QUINCY — When Esther Earl was too sick to walk upstairs because of the advanced state of her thyroid cancer, her parents, Lori and Wayne Earl, turned their dining room into a bedroom and added a temporary wall so that Esther, then 15, could have some privacy.
More than three years after Esther’s 2010 death, the dining room table is back where it belongs, but there are reminders of her everywhere. Her Harry Potter books are still in the china cabinet, as is her Harry Potter snow globe and her teddy bear.
Filed in the cabinet with the Potters are two books that have become Esther’s legacy. One is the 2012 John Green novel “The Fault in Our Stars,” a worldwide hit that’s sold more than 3 million print copies, and as of Friday, was number one on Amazon’s Best Sellers list. Esther, who became an Internet celebrity as she blogged about her life and her disease, inspired the novel, and Green dedicated “The Fault in Our Stars” “To Esther Earl.”
Now Esther has inspired a second book, “This Star Won’t Go Out: The Life & Words of Esther Grace Earl,” a scrapbook-like biography of Esther told through her own drawings, diary entries, handwritten notes, stories from her family, and even a letter from one of her doctors.
Esther’s family intends for the book, which was released this week, to be a celebration of the way Esther lived. “She said, I’m going to be alive until I’m dead,” Wayne Earl said on a recent snowy Sunday, as he sat at the dining room table, the book in front of him.
“This little kid taught us how to take hold of life and accept it,” added Esther’s mom, Lori, her laptop nearby so that she could show off the Tumblr for “This Star Won’t Go Out,” which invites fans to share stories and pictures about the book.
“This Star Won’t Go Out” started as a straightforward biography. A year before Esther’s death she and her dad made a pact: Whoever lived longer would write about the other. When Esther died in 2010, Wayne Earl poured all of his efforts into writing Esther’s story.
‘This little kid taught us how to take hold of life and accept it.’LORI EARL, on her daughter Esther
It begins in Beverly, where Esther was born. Her father was working as a minister at Ward Hill Congregational Church in Haverhill.
For nearly a decade, the Earls, self-described wanderers, moved between Saudi Arabia, Massachusetts, and France, as their family eventually grew to five children. It was in France on Thanksgiving Day in 2006, that Esther was diagnosed with pediatric thyroid cancer. She began treatment at a children’s hospital in Marseille, but in 2007, when the family was back in Massachusetts for a visit, they sought a second opinion at Boston Children’s Hospital. There they met endocrinologist Dr. Jessica R. Smith, who told the Earls that Esther’s cancer was far more advanced than they thought.
Smith knew Esther would die from the disease.
“I took a look at their records, and I took a look at her history and her scan, and it was frightening,” Smith said.
The Earls decided then to stay in Boston. The family settled into a rental in Quincy, and Esther began more aggressive treatment. She was able to attend locals schools, but as she grew sicker, she spent more time at home and needed oxygen to help her breathe. She also started to embrace the growing world of social media and began to make a name for herself online. She posted videos of her family and blogged about everything from Harry Potter to her treatment. She would get excited when a video was shared and seen by a few hundred people.
About three years after she was diagnosed, she met Green, already a young adult author with a big fan base that included Esther. They met at a Harry Potter fan convention in Boston, developing a friendship — the famous author and the teen with the terminal illness.
He told his other fans about her videos and online work, turning her into even more of an Internet phenomenon.
In the introduction to “This Star Won’t Go Out,” he explains what it was like to meet her and then lose her. He also explains the scope of the genuine friendships she made online.
Green writes, “I dislike the phrase ‘Internet friends,’ because it implies that people you know online aren’t really your friends, that somehow the friendship is less real or meaningful to you because it happens through Skype or text messages. The measure of a friendship is not its physicality but its significance.”
The author, whose “The Fault in Our Stars” will be released as a film this June, has made it clear that his novel’s heroine, Hazel, is not a re-creation of Esther, but Smith, the endocrinologist who got to know her so well, disagrees. Hazel might have a different story, but she has Esther’s voice.
“It took me a year and a half to be able to read it,” Smith says. “It is so Esther. He did such an amazing job capturing her voice. I know John Green will deny it up and down, but it was her.”
Esther’s sister Evangeline says the same thing. Despite critics of the book who say that Green’s characters are too clever and self-aware for teenagers, Esther, says her sister, really was that articulate.
“It was really hard to read because I just kept thinking how similar Hazel was to Esther — because of how she spoke,” Evangeline said.
It was that voice that prompted Dutton Juvenile, the publisher, to suggest to Esther’s parents that instead of publishing the biography of Esther that Wayne Earl was writing, they let Esther speak for herself. The Earls began collecting all of Esther’s writing for the book.
There are doodles and handwritten letters. There are detailed journals of her thoughts about treatment. There are her drawings and snapshots.
As Green told the Globe via e-mail, “I can hear Esther’s voice in every journal entry. Reading that book for the first time was so strange and lovely, because I felt like she was around again. Esther’s voice was so unique, and it comes through magnificently in her writing: her empathy and wit and sadness and sweetness are all on the page.”
Wellesley Books will celebrate the release of “This Star Won’t Go Out” on Saturday at 7 p.m. The event benefits the “This Star Won’t Go Out” foundation, which helps families who have children with life-threatening cancer.
Lori and Wayne Earl also want to get the book in schools as part of the curriculum.
“It’s not just teens,” Wayne Earl said. “I think parents should read it. Caregivers should read it. Parents who have kids who aren’t sick should read it.”
The Earls and her doctor agree that one of the most poignant essays in the book is the letter Esther wrote to herself through futureme.org, a website that allows you to send a note to yourself to be delivered in the future. More than a year after her death an unexpected e-mail arrived in Lori and Wayne Earl’s inbox.
It was written by Esther, when she was 14, for her 17-year-old self. It is a message complete with the emoticons and informal punctuation of a teen, but a teen suffering from thyroid cancer.
“future me, I hope you’re doing better than present me. I hope that if you still have your cancer, at least it will be gone enough for you to be off oxygen. and if it’s not just remember to use that Ocean Spray to keep your nostrils moist :] and I hope you’ve tried to talk to more people that also have cancer. in the world, there’s not ONLY boring people with cancer. there are people that are awesome, but maybe you just haven’t met them yet. you never will if you don’t try.”