Most Valuable Player

Sixteen-year-old Trevor Cusack was poised for varsity stardom when he was suddenly sidelined by a mysterious illness that is shutting down a crucial part of his brain, devastating his short-term memory and ability to walk, talk and eat. After scores of tests and a year under the scrutiny of the country’s top specialists, no one knows exactly what is wrong with Trevor. Only that it’s the fight of a lifetime for an extraordinary kid who still finds reasons to smile.

"Will Trevor Cusack ski today?"

In this sixteen-year-old’s life tormented by questions, a seemingly simple one shoves its way to the forefront at this moment. Because here on the ice-glazed asphalt of a ski area parking lot, Trevor tries to get out of his mother’s Volvo. Debra Cusack tells him with a cheerful, commanding tone to move his legs out of the car and set them on the ground. Trevor, in fact, knows that this is how to get out of a car, having done it thousands of times in his young life. But now his brain needs reminding. And so very slowly, as if his desire must push through mental quicksand, his snowboots lift.

Move your legs. It’s something we do every day with thoughtless grace. But here, for Trevor Cusack, spontaneous movement is a gift withdrawn. As are balance, speech and accurate vision. Short-term memory. And now, recently, swallowing. Within eighteen months of striding onto the playing fields at Portsmouth Abbey, a freshman with enough talent and ambition to earn a starting spot on the varsity soccer team, this teenager who for years carved the looming slopes of Loon Mountain on his snowboard now labors to stand upright with the support of his mom. At sixteen, he exhibits a confounding rat’s nest of symptoms that echo strains of Alzheimer’s and Parkinson’s diseases but is neither. After nearly a year of searching, no one has figured out exactly what is wrong with Trevor Cusack. Only that something is indeed very wrong, and worsening.

“Let’s go, Trev,” says Deb, her compact frame tight against his thin, unsteady one. With her arm around his waist, they head toward the door of Loon’s Adaptive Snowsports School, her ski boots clunking purposefully while his boots flail gently at her side.

What happened to Trevor Cusack in these eighteen months? Why? And still—how will Trevor ski today?

Parenthood provides few moments of relief. We pray for pregnancy without miscarriage, infancy without SIDS, toddlerhood without deadly runs into the street, youth without devastating falls from trees. At mid-adolescence, we breathe a sigh of relief in the lull before drinking, driving, risky sex and true independence. We revel in children like Trevor, who have grown up strong and graceful, humorous and kind. Debra and Robert Cusack did. In September 2006, their youngest son was turning precocious aptitude into potent athleticism. Like his older brother, Alex, he began his freshman year as a day student at Portsmouth Abbey School. After a summer spent working at a soccer camp at Moses Brown, Trevor was fitter than he’d ever been, happier than he’d ever been, and ready to play on the varsity squad. By the second game, he’d earned an assist and scored a goal.

But alongside his athletic achievement, school wasn’t going so well. “By the end of September, we started to hear from his teachers,” Deb says. Trevor was having trouble in all his classes. At mid-fall conferences, conversations revolved around the usual suspects: transitioning to a traditional high school academic environment, the pressures of varsity sports, perhaps even a learning disability that had gone unnoticed at the Gordon School in East Providence, where he’d always been an A/B student. So he worked harder, getting up at five in the morning, studying, struggling to hang onto the dense material he was being asked to absorb: Homer, the Bible, physics. The Abbey moved him out of honors-level math, which he was barely passing. Spanish, barely passing. Flunking almost everything else. Trevor would come home each day, exhausted from practice, to homework sessions with his dad. “Bob would read with him,” Deb remembers, “then ask him an easy question. And he wouldn’t have a clue. One night, Bob came to me practically in tears, saying, ‘There’s something wrong.’ ”

By December, the Cusacks began to look for answers, or at least, some description of the landscape they found their son suddenly lost in. Peter Oppenheimer, Ph.D., a Barrington-based clinical psychologist who had known Trevor from the Gordon School, which his own children attended, agreed to evaluate him on short notice. Even at first glance, Oppenheimer was surprised. “He didn’t seem to be as sharp as I’d remembered him to be,” he says. “He was not the kid I knew.” Oppenheimer found the boy’s old knowledge still intact, but anything involving new learning or active problem solving slowed him to near-stopping. “His emotional functioning was fine,” Oppenheimer recalls. “But there was something wrong with his [neurological] functioning. Something was changing. And it had changed fast.”

