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Family of boy, 6, balances medical ups and downs

Feb. 7, 2013 | 0 comments

Spend an afternoon with 6-year-old Wyatt Fuss, and you'll see a tow-headed farm boy who knows how to handle a horse. And an ATV.

And watch out, he's on a dirt bike now.

Sit beside him as he plays with a pile of sand and a cast of toy figures. You'll see a creative kid dreaming up stories where the littlest cow/knight/truck unearths a treasure or saves the town.

You have to look close to see signs that Wyatt is battling a serious medical condition - one he has had for most of his life.

There's the scar running down the back of his neck, visible just above the neckline of camouflage T-shirt. And there's his tendency to drop things or to knock over his water glass because he lacks feeling in parts of his hands and arms.

A benign tumor in Wyatt's spine has created a host of physical, medical and emotional challenges in his short life - many of them lying just beneath the surface. And his prognosis hangs over his family like a question mark: Other kids with a similar condition have not lived past their teens.

Coping with that uncertainty as well as the medical issues, day after day, year after year, is stressful and sometimes lonely, said Wyatt's mother, Jennifer Fuss.

She and her husband, Gerald, have found support in an Early Care program offered by the Hospice of Michigan James B. Fahner, M.D., Pediatric Hospice Care Program.

Early Care helps children who are not terminally ill but face a serious, chronic condition. For the Fuss family, that help largely consists of the services of social worker Sheila Schindler, who provides play therapy, memory-making activities and guidance in negotiating the medical system.

And when Jennifer Fuss needs a shoulder to cry on, Schindler is there for that, as well.

"She really gets it," Fuss said. "She knows how to listen and not to - you know - give you the cure."

Wyatt is the youngest of the Fuss' three children. They also have Dalton, 14, and Sophie, 10. The family also includes three disabled adults. Jennifer Fuss cares for them in an adult foster care program in their home, on a beef cattle farm in Alto.

Sitting at her kitchen table, while Wyatt and Sophie played nearby, Fuss talked about the medical ups and downs and how the family has coped.

Wyatt was about a year old when the signs of his tumor surfaced. He would wake up at night crying inconsolably, and he vomited frequently.

Then, he started falling repeatedly and he lost the ability to put out his arms to brace his fall. His parents glued foam swim noodles around the living room and carpeted the floor.

After three months of doctor and emergency room visits, Wyatt underwent a 12-hour MRI scan. A tumor was found in the spine, starting at the second cervical vertebrae.

"That's right next to the brain stem," Jennifer Fuss said. "It if was the brain stem, he wouldn't be here.

"That's my saving grace. It can always be worse."

The toddler underwent a 12-hour operation at Helen DeVos Children's Hospital to remove the tumor. It was a risky surgery: Because of the tumor's location, there was a chance he could die during the operation or be paralyzed from the neck down.

Tests showed it was a ganglioma tumor, which arises from the cells of the central nervous system. It was slow-growing and benign, which meant it would not spread to other organs.

After surgery, Wyatt spent a week at Mary Free Bed Rehabilitation Hospital learning to move his arms and regaining his balance. The family hoped, along with the doctors, that the entire tumor had been removed. Every three months, Wyatt underwent an MRI scan.

By the summer of 2011, before Wyatt started kindergarten, the tumor had returned. Wyatt had pain in his neck, back and legs. He had trouble walking and needed to use a wheelchair. He started losing control of his bladder and bowels.

That September, he underwent a second surgery to remove it.

The night before the operation, he created a picture for the surgeon. He covered most of the paper with black crayon, and under it, he drew a body lying down.

"He said, 'That's me during the surgery,'" his mom said. She asked why it was all black, and he said, "Because I'm so scared."

"It freaked me out so bad," Fuss said. "I cried for an hour."

After the operation, Fuss said the family was elated to hear that it appeared the entire tumor was removed. But in December, the oncologist told her some remained.

"She said the part that's growing is right behind the very main vessel in his cord, and it will never be able to be removed. And I need to plan on my child dying and not living to be very old," Fuss said.

