COURT HOUSE - An 11-year-old boy fighting a rare form of cancer has authored a book about his experiences, showing that "days can be rough, but there is a glimmer of hope with the sun and beach."
Kanen Keating-Wear, of Court House, was first diagnosed with Ewing sarcoma near the C2-C3 vertebrae, cancer that impacts the bones and soft tissue, when he was 5 years old. At the time, the tumor was inoperable and he underwent 11 months of chemo and 31 days of radiation.
After five years of no evidence of the disease, it returned.
In this recent instance, he went home from the hospital Jan. 26 after a 12-day stay following back surgery. Tests revealed a tumor on his spine; during surgery, his spine was broken, bones were removed, and his neck was fused with rods and pins from the C4-T4 vertebrae (the C4 vertebra is fourth from the top; the T4 is about mid-way up the spine).
He is awaiting word to participate in clinical trials at Memorial Sloan-Kettering Cancer Center, New York City, according to his mother, Lauren Keating-Wear.
"Keep your chin up has been Kanen's motto," said his mother. "I wanted us to write a book for others, hoping to show that some days can be rough, but there is the sun and beach. There is a ray of hope."
Keating-Wear's mother said she first heard of another family writing a book about their experiences about two years ago. "I thought we could write one," she said. "So I contacted the non-profit that published their book and after meeting Kanen, they said let's do it."
Books That Heal, founded by Michael Flatley, is a New York-based 501(c)(3) organization that helps pediatric patients battling chronic illnesses write and illustrate their own children's books to become published authors and illustrators. Flatley helps children who are undergoing treatment tell their stories and each book is a collaboration with the child and family.
Once the book is created, they host book-signing events to celebrate each child's story. Books That Heal handles all costs of editing and publishing the books, coordinates the book-signing events and sells the books for $25 each on its website and on Amazon.com.
Half of the royalties are given directly to the child and their family or the family foundation set up on behalf of the child. Twenty-five percent of the royalties go to the hospital or organization that refers the child to Books That Heal, if there is a referral. The remainder goes to Books That Heal to cover costs associated with the creation of each book.
In Keating-Wear's situation, the 11-year-old wrote the book with Flatley, and Keating Wear's sister, Kinley, helped with illustrations. Keating-Wear's mother also provided some family photos for the book and helped finesse the story.
"I made it rhyme because I know kids like stories that rhyme," she noted.
The story recalls the boy's time in Hawaii, where the family lived when Keating-Wear was first diagnosed. "One of our friends there had given Kanen some gemstones from the island," his mother said. "Hawaiians believe the land will take care of you, so we included this as part of our story."
Since the book was published last November, Kanen has been fighting a relapse of the disease. He had a tumor removed in the fall, followed by radiation on his head and brain. Scans after 10 weeks of treatment revealed the treatment didn't work. That's when the back surgery was required.
"We really haven't been up to doing any book-signing events," Keating-Wear's mother said. "Now we have to be ready for when we get the call for the clinical trial."
Half of the book's royalties will be put in a non-profit foundation the family is setting up called Hurrikanen Fights Back, a foundation to fight Ewing Sarcoma.
"Kanen is working on a second book," she noted. "His perspective is different this time around. He was 5 years old the first time. Now he's 11; he's angry and upset. However, he's trying to keep his chin up and fight this."
To contact Karen Knight, email email@example.com.