouTube video she shot in her family's dining room, which became her bedroom when she could no longer walk up the stairs. It wasn't long after Green first trumpeted Esther's "awesomeness" and declared her birthday a holiday in one of his popular video blogs. It wasn't long before she died.
"I'm not always this perfect person," Esther told the camera. "I get pissed. I do stupid things. I get angst-y. I cry. I hate my cancer. ... I sometimes wish I'd never gone through this."
In the video, which was shot two weeks before she died, Esther said she was getting test results the next morning to show how a new round of chemo was working for her, and was frightened that she might learn the cancer had spread. She talked about how lonely she was, how tired she was, how confused she was. She wondered aloud whether she would be the same person if she'd never gotten cancer. Toward the end, she advised viewers to talk about their feelings, too.
"Holy crap, the brain has a lot of feelings – and your heart, or whatever, is an-anatomy, -anatom-a-klick-kluck-klee correct," Ether said, as she struggled to pronounce "anatomically" and finally gave up.
She then signed off, and her face was replaced with what looked like a cartoon of a blue platypus as she made some comically dramatic crying sounds in the background.
Last week, an online visitor came across the video for the first time and wrote, "I have seen four videos of hers, and I miss her so much already."
Esther's diagnosis, metastasized papillary thyroid cancer, came on Thanksgiving Day 2006. She already had tumors in her lungs. Although the Earl family had recently moved to France, which had been a dream of Wayne and Lori's, they moved back to the United States in early 2007 to be near Boston Children's Hospital for Esther's treatment.
The following Thanksgiving, in 2007, her team of doctors told the Earls that Esther was terminal. All treatment would go toward prolonging her life, not curing her of cancer.
"It was a death sentence, and nobody believes it because 'You're going to be there, right?'" Wayne Earl said. "You realize it was a downward spiral from the pronouncement."
Over the next three years, Esther would undergo tests, surgeries and experimental chemo and hope for another year.