"He could live into his teens. Well into his teens were her words. I was not prepared for that at all. That just blew me away."

Another doctor said he didn't agree with that assessment - at least not at that point.

"We don't know what to think," Fuss said. "It's just up and down, up and down.

"The blessing is it's taught me to appreciate every second with him."

Medically, Wyatt deals with several issues caused by the tumor's pressure on his spinal cord. His diaphragm is tight, which makes breathing more difficult, so he is receiving therapy similar to acupressure.

With the lack of feeling in his arms and hands, he risks hurting himself without realizing it. He once chewed off his thumbnail. At points, the pain caused by nerve regeneration has been so intense, he has screamed, thinking he was stung by a bee.

This year, the emotional impact is the most difficult to manage. At 6, Wyatt is realizing not every kid his age has a tumor, has undergone about 30 MRIs and two major operations.

The family was invited to a football game that benefited the Cord Foundation, which raises money for spinal cord tumor research. The event was in honor of a teenager who died of a malignant spinal cord tumor.

"I think that's when it dawned on him that he could die from it," Fuss said. "That was hard.

"We had already processed it with our adult minds. We've had four years to process all of this. He is just learning how different he is."

Although he is a quick learner, Wyatt was unhappy in kindergarten and complained all through the school year. Fuss is home-schooling him for first grade, and he is much happier.

Fuss worries about the effect Wyatt's illness has on his siblings. Both Dalton and Sophie are kind and protective of their brother, but Fuss fears she neglects their needs and spoils Wyatt.

"I always feel like I'm not giving them enough attention," she said. "It's changed our whole family dynamic."

Schindler, the social worker, gently encourages Fuss not to be so hard on herself. She has introduced her to other families coping with chronically ill children, who understand what it's like to live "in a holding pattern."

And with the help of Hospice donors, Schindler has provided opportunities for the family to enjoy fun experiences together, including a visit to the circus at Van Andel Arena.

Before Wyatt's surgery in the summer of 2011, the Fusses planned a short trip to Illinois to see a rodeo. Schindler called the fairgrounds and explained the situation. The family got VIP treatment - with free passes, parking and hotel room, and a personal escort for the rodeo.

Best of all for Wyatt: "The clown called out my name," he said.

This year, the Fusses decided to skip one of Wyatt's regular MRIs so they could enjoy the summer without enduring the test and the fears it evoked.

They returned to DeVos Children's on Sept. 11 for the first scan in six months. The whole family came. Fuss said she realized it was hard for his siblings to concentrate on school while Wyatt had an MRI. It was better for all three kids to be there, with the older ones distracting Wyatt and playing video games.

As Wyatt played a race car game on an iPad, a nurse put in the needle for the IV line. Wyatt started to cry, and his dad put his arm around him.

"We're all right here with you, buddy," he said. "And when you wake up, we'll be here."

At a follow-up appointment, the doctor said the MRI showed the tumor had not grown, Jennifer said. Wyatt asked the doctor three times to repeat the good news.

Six weeks later, Wyatt was sitting at his kitchen table, creating stories with a big tray of moon sand brought by Schindler. It was a warm fall day, with sunshine pouring in the sliding glass door and a breeze rippling the sheer curtain.

He used two tubes to create a cannon and had fun using it to launch various characters. One was a "crazy" knight named Wyatt, but that character was unharmed by the cannon.

The good guys "can't die, no matter what," he said.

Although metaphors can't be interpreted too closely, Schindler said the stories showed a sense of security and happiness. In one story, five brothers worked together to build a road. The youngest stayed up late and discovered a buried treasure. He used it to buy more equipment and animals for the family farm.

"It was all good. It was all this sense of power, of being special," Schindler told Fuss. "It was nice for him to get that out.

"It feels like he's in a better place, honestly."

"All of us are," Fuss said. "We haven't had that kind of report in so long."

The fear for the future was still there, though a bit lighter. And Fuss said that she was able to live with that.

"I've just come to terms with 'This is what it is,'" she said. "I've found I'm able to appreciate life and every day with him."

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