Jake Klopfenstein, a 13-year-old boy in Florida, knows one that thing all kids with cancer have in common: the sheer boredom of sitting around waiting for something to happen — for yet another test, scan or a round of chemo.
After watching a dear childhood friend named Ryan die from cancer, the boy who loves to fish had an epiphany. What if he could teach children with cancer to fish?
“He would say to me, ‘Mom, Ryan didn’t even get to go fishing. He was going through such a horrible battle with cancer and he didn’t even get to go fishing and enjoy the last couple of years of his life,”’ Jake’s mom, Toni, recounted recently as she watched her son and other kids cast their lines on a sunny Saturday.
“So we got our brains together and came up with Angling for Relief,” the mom explained.
The 1-year-old organization sponsors outings for kids with cancer, survivors and their families. Local businesses donate rods, reels, T-shirts and lunches for a daylong fishing event at Florida water spots.
“When they come here, they’re with people who understand what they’re going through,” Toni said. “So they’re not going to get questions like, ‘Why don’t you have hair? Why is your leg in a brace?’
“They can just be kids, and they know that nobody’s going to be staring at them, asking questions, because everyone here understands what they’re going through,” she said.
And that, say the parents of children fighting cancer, means everything. Skyla D’Autorio brought her 3-year-old daughter, Trinity, to Saturday’s outing. It was the family’s first time participating in an Angling for Relief fishing day.
Previous gatherings had taken place on Trinity’s “chemo weekends.” That’s what the family calls the toddler’s regimen of three-day chemotherapy sessions.
“A lot of times, the cancer kiddos get disinvited to things because people are scared of them,” Skyla said. “They’re scared because they don’t know what to expect when you say, ‘Oh, my 3-year-old has cancer.’
“She’s just a normal 3-year-old,” Trinity’s mom explains. “She just happens to be fighting a deadly disease, and today she just gets to have fun and catch fish. We were here all of five minutes, and she already caught her first fish.”
Trinity was diagnosed with neuroblastoma, an aggressive cancer that starts in the nervous system. She has a tumor on her neck that is inoperable for now. It originally stretched from the base of her head to the top of her spine. While chemo has shrunk the malignant growth, it’s still there, spreading its evil cells.
“These kids fight for years. Years … for her to be classified all clear, she needs five years of clear scans, and we have not had a single clear scan yet. We’ve got a long road ahead, just like a other families,” Skyla said. “So these events are everything.”
Not only does Trinity to get to run around with her big sister Sierra, who’s 5, and her little sister Anastasia, who’s 1, Trinity gets some coveted one-on-one time with Jake, who is something of a rock star to these kids.
“Jake is awesome,” said Skyla. He has a big heart and a high tolerance for witnessing suffering.
“Not everyone has the compassion and the love that he can show these kids,” she said. “It’s hard sometimes. It’s hard to watch a little kid fight so hard , and not be able to fix it.”
To Jake, it’s not a big deal. It’s just a way of helping.
“I feel really good when I do it,” he said, “and it makes me feel a lot better about myself.” It also helps to remind him of Ryan, an 8th grader who was Jake’s school mentor when he was in kindergarten.
Angling for Relief is for children “going through the same thing as him, and I feel like I’m looking through them into Ryan,” he said.
Besides fishing trips, his group also offers “dry fishing” — tackle boxes distributed to pediatric cancer wards so children sitting around waiting for something to happen can cast rods and learn to tie knots.
Jake’s initial plan was overly ambitious, his mother said. He wanted to dig ponds outside cancer centers for children and stock them with live fish.
“I’m like, ‘That’s a great idea,'” his mom recounted. “‘Let’s start a little smaller.’ The organization’s current structure is “so much more manageable than … ‘Let’s put together a pond outside of each cancer hospital,'” Jake’s mom said.
But that’s not to say it is a bad idea. Real fishing ponds “would be wonderful,” she added. “Maybe one day. Maybe one day we’ll get to do that.”