As a little girl, she was cheerful, compassionate and spunky, with wispy blonde, haphazard hair that sparked comments from strangers. Her hair settled down as she grew up, but her spunk and empathy remained.Lori and Wayne Earl are pictured with their children, Abby, Evangeline, Graham, Abraham and Esther, in a family portrait taken before Esther died of a rare form of thyroid cancer in August 2010 at age 16. (Submitted photo courtesy the Earl family)

Esther Grace Earl had her own YouTube channel with thousands of followers on her daily vlogs (video blogs) as well as several chat groups; and she meticulously chronicled her life in pictures and words in her journals, much of it while fettered to an oxygen tank.

At 16, Esther died of a rare form of thyroid cancer in August 2010.  

She became the inspiration for the best-selling young adult novel, “The Fault in our Stars,” and movie of the same name.

Esther’s parents, Lori and Wayne Earl, will be the speakers at the next Forum on Faith and Work, hosted by the St. Clare Center for Catholic Life, Friday, Oct. 24, at the Italian Community Center.

If you want to go

“Living a Life of Awesome”
Friday, Oct. 24
Italian Community Center
7:15 to 9 a.m.
Registration fee is $25 per person
or $200 per table. 
Registration includes a plated breakfast. 
For information, contact Mary Foley at (414) 410-4405
Or register online

In a telephone interview with the Catholic Herald, they explained Esther was the conduit between their older daughters, Abby and Evangeline, and two younger sons, Graham and Abraham. She was positive, cheerful and optimistic, but, according to her parents, like anyone going through similar turmoil, she struggled with her diagnosis. 

“She was quite a celebrity in the You Tube world, but she did get down at times,” admitted Lori. “She had bad days, but was the first to say she was a normal kid and had a positive approach to life in her writings and just with the way she was. There were times, though, that she had very normal reactions to things, such as her wanting us to help her with something and when we told her we were too tired. She would yell out, ‘Well, I have cancer!’”

Strong faith carried her through

Though she felt as if she were losing hope at times, Esther had a strong faith that sustained her and a healthy sense of humor, often offering virtual tours of the family refrigerator, and showing off her oxygen tank, nicknamed “Denmark,” explaining how she sticks the oxygen tubes “… in my nostrils, which are located on your nose.” 

“But most of all, she made the best of what she was given and tried not to complain too much,” said Wayne. “She focused on the gratitude.”

In 2006, she was diagnosed with metastasized papillary thyroid cancer while the family was living in Marseille, France. The cancer had spread to her lungs. After a thyroidectomy and seven months of treatment, the family moved back to New England for continued treatment at Boston Children’s Hospital and the Jimmy Fund Clinic. She endured numerous treatments, exams, medications and hospitalization. 

Lori and Wayne Earl founded This Star Won’t Go Out in 2011, a non-profit foundation serving families with children diagnosed with life-threatening cancer. The Earls will speak at the Oct. 24 Forum on Faith and Work, hosted by the St. Clare Center for Catholic Life, at the Italian Community Center, Milwaukee. (Submitted photo courtesy the Earl family)

As Esther’s cancer progressed, she found it more difficult to breathe and relied on continuous oxygen. She had trouble ascending the stairs to her second floor bedroom, so Wayne and Lori cleared the dining room and it became Esther’s bedroom and hub to the outside world. 

There she connected with online friends, including Harry Potter fans like herself, and embraced her self-proclaimed nerdiness. It was also there that she became acquainted with one of her favorite young adult authors, John Green, who had quite an Internet presence himself. In 2009, they met at a convention of Harry Potter fans in Boston, where Green’s brother, Hank, a singer/songwriter, was performing. 

Inspiration for ‘The Fault in our Stars’

The two became close and Esther became the inspiration for the best-selling young adult novel, “The Fault in our Stars,” and movie of the same name. Lori and Wayne have seen the movie several times and while it isn’t true to Esther’s story, it captured her spirit, they said. 

“I saw John Green this summer and talked to him about the movie,” said Lori. “He wanted to make sure I enjoyed it. I was worried that I would see the story and get her back and then lose her all over again. It was a tremendous honor to see the film and it really does stand on its own. Esther would have loved it, and it has given us a platform for our foundation.”

Founded in 2011, This Star Won’t Go Out is a non-profit foundation serving families with children diagnosed with life-threatening cancer. To date, their foundation has given away more than $200,000 to families in need. 

