Jennifer Cappel holds her sobbing 3-year-old son, Dakota, trying to console him as they wait in a small examination room on the campus of St. Mary’s Medical Center in West Palm Beach.
“This is the worst part for me,” the mom says.
It’s not her son’s crying she’s talking about. It’s the waiting. These minutes she has to wait while the blood sample just taken from his little finger gets analyzed.
“The thing is, he doesn’t know what’s coming next, either,” the mom says. “He doesn’t know if we’re going home or going to the hospital.”
This has become a recurring drama in the lives of the Cappels of West Palm Beach.
There is Dad, Kyle Cappel, sitting in that examination room, already late for work. And there is big sister, Zoe, who at age 5, has had two years of feeling what it’s like to be the other child, the healthy one, in a young family that revolves around the leukemia her younger brother has.
On the outside, Dakota Cappel appears to be a rambunctious, carefree preschooler, so full of life and wonder. He proudly shows strangers his knowledge of animal names from his little picture book.
He is, for reasons unknown, fascinated by the number 8, and he’s already over Disney’s Donald Duck in favor of Darrington, a monster truck in the Nickelodeon “Blaze and the Monster Machines” show.
Can you sing along to “Sheriff Callie’s Wild West” song? He can.
But when he was just 16 months old, something sudden and terrible happened to little Dakota’s blood.
“It looked like Kool Aid,” his mother said. “You could see right through it.”
It was so low on hemoglobin that four blood tests came back with the erroneous result that the machine was broken. The fifth test detected the real problem: acute lymphocytic leukemia, the most common form of childhood leukemia.
Unlike adult-onset leukemias that go through a relatively long chronic phase before becoming acute, childhood leukemias become acute right away and require immediate treatment for survival.
Dakota’s lucky enough to have a mom who has a bachelor’s degree in nursing and was studying to be a nurse practitioner.
“If my wife wasn’t as educated as she is, we would have had more complications,” Kyle Cappel said.
So about half of little Dakota’s young life has been dedicated to saving it through multiple rounds of chemotherapy he gets from a port in his chest and through injections in his spinal cord.
He has lost his hair six times already, his mom says, which is why she is letting it grow long now. It’s just so nice to see so much of it.
The chemo has ruined his childhood teeth, and weakened his legs so much that he had to learn to walk again.
But he runs now, and as for his black teeth — well, that’s just another health care issue that will have to be addressed. But not now.
The key now is to keep Dakota from getting sick, especially with the flu season starting.
So, the Cappels try to live in a hermetically sealed world. At least as much as possible. They walk around with hand sanitizer, spread mats in their home and frequently disinfect them.
“We’ve created a control bubble in the house,” the father said. “We try to fill our house with love and let the kids be kids.”
And at bedtime, the dad asks his kids the same question: “How many hugs to you need?”
No mall. No crowded indoor spaces. The Palm Beach Zoo is OK, though.
“It’s outside, so it’s a good place for us,” the mom said.
Older sister Zoe would be going to school this year, but there are too many germs in schools. So Jennifer is home schooling her daughter. And if Zoe gets a sniffle, she’s sent to stay at her grandparent’s home.
“It’s hard on her,” the mom said. “We all hug Dakota when he’s feeling bad, but when she gets sick we don’t hold her.”
Little Dakota is still looking at another year of treatment, but Jennifer Cappel feels like one of the lucky moms now — a mom whose child has a kind of cancer that can be cured.
“We just figure we will get through this, and we’ll worry about the rest later,” she said.
“The rest” is the financial ruin that a costly childhood illness like this causes. The Cappels make too much money to qualify for Medicaid, so they’re on a health insurance marketplace plan with high deductibles and co-pays.
“When a middle-class family gets hit with pediatric cancer, it’s like a nuclear bomb going off in their lives,” said Barbara Abernathy, CEOthe chief executive officer of Pediatric Oncology Support Team, a West Palm Beach-based nonprofit that helps families like the Cappels.
Having private insurance doesn’t solve things either, Abernathy said.
“If they were on Medicaid they’d be paying less,” she said.
There’s a shot Dakota needs, one that is an essential part of his treatment, but it’s not covered by his insurance. And the only way to get it is to pay the money upfront to the drug company. No money, no drug.
“It’s $2,300,” the mom said. “But it’s not like I’m not going to give it to him. So we have to put it on the credit card, which already has $17,000 on it.”
She’s got about $60,000 in school loans, she said.
Because she has to stay home to take care of her children, the family has to rely on Kyle as the sole breadwinner.
He is the marketing director for Simple Path Recovery, an addiction treatment center in Pompano Beach.
“He’s the type of guy who comes in early and leaves late,” said the center’s founder, Justin Dunbar. “And he’d give you the shirt off his back.”
To make extra money Kyle has begun selling his tools online.
But it isn’t enough. They keep getting deeper and deeper in debt as their son fights his way through his illness.
“There’s no way they can get out of this on their own,” Abernathy said. “They don’t need a handout, they need a hand up.”
Dakota Cappel, 3, was diagnosed with leukemia at 16 months old. One of the shots he requires costs $2,300 a month, which is not covered by insurance. Dakota and his family need financial help to pay for medical bills and household expenses. Chemotherapy has ruined Dakota’s baby teeth, and he will need future dental care as well.
Nominating agency: Pediatric Oncology Support Team Inc.
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