CHANDLER, AZ — Cancer is devastating at any age but, when a child is diagnosed it changes the entire family dynamic. If there are siblings, it's easy for them to get lost in the turmoil of treatment, but there is a balance that can and needs to be found for them.
Ben Gokee was 11 years old when his little brother Cooper was diagnosed with leukemia, after a random fall at home.
"He was my little buddy," says Ben. "Obviously, our world was turned upside down."
He remembers the family would drive about 45 minutes from Maricopa to Phoenix Children's for Cooper's treatment, sometimes several times a week over the course of four years. Ben was in 6th grade at the time, desperate to share but he found it hard to connect with classmates. His brother, now with a chemo port, meant they couldn't play and wrestle the same way they were used to. Ben says he struggled, but didn't want to be a burden.
"I said, 'I'm gonna put how I feel on the sidelines and not bring this up to my parents,' and I wish I'd never done that because I know my parents would've been like, 'Of course we want to know what's going on at school, of course, we want to know about your morning.'"
He says that's his biggest piece of advice for families, acknowledge feelings and worries so you can work through it, together.
Children's Cancer Network has more tips:
- Keep up routines as best you can. If the siblings play sports, let them keep going. Continue to coordinate visits with friends and build a network of support.
- Help the kids stay in touch. If one sibling is in the hospital during treatment help the others text or Facetime with them.
- Connect daily with each kid so they don't feel forgotten. Once a week try to find an activity to share with them.
It was the individual connection from the Children's Cancer Network that Ben says was the most transformative for him.
"They sent me a package and it was a package just for me. Growing up with a sibling with cancer, that's not often the case, you might get something when they do but this was, someone saw me. CCN saw me and it was the most special I felt through the entire process," he remembers.
It was such an impactful gesture, 11 years later Ben now works for CCN helping create family support programs. Paying it forward for others navigating childhood cancer and offering hope every time he shares an update about his not-so-little brother.
"Cooper's going great. He's 19, living his best life. He's healthy. "
Children's Cancer Network is based in Chandler and will connect families navigating cancer to a wide range of resources. They are also celebrating survivors and raising money to help support these programs with the annual run to fight children's cancer, which is Saturday, May 6. More information can be found online here.
