Our Journey With The Star That Won't Go Out

In 1994, a beautiful, fluffy-haired daughter joined our family.  Esther quickly demonstrated her easy-going, cheerful disposition, and her two older sisters adored her.  Nineteen months later her little brother joined us, and she quickly took on the role of friend--and then mentor, as it became clear that his development was delayed. With his significant speech issues, Esther became her brother’s interpreter and champion.  When Graham was diagnosed with Klinefelter Syndrome, our family energies went into making sure that we advocated for him in the special education system, and that we gave him every advantage of a loving, supportive family.  The girls were marvelous at including him in their play activities--I remember many a time when he took the role of son, puppy, or maid as they played house!  We set our goal to help him achieve independence in as much of life as possible, but knew as he progressed that some level of care would fall to us for the rest of our lives. We adjusted gears and expectations, continued to research and advocate, and moved forward.

Deciding that the family unit was adequate support for Graham, we went ahead and followed our dream to expose our children to life outside the USA, moving to Saudi Arabia where my husband taught ESL for three years.  While we lacked some of the sophisticated support from speech and physical therapists, we had oodles of hours together for outings to zoos, amusement parks, shopping expeditions, and trips to the ocean or on jetskis and dune buggies- and in that culture, Graham was a favored child, primarily because he was the only son!!  

 

We returned to Massachusetts for a few years, had another surprise addition to our family, and then threw caution to the wind to follow a dream to work with a non-profit in France. Our children jumped into the French local schools (except for Graham, who had an English-speaking tutor at home), and my husband and I studied French in an intensive immersion program.  We moved closer to our target city of Marseille, prepared to make this work for the long term.  As summer moved into fall, our inexhaustible Esther became easily fatigued, and began to cough.  Fearing pneumonia or TB, we took her in for xrays.  On Thanksgiving day of 2006, we were told our 12-year-old daughter had metastasized papillary thyroid cancer.  Surgery followed, and then the ongoing care of radioiodine treatments to poison the cancer cells in her lungs.  Overwhelmed and needing more support, we returned to Boston for her care.

 

Esther received amazing care at Boston Children’s Hospital and later Dana-Farber’s Jimmy Fund Clinic. We felt so fortunate to have caring and creative doctors and nurses, and were blessed to live in a state that had insurance plans to cover our medical expenses.  Financial stresses still crept in with lost work, and we struggled to balance the needs of our children--when Esther was diagnosed, our other kids were 17, 15, 10, and 3.  Advocacy for Graham got pushed to a back burner, because we only had so much time and energy.  We worked hard to be a family, and to include everyone in our new normal.  When hospital stays took us from home, my husband and I took turns so that we could be with her.  We did things on Esther’s bucket list like eating lobster, letting her start a Video Blog channel,
dragging home a free piano, and indulging her need for books.  So when she winsomely asked about an upcoming Harry Potter fandom convention in Boston, we coughed up the fee and agreed to take her daily to participate.

 

And that decision changed her life.  Esther met John Green, the young adult author
that she idolized.  They became friends and interacted often in the months ahead. 
When her Make-A-Wish dream of visiting her online friends by traveling around the country in an RV became too much for her health, John and his brother Hank helped bring some of those friends to her in Boston, where Make-A-Wish sponsored an amazing 4th of July weekend bash replete with a Wizard Wrock show, firework party overlooking the Charles River, Limo rides to the theatre, a luncheon cruise on the Boston Harbor, and days spent in a hotel with heart friends that she had never met before in real life.  John joined the party for a day, and history cannot adequately recount the joy of that day!

 

We lost our Esther a little more than seven weeks later.  They were weeks packed with loving and living and administering medical care, and chronic pain, and
laughter wherever we could fit it in. We were carried by many arms around us
who hosted a fundraiser, brought us food, sent Esther gifts, and cared for us.  We were isolated in our little world that illness creates, yet Esther always fought to live beyond that limitation.  She invited a few significant friends for her 16th birthday.  She made videos and wrote in her journals.  She was part of the inspiration that raised $250,000 for her favorite charity, The HP Alliance. She colored with her brothers, and wrote a 12-page letter for Father’s Day.  And she got to see the creation of a holiday of love, named in her honor by the Green brothers.

After her funeral, we realized that money had started to trickle in over purchases of the bracelet designed for Esther’s Make-A-Wish weekend.  It seemed only natural to start a fund to give those monies away to help other families going through the kind of stress we had experienced during Esther’s four years of treatment.  This Star Won’t Go Out was birthed, and today continues to make an impact for families faced with the diagnosis of a child with cancer through financial grants and family support.  

I know that Esther couldn’t have imagined the success of the book that John Green wrote and dedicated to her, but she wouldn’t have been surprised that others found his writing irresistible.  And somehow it feels like she might be smiling about the book of her journals, fiction, letters, and artwork published in January 2014--after all, in second grade she wrote that she intended to become an author.  Today, her words continue to inspire, motivate, and encourage teens and
adults alike with her message to love others, and to live life fully, no matter the shortness or length of days.  

Four years ago this week she died and, as might be expected, Esther’s death has been unimaginably difficult on all of us. Although she is irreplaceable (In fact, she is still very much our daughter and sister, even in her absence), we have continued to build a different kind of family, with perhaps the most painful evidence seen in the effect her death has had on her little brothers, especially Graham who has filled his room with her pictures and on Abraham who will know her more as ‘someone who went away’ rather than as someone who was very much here. Still, we are proud of the way our children continue to cherish their sister and the way each of them has dedicated their lives to valuing what was important to her. That’s just one small piece of her pretty amazing legacy.


Written by: Lori Earl

Lori is the Director of This Star Won't Go Out, a non-profit that financially assists families with a child living with cancer. In 2011, the Earl Family founded TSWGO in honor of their daughter Esther, who died at age 16, four years after her diagnosis of thyroid cancer. 

Lori works as an Instructor and Student Success Coach at Quincy College. She is a certified English teacher, with degrees in Psychology and Intercultural Studies. Lori is passionate about encouraging others to move towards wholeness, live life fully, and make a difference in their world. Asked what is most important to her, Lori is quick to say it’s her family. She and her husband Wayne have two other grown daughters, and two sons, one in high school and one in elementary school.