Feature Story

Ashley Elkins

10/26/09

Feature Story

Imagine spending most evenings on the computer in search for an answer doctors say you won’t find. Imagine spending hours at the hospital with your brother, hoping his pain will go away, or sitting at your child’s bedside so that you can give him another banana to still his unending hunger when he wakes up.

These are realities when someone is diagnosed with terminal cancer, like Caleb Spady in 2008. Caleb was diagnosed with cancer in his brainstem, a rare disease called diffuse intrinsic potine giloma. He was 10 years old. His mother Kim and father Ken were in need of answers when they received the news.

“When you are given this diagnosis you are literally given months,” Kim says.

Most children diagnosed with DiPG rarely live 12 months past diagnosis, but Caleb was an exception. He died in July.

Kim says that her other children have coped with their loss by thinking Caleb is in another place.

“When Luke and Seth say their prayers at night they tell God to say hi to Caleb for them, and that they miss him and wish they could play with Caleb,” Kim says. “It’s really a blessing that they are so strong in their faith.”

However, this is not always easy. The oldest son Jacob feels from time to time it is hard being the older brother who understands more.

“Sometimes Luke or Seth will ‘call’ Caleb’s old toys or clothes and it makes me mad, but I usually talk to them about it,” he said.

Kim acknowledges that they also struggle as parents.

“Some days Caleb’s absence is a dark shadow over our home,” Kim says. “Other days, the memory of having him with us brings us great joy.”

One such memory was the day the Make-A-Wish Foundation granted Caleb his request to be a Texas Ranger. He spent a day hanging out in the locker room, warming up at batting practice and making friends with Reggie Willis.

“His wish was a little unique because he wanted to ‘be’ a pro baseball player rather than just ‘meet’ his favorite player,” Kandy Parsons, director of donor relations for Make-A-Wish says. “The joy we brought to Caleb and his family represent the heart of what Make-A-Wish does.”

Kim and Ken are grateful to Make-A-Wish for the happiness they brought Caleb, and the time they spent together as a family.

“When Caleb was granted his wish I was glad because he had always wanted to do this even before he was sick,” Jacob says. “Sometimes I felt jealous of the things that Caleb got, but then I thought of why he was getting them and that feeling went away.”

Since Caleb’s passing the Spady family has joined ‘Just One More Day,’ an organization that raises awareness and funding for DIPG research. Kim volunteers full time.

“While I want to find a cure for this terrible disease, I know what is the most important thing to me—family,” Kim says. “It sounds trite but this whole experience has made us realize our priorities, and this has made us more intentional with our time.”