Written by Lynne Golodner
5-year-old Cailen is smart. He is high energy, likes to camp and spend time with family. Just the other day, he asked his parents, Cody and Aly, what 3x3x3 equals.
He’s so smart that what he first described as having sand in his ear, he now knows, is a rare and aggressive form of cancer called embryonal rhabdomyosarcoma. And he knows enough to dislike the way it has wormed its way into his life, keeping him from his friends at day care.
But after making new friends through Kids Kicking Cancer (KKC), Cailen has a different perspective. And so do his parents.
“He is able to calm himself down, think through and process his emotions better,” say his parents.
“Because he can’t be in school or day care right now, he’s got other kids and interactions besides just family thanks to KKC.
When the doctor called with the diagnosis last January, “We were going crazy at home. We couldn’t do anything from here,” Cody recalls.
They worked fast to schedule treatments at University of Michigan’s C.S. Mott Children’s Hospital in Ann Arbor and Beaumont Children’s Hospital in Royal Oak. The family lives three hours away from where they can receive treatment for Cailen, so to ensure he had the best care, they packed up their essentials and lived out of suitcases for weeks on end.
Thankfully, during Cailen’s treatments they met a family whose child was also undergoing radiation, and from them, learned about Kids Kicking Cancer. That auspicious connection has turned out to be a game-changer.
“When we were at radiation in Royal Oak, we went to KKC’s Therapeutic Martial Arts classes in Southfield every week,” Cody says. Cailen had his belting ceremony recently and now, he runs in to class, eager to see his friends and connect with Sensei Peter, Sensei Michael and Sensei Talia. When they’re home, Cailen stays connected with KKC virtually. The program and community have been a lifeline for not only Cailen, but his family, too.
Before the diagnosis, the family had applied to become foster parents. Then, Aly found out she was pregnant. They put fostering on hold and prepared to welcome their daughter, Alyssa, who was born just two weeks before Cailen’s radiation was set to begin. “Four days after she was born, we were in Royal Oak for proton therapy, and spent the first seven to eight weeks of her life in a hotel room,” Cody says.
Aly is a hospice social worker, and Cody is a category manager for a chain of gas stations. His employers have been incredibly understanding. They let him work from home, which has taught him what really matters.
“Now, I don’t put as much importance on things like work and unnecessary distractions during the day,” he says. “Just having this go on tells you what is actually important. Alyssa and Cailen are home with me most days, and I spend more time with them than ever.”
“As a family, we were not used to planning activities,” Aly says. “Now, we’re just jumping on it, trying to live day to day.”
They’ve had support from other sources, too. Since they must avoid playgrounds to protect Cailen from exposure, his day care donated money to build a playscape in the family’s backyard. And they thank their lucky stars that they made the decision during the pandemic to leave Grand Rapids to move closer to family – who now are nearby to offer support.
“Cailen’s responding well to treatments. Proton therapy finished in June. The doctors are happy with his scans,” Cody says. “The tumor is shrinking.” Still, the family goes for weekly chemo treatments and a few weeks ago, when Cailen underwent an MRI, he’d had more than enough.
“He was yelling in the car, ‘I hate cancer,’” Cody says. That’s when they realized he understood that the sand in his ear had a name: cancer.
“We don’t think he knows the depth of what cancer is or what ultimately could happen,” Cody notes.
The doctors are optimistic, though. They’ve told Cody and Aly that they expect to eradicate the cancer entirely, and the young parents hope the doctors are right. They’ve remained anchored thanks to the support and friendship they’ve found at KKC.
“The KKC Heroes Circle community is so strong,” Aly says. “We know we can contact any of the staff, talk through anything, and they’re always willing to go to the hospital to see Cailen.”
“The kids have so much fun at class that when you go there, you just watch them and be present with them and it’s so worth it,” Cody adds.
In the beginning, Aly says they felt “very alone – because how many kids actually have cancer?”
“We were by ourselves. It was nice to get connected with the KKC Heroes Circle community and find out about the support that is available and that we’re not alone,” she adds.
“Involvement with KKC has also taught us more about Cailen’s specific diagnosis and about the pediatric cancer demographic,” Cody notes. Today, the family feels supported, and part of a community that has their back. They know that no matter what happens, there are caring people who can help them face life’s scariest moments.
