This Star Won’t Go Out: The Life and Words of Esther Grace Earl
Esther Earl, Wayne Earl & Lori Earl
Penguin Books Aus
Copy courtesy of the publisher
I knew very little about Esther Earl before I received this book for review. I’ve read YA author John Green’s The Fault In Our Stars and I’ve seen the dedication and heard a few bits and pieces around on the internet but I’m not really a nerdfighter and I don’t watch youtube vlogs so really, most of who and what she was, was a mystery. That wasn’t necessarily a bad thing because I went into this only knowing one tragic thing about her and that was that she died of thyroid cancer at a young age. The rest I was able to discern for myself as I read this.
This book is a combination of Esther’s private diary and online journal entries, scripts of her youtube videos, blog accounts from her parents on how she was doing and the experiences of those who knew her, mostly online through the strong presence she had with a group known as Catitude. The book reads like one big diary, just contributed to by different people and it’s colour coded – Esther’s parts are white, Wayne and Lori’s blog entries are orange and other contributors are green. There are drawings, photocopies of letters Esther wrote her parents, chat transcripts and other bits and pieces that all help to flesh out both Esther herself and also her story.
Whilst living abroad with her family in France, Esther, then 12 found herself unable to participate in much physical activity, becoming out of breath. A simple scan for pneumonia came back negative but also revealed that Esther had tumors in her lungs. Further investigation revealed that she had thyroid cancer, rarely ever seen in children, that had already metastasized into her lungs. From the beginning, it was clear that Esther’s treatment would be about prolonging her life and making her as comfortable as possible. She was never going to be completely cured and the doctors didn’t know if she’d live sixty days or sixty years. Only time would tell. Following a thyroidectomy and about 6-7 months of treatment, the family returned to the US and Esther became a patient at Boston Children’s Hospital. She endured a vigorous medical campaign to wage battle against her tumors: frequent CT scans and MRI’s, radiation therapy, chemotherapy, various medications and for most of the time she was reliant on oxygen 24 hours a day to help her struggling lungs. She fought hard for almost 4 years, finally losing her battle in August 2010, aged 16.
By then, Esther had embraced the internet and all it involved, making friends, creating youtube videos and dispensing advice. She kept her terminal illness a secret for a long time but finally confided in some of her closest friends and her “Wish” from the Make A Wish Foundation was to have several of them flown to Boston for a weekend of getting to know each other IRL (in real life). Author John Green also joined them, paying out of his own pocket, having met Esther before at an event. He was writing a story about teen cancer when he met her and was wary of being seen to be ‘using her’ for information or to pad out his story but the two quickly developed a rapport. Green states in the book that he’s amazed at the success The Fault In Our Stars has found but also sad that the one person he desperately wanted to read it, never will. Esther died before the book was published.
Whilst reading this, there were times when I forgot just how young Esther was when she was going through all of this. A lot of the entries are when she is 14 or 15 and she reads as so much older. She is bright, funny, mature and although prone to the occasional bout of questioning why, faces her life sentence with incredible bravery. She questions what she’s doing with her life, always wanting to do more. Her parents have done work overseas (they’d lived in Saudi Arabia before going to France) and it was obvious she had a strong social conscience. At the same time, she’s also a young teenage girl who just wants to be kissed by a boy!
There’s no doubt that in her very short life, Esther made an impact. The “Nerdfighteria” celebrate Esther Day on Esther’s birthday in August every year and it’s a reminder for people to “vocalise their love for friends and family”, a topic that was chosen by Esther herself. A foundation in her memory entitled This Star Won’t Go Out also works to provide gifts with no strings attached for families who are suffering with a child diagnosed with cancer. Since 2011, the foundation has donated some 75 gifts totally $125,000 to help families suffering from financial hardship related to childhood cancer (taken from here). Given how much Esther wanted to do things to help people, I think she’d be proud of the foundation and what it is achieving, especially as the financial and emotional impact of her illness on her family was something she thought about often and voiced in her diary.
This Star Won’t Go Out is one of those reads that puts a lot of things into perspective. Although I’ve been a huge fan of YA for a long time now, I’m also a mother with two young children and sometimes I can find myself relating more to the parents than the teens these days! Reading this makes me admire not only Esther but also her parents, who buried their middle child and still receive messages of love for her every day, years later. They kept a promise to Esther with this book chronicling her life.
Book #31 of 2014