Esther Earl Died of Cancer Two Years Ago, but Continues to Inspire Friends and Strangers Everywhere

Nov. 1, 2012— -- 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."

Diagnosis

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.

Through it all, she couldn't often go to school, but she loved to read. She soon found that she could be "normal" online through blogs and videos. An avid Harry Potter fan, Esther learned about Green's books and joined his online community called the Nerdfighters. She also connected with Andrew Slack, who founded the Harry Potter Alliance as a way to blend fandom with activism.

Eventually, Esther needed to wear little plastic nubbins over her nose that connected to an oxygen tank, which she named "Denmark" in her last video. "You guys have never met Denmark," she gushed after explaining that she's afraid of the stove because she's somewhat flammable with the oxygen. "He's my oxygen machine. I love him."

Meeting John Green

Esther and Green met in 2009 at LeakyCon, the Harry Potter conference, during the concert part of the event when everyone is supposed to dance. Green was feeling awkward and noticed Esther sitting at a table off to the side, so he went over to say hello.

"The birth of our friendship was that I don't like to dance, and Esther was too sick to dance," Green said. "I liked Esther a lot immediately. ... She was just a nice, normal person. Uncommonly mature. Uncommonly empathetic. She sensed my own anxiety in those situations."

He didn't even realize she was a key organizer in his Nerdfighter fan community but eventually they became friends despite the more than 15-year age difference. ("When she first told me about him, I was like, 'Wait a minute I don't want this to be creepy,'" Esther's father said, laughing. "He was just smitten by her personality.")

Most people didn't even know Esther was sick, and wondered how her hair could be so perfect in video-chats at 3 a.m., Wayne Earl said. They were wigs, of course, because of the chemo.

"For her, the Internet was a place where she could be well and normal and not have people look at her as having cancer," Green said.

The month before she died, Esther invited Green to her Make-A-Wish in Massachusetts. The Make-A-Wish Foundation grants terminally ill children wishes -- for example, to play football with the Eagles or meet Cookie Monster -- but Esther just wanted to meet her online friends in person.

After that, Green posted a video about Esther ("Or, as she's known on the Internet, CrazyCrayon!"), and people wanted to know more about her. He told his viewers to vote for the Harry Potter Alliance, which was competing for funds at the time, with Esther -- but not for Esther, "because if I say that to Esther she will throw up in the back of her mouth and hate me."

Although Green originally told the world about Esther by video-blogging about her and later dedicating his best-selling novel to her, Slack of the Harry Potter Alliance said he believes Esther gained a following because of her "quirky" and "absurd" sense of humor and her ability to listen to others.

"John Green loves Esther because Esther was lovable," Slack said in an email. "And that's why I love Esther."

Esther's 16th birthday became Esther Day, and Green told her it could be about whatever she wanted. She said it would be about family, and telling people you love that you love them -- kind of a reverse Valentine's Day. Three Esther Days later, the Nerdfighter community still celebrates it. It even had a celebration in Quincy, Mass., this year.

'Rest in Awesome'

Esther died in the early hours of Aug. 25, 2010, three weeks after her 16th birthday and two days after she decided to withdraw from high school to get her GED.

The Earls took Esther to the hospital because she was struggling to catch her breath, and they learned that her body was overloaded with fluid, in part, because she had a compromised kidney. But Wayne Earl didn't believe it was the end. Not yet, anyway.

He turned to Esther as she lay in the hospital bed and asked if she wanted him to send her love to her followers on the family's blog about her health as he had done many times before. She shook her head and said no.

A scene from Harry Potter popped into his head, and he thought about how Harry didn't stop to say goodbye as he walked into the Forbidden Forest to defeat Voldemorte, thinking he would die in the act. He had to face death on his own.

"That's what Esther was doing," her father said. "I remember sitting down, and I was full of tears."

The next day, people who knew Esther or had found her online mourned, and Green posted another video called "Rest in Awesome, Esther."

In the video, Green held up a lime-green rubber bracelet that Esther's friends wore during her Make-A-Wish that says, "This Star Won't Go Out," which refers to the meaning of Esther's name: "star." He also told them that if they wanted to help, they could donate to the fund set up to pay for Esther's care.

Five people commented on the video this week alone, more than two years after it was created.

"Esther, my friend, Godspeed," Green told the camera before signing off.

'The Fault in Our Stars'

Three months after Esther died, Green threw out the book he was working on about a kid on a deserted Island and decided it was time to write a book about illness, a topic he had experimented with following his five months as a student chaplain at a children's hospital. Although he already had 70,000 words of a children's hospital book written, he started over. He called it "The Fault in Our Stars."

"It did not occur to me until very shortly before her death that the story I had been writing could be made better by the knowing of Esther and the anger at her illness," Green said.

His main character became Hazel Grace Lancaster (Grace is also Esther's middle name), who had terminal thyroid cancer and an oxygen tank named Phillip. Hazel isn't meant to "be" Esther, Green said, but he couldn't have written the first sentence without knowing her.

He said she taught him two things: that teenagers can be empathetic in ways he never knew, and that sick people aren't "fundamentally other."

"Even amid very serious illness – far sicker than Hazel – Esther was extremely funny," Green said.

He dedicated the book to her, and it became a bestseller before he even finished it.

This Star Won't Go Out

With a boost from Green's video, money started pouring into the Earls' fund for Esther's treatment. It was even more than they needed, so Esther's mom, Lori, started a charity called This Star Won't Go Out.

In its first two years, the nonprofit raised almost $90,000, which went toward 48 families, all of whom had a child with a life-threatening illness, Lori Earl said. They're on track to break $100,000 by the end of the year.

"High school and college kids write us all the time to say, 'Our club at school is going to do a fundraiser," Lori Earl said, adding that they often shave their heads, do battles of the bands and make their own videos.

She said she uses speaking engagements to talk about the organization and "the impact of one life and how one person can make a difference even if that one person is sick."

They get letters and messages daily from the U.S., the U.K., Australia and other countries, all from people who want to know more about Esther and to tell her parents how much Esther inspired them to make an impact.

Before Esther died, Wayne Earl promised her three things: to get a tattoo, to write a book about her story and to follow her example. He's done (or is doing) all three.

Esther's biography is finished and expected to hit shelves this winter, but the title is still top secret, Wayne Earl said. He did, however, post a scene to his blog. Writing the book was painful, he said, but overall, it was therapeutic.

Because of the community surrounding Esther's memory, the book is expected to sell 25,000 to 50,000 copies, he said.

"For us, the entire gift to us and grace to us has been that we have so many people who loved Esther and shared her life," he said. "Not everybody gets that, you know?"