KIRO Radio – My Northwest

A Seattle couple has experienced the horrific pain of losing their three-and-a-half year old son to cancer. But instead of asking “why him or why us,” they’re focusing their energy on finding a cure for the leading fatal disease among kids.

“It feels similar to adrenaline, but it’s terror. It’s like terror coursing through your veins,” Carin Towne says, as she describes how it felt when she and her husband, Jeff, found out their son had stage 4 neuroblastoma, an aggressive form of cancer.

Ben Towne was 2-years-old at the time. His only symptoms were a slight discoloration around his eyes and he felt tired.

“I remember holding him against my chest, thinking this can’t be possible; two-year-old boys don’t get cancer. Adults or smokers get cancer, not little boys who like to play in the backyard or play on the beach. That was the start of our 16-month journey of cancer,” she says.

During those 16-months, Ben went through chemotherapy, surgery, a stem cell transplant, antibody therapies, and radiation.

They always thought he would be that miracle story and that the cancer wouldn’t kill him.

“You can’t think that’s going to happen in the midst of the fight, until all hope leaves. And then that’s even worse than the (initial) diagnosis,” she says.

After more than a hundred nights spent in hospitals and countless procedures, doctors said there was not much else they could do. Carin and Jeff made a decision no parent should ever have to make.

“It was an intense day at UW Medical Center when they were trying to radiate his brain and he was just so upset. He was crying so hard. We looked at each other and said, ‘Enough, enough, let’s go home and take the days we have and let him be a little boy for as long as he can,'” she says.

Carin says Ben seemed to know that he was going home for good.

“When we left, he said ‘We’re all done at the hospital.’ It was the first time he’d ever said that and I think that was his way of telling us he was okay with that decision,” she says.

“It turned out that he survived another eight weeks and those weeks we treasured. We were home, we were in the place that Ben loved the most, and we were together as a family,” Jeff says.

In December of 2008, Ben Towne died at the age of three-and-a-half.

As they tried to make sense of losing their first-born son, the Townes realized they could use their devastating experience to help others.

They’ve created the Ben Towne Foundation with one main goal.

“It’s bold. We want to cure childhood cancer and change the way the disease is treated,” Carin says.

They’re frustrated that pediatric cancers only get three-percent of the federal government’s budget for cancer research.

“One in 300 kids will have a cancer diagnosis by the time they reach adulthood. It’s the leading cause of death by disease for children,” Jeff says. “None of this is ok.”

To quote their son Ben, they won’t quit until childhood cancer is “all done.”

“In the midst of our grief, we kept asking, ‘If we don’t do this, who will?’ We understand the ultimate loss of childhood cancer and if we don’t stand up to this horrible disease and say, ‘This is not okay,’ who will?,” she says.

The Ben Towne Foundation has already raised more than a half-million dollars. The group is partnering with Seattle Children’s Center for Childhood Cancer Research, which opens a new research lab this week.