As Tim Truax sat by his granddaughter’s side on Akron Children’s inpatient cancer floor, he listened to doctors and nurses and observed 6-year-old Kylie’s responses to the strange things happening to her.
He started taking notes and writing a poem to help her make sense of childhood cancer, what was happening with blood tests, CT scans, X-rays and the never ending entourage of caregivers entering her room.
“I realized that she needed the ‘why’ and so did her parents and grandparents. And if we didn’t know what a port was and how it administers chemotherapy to the body, there must be other children and families in our same situation trying to understand this, too,” Tim said. “So my handwritten notes moved to my laptop and my poem became a children’s picture book.”
Kylie Rose Kickin’ Cancer is a 26-page paperback featuring illustrations by Bree Young and photos of Kylie and some of her own thoughts. For example, next to a photo of Kylie undergoing radiation is a note in her own handwriting that says, “I had to stay still.”
The book is available through Amazon.com for $10. A portion of the proceeds will be donated to pediatric cancer organizations and used to purchase copies for children’s hospitals.
Tim has donated 20 copies to Akron Children’s Showers Family Center for Childhood Cancer and Blood Disorders and has already sent copies to 30 other children’s hospitals across the country.
“The thing children, and most adults, fear the most is the unknown,” said Dr. Jeff Hord, director of pediatric hematology-oncology at Akron Children’s. “This book about Kylie’s journey points out real procedures, treatments and equipment that children with cancer are likely to encounter. Some parents have difficulty figuring out what they should say to their child after a diagnosis is made. Reading this book together can help facilitate communication at a difficult time. I think it will be very helpful in reducing the fear of the unknown.”
Getting a cancer diagnosis for your child
A cancer diagnosis in the family was the furthest thing from the minds of Carrie and Eric Jacobs, of Copley, last year.
The family had welcomed their third child, Blake, and Kylie and her 4-year-old sister, Emmie, were typical, healthy busy young girls focused on play, friends and school.
Kylie, who has a special love of all things ballet, attended kindergarten at Arrowhead Elementary School.
In early December, Kylie began having trouble falling asleep. She just couldn’t find a comfortable position. Her parents assumed it was growing pains. But through the holiday season, the pain didn’t go away and Kylie’s appetite began to change.
Soon, swelling around the area of her stomach became noticeable and Kylie came to Akron Children’s Hospital for a CT scan.
By early January, she was diagnosed with a Wilms tumor – located in a kidney and the size of a cantaloupe. The treatment plan calls for chemotherapy to first shrink the tumor and then the surgical removal of it and the diseased kidney.
The surgery would be followed with radiation and more chemotherapy.
“It was a difficult time,” said Carrie. “I was still on my maternity leave. We were fortunate to have grandparents helping us. My dad and grandma Paula had the night shift. They stayed with Kylie in her hospital room and told her stories when Eric and I went home to put Emmie and Blake to bed. Those hours spent at night with Kylie are the basis of this book and that is something very special – something we hope will help others.”
Tim wanted to complete the book in time for “Kylie Rose’s Run, a 5k and Fun Run held this past August that raised more than $15,000 for Akron Children’s cancer program. When he finished the work on it, Kylie had not completed her treatment.
The family has since learned Kylie is cancer free and has an excellent prognosis.