Why My Main Character Has Cancer

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My daughter, Ana, in 2013 after losing most of her hair from chemotherapy

I self-published my first novel in May 2014 after submitting it to roughly thirty agents. I heard back from about half of them, mostly with variations of this sentence, “We like your writing, but the book is not for us.” It was disheartening, but not unexpected.

I knew the book was going to be a hard sell because one of the main characters — Grace — is an 11-year-old girl with cancer.

Grace was inspired my daughter, Ana, who was diagnosed with a rare, malignant liver tumor a few months after her 11th birthday. Ana spent many weeks in the hospital, underwent chemotherapy and endured a litany of scans and other procedures before having a liver transplant in February 2013.

My reason for creating the character of Grace was simple. I wanted to cast my daughter in the role of a heroic protagonist even though she was sick.

Most heroes are healthy.
During Ana’s initial 40-day hospital she’d watched The Hunger Games over and over again. It was September, and she wanted to be Katniss for Halloween.

At the time, her hair reached the middle of her back. She couldn’t wait to braid it like Katniss, but she started chemotherapy in early October. Two weeks later she lost her hair. It was right before her school’s Halloween dance. She was heartbroken. I convinced her to wear a clip-on braid for the dance, but it wasn’t the same.

The main characters in my daughter’s favorite books and movies were all strong and healthy. Katniss, Tris (Divergent), Thomas (The Maze Runner), and even Harry Potter. While all these characters were plagued with challenges that included poverty, loss of one or both of their parents, violence, and neglect, they had one key thing in common. They were whole (and they had a full head of hair.)

How can a child who has a central line in their chest go on a quest? How can a kid who has lost her liver and must take medication to stay alive save the world? It’s a logistical nightmare, but I knew it could be done.

I was compelled to figure it out. I created a world called Arkomo that could only be reached from the hospital and a princess from this world who was driven to find a friend.

The characters in my book came together through shared loneliness. Keeping things in the setting of the hospital enabled me to work around my main characters’ failing health. Grace can only get to Arkomo from the hospital. And Sorel (the princess) can only enter our world from within the hospital.

The ancillary characters (e.g., the adults) are extremely important to the plot. When a child is sick, she needs help from her parents, from doctors, and from other adults. Thus, I had to abandon the old trope of the dead or absent parent, because otherwise my main character couldn’t have survived her adventure.

So it’s out there — a fantasy featuring child who loses her hair, gets chemotherapy, and can barely walk by the end of her adventure, but still saves the world. It remains a tough sell. The prevailing message from the agents who rejected the novel was that there was no market for a fantasy book featuring a child with cancer. I think they’re wrong.

It’s important to portray sick kids with authenticity.
Writing this book was my attempt to honor my daughter and the other children I met during the years that Ana was sick. It was about seeing these kids authentically and honoring how hard they fight for each day, each moment, and each small triumph. It was also about letting them see themselves as heroes — without hair, without health, and without the guarantee of tomorrow.

My daughter used to roll her eyes when people called her brave. She’d say, “what choice do I have?”

She endured the blood draws and the medication, the constant scans and the surgeries — all so she could have another day.

She lived with scars and pain for as long as she could, looking and sounding like a normal teenager, but forced to be twice as strong. She died on March 22, 2017, just six weeks shy of her 16th birthday.

I want my writing to be a mirror for kids like Ana who will see themselves in Grace and recognize how strong they are — how truly heroic.

Kids with cancer don’t always get a happily ever after, but you can end the story the way you want to when it’s fiction. This is why I cast Grace in an epic adventure and, ultimately, gave her the ending I so desperately wanted for Ana.

Occasional poet. Writer of sad essays. Novelist. Birder and amateur photographer. I enjoy trees.

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