Foundation aids families fighting cancer

“Beginning the foundation was a means to relieve some of the stress of losing Esther,” explained Lori. “We wanted to help other parents going through similar situations as we did. So often the charities out there will help with small sums, such as gas reimbursement, but what happens when you lose work because you are in the hospital all time or your hours are cut back? We wanted to find ways to cover practical things like paying rent, electric bills, and things like that.”

The grassroots foundation, which has no corporate sponsorship yet, presents monetary gifts between $1,000-2,000 to families struggling because of childhood cancer. Surprisingly, the majority of donors have come from children and young adults devoted to carrying on Esther’s legacy. 

“A lot of the followers love John Green, such as the nerdfighters (quirky videos developed by John Green and his brother) and the Harry Potter Alliance,” said Lori. “It has become a great social activism group for young people and there are kids who host fundraisers, walks, events and sell bracelets. This is empowering for young people to make a difference in the lives of others. Young kids are wonderful and want to make a difference and find their purpose in life.”

The Earls decided to further honor Esther with a book of their own. “This Star Won’t Go Out: The Life & Words of Easter Grace Earl,” a collection of Esther’s journal entries, letters, online chat transcripts with friends, and other correspondence.

Esther taught them to be ‘awesome’

The title of their Oct. 24 presentation, “Living a Life of Awesome,” comes from a phrase coined by Esther as she reminded everyone not to forget to be awesome in her vlogs. 

“We want our message to be helpful; our greatest wish is that the reader of our book and our audience will walk away with a deeper appreciation for the mystery of life, and the hope that comes with loving,” said Wayne, who delved into writing to fulfill Esther’s desire to become an author. “We have learned from Esther on what it means to be awesome and hold her up as an example. If we look at the saints, we see they have lived amazing lives and they give us examples of how we can make a difference and are meant to be. That is the core message of our talks, and primarily, there is especially the hope of love in the midst of our pain. That is the underlying theme.” 

Faith carries family through loss

Lori and Wayne, who are both educators at Quincy College in Massachusetts, relied on their faith to get them through the difficult decisions and the inevitable loss of their daughter. Wayne is an ordained Congregational minister and Esther grew up in the church. He said faith was integral to her life. 

“I was her pastor, and our faith has been important to all of us; she went to church whether she liked it or not,” he joked, “Actually, she really liked it, and she was a very public and extroverted person and was happy to share her faith with everyone. When you read her book, there is a part about her dependence on God. Esther knew she couldn’t do it by herself and although her family and her friends loved her and were with her, she knew she was standing alone and understood that there is nothing between death and life except God, and she took great comfort in that.”

Esther’s journal contains prayers and Scriptural references. She questions God and admits she doesn’t understand. Her writings also include a passage from the biblical Esther, which demonstrates her courage and resolution to place her life in God’s hands: “If I have found favor with you, O king, and if it pleases your majesty—grant me my life — this my petition” Est 8:3.  Wayne explained that while his daughter wanted to live, she knew from all of the doctors that the outcome might not be what she expected.

“We know that knowledge is power and information is power, and we always tried to include Esther in decision-making,” said Wayne. “She knew more about her diagnosis and body than we did. We are privileged in that so many shared her story and grief with us, and we find that too many people have no one to share stories with, and carry their grief alone and the burden is heavier for them. 

“Every day we get letters from girls and boys. They tell us they finished reading Esther’s story and that they felt that they would’ve been best friends with her. This is a way of conveying her heart and emotions and ideas the people resonate with and in facing death we have used it as an opportunity to talk about facing life and to motivate ourselves to live more fully and with a deeper appreciation.”

In the movie, Hazel Grace Lancaster is an only child who worries about her family and how they will cope when she was gone. She feels her parents will fall apart and have nothing left for which to live.

Her mother says, “Oh, Hazel, you of all people should know it is possible to live with pain.” 

Wayne and Lori are in pain, but both know they must go on. 

“Wayne threw himself into the bio of Esther which turned into ‘The Star will Go On,’ and I just threw myself into the foundation because we wanted to make a difference in the lives of other families,” said Lori. “But we do have pain. Every time we give a talk, we cry.”

Wayne agreed.

“It is important to leave some sort of legacy. How do we live our life? And if you write just one word, make it profound. Esther knew the power of words and she wanted to make a difference.”