Oppenheimer worked over the testing results, and a few weeks later paid a visit to the Cusacks’ stately Rumford home, a beautiful old Colonial that has been pristinely, warmly restored to near postcard perfection. In front of a roaring fire, surrounded by Christmas decorations, Oppenheimer sat down with Trevor’s parents. “Something looks significantly wrong and we need to check it out,” he said. “There are signs that his brain isn’t working the way it used to. We need to get him to a neurologist. Quickly.”

Brain tumors. Cancer. The Cusacks had known local children who’d run these gauntlets, some who had survived and some who hadn’t. As grim prospects leapt up like sparks from the crackling fire, as Trevor lounged in front of the television around the corner, his parents girded for medical battle. Within weeks, Trevor Cusack would have enough blood drawn for twenty-five assays. His urine would be analyzed, his hearing and vision checked. He’d lie still for an MRI, an EEG, a spinal tap. While labs pondered the minutiae of his chemistry and anatomy, the Cusacks took a much-needed vacation to Bermuda. They walked the beach and tried to forget, then scrutinized their son to see if changes in environment might be helping. They weren’t. They played golf and noticed Trevor lingering long over the ball before he swung, as if summoning himself to accomplish what had come as easily three months ago as kicking a ball into an opponent’s net. They went swimming, watched their son in the gentle surf, and trusted that science would show them what was happening to Trevor. As surely as the tides pushed waves to the beach, medical science would bring them an answer.

sports awardsJohn Gaitanis, M.D., rises from his office chair to reach for a brain. Tall and youthful, he looks as much like a starting center on a college basketball team as a pediatric neurologist with twelve years’ experience in his specialty. And when he settles back in his chair with a white, resin model of the human brain in his opened palm, it looks for a moment like some kind of bizarre ball he might toss. Instead, he rotates the model to reveal a cross-section from the side—and begins a tactile tour of humanity’s most complex possession.

His fingertips head to the brain’s deepest areas. This is where—after fifteen months of working with the Cusacks, after more than 100 tests and meetings with specialists at major medical centers in New York and Boston—he believes Trevor’s issues lie. But just because his fingers now tap at the thalamus, a small, olive-shaped structure seated near the brainstem, doesn’t mean the Cusacks have their answer. Far from it.

Gaitanis explains that all these months of testing since he took Trevor’s case in January 2007 have revealed both much and little. Early scans of Trevor’s brain showed no apparent lesions or tumors, which ruled out the threat of cancer but left the mystery unsolved. Meanwhile, upon returning home and to school, Trevor began a physical decline that in suddenness and swiftness matched his early cognitive downturn. His coordination wavered, diminished. He developed double vision, sweaty hands and occasional night sweats.

Gaitanis, who works at Hasbro Children’s Hospital, referred the Cusacks to David Urion, M.D., a pediatric neurologist at Boston Children’s Hospital. Urion ordered a PET scan, a type of nuclear imaging that shows chemical activity, to get a view of what was happening inside Trevor’s brain. What Dr. Urion saw was a substantial shutdown—significantly decreased metabolic activity—in two parts of the brain: the medial temporal lobes (which sit low on both sides of the brain) and the basal ganglia, a complex bundle of nuclei that connect the cerebral cortex (the wrinkled, outermost layer of the brain) to the thalamus and brain stem. These were areas of the brain associated with memory, learning and cognition, sensory processing and initiation of movements. The results correlated to certain symptoms Trevor was experiencing but didn’t explain what was wrong or why the metabolic activity was decreased.

Urion ordered another round of tests to look for more answers, and based on the increasing decline in Trevor’s functioning, he advised the Cusacks to take their son out of school. While his Abbey classmates carried on with winter sports, Trevor spent three mid-February days supine at Boston Children’s, undergoing another MRI, an EEG with strobes, a skin biopsy, another spinal tap with blood drawn simultaneously, a chest x-ray, more vision and hearing tests, and daily blood and urine draws.

He came home from Boston on Valentine’s Day. Every test result came back normal—more relief, yet no answers. The list of what wasn’t wrong with Trevor began to lengthen, but the list of what might be wrong, from Lyme disease to mitochondrial disorders, continued to provoke testing, research, consultation and worry. The networking grew more extensive as the Cusacks worked with Gaitanis to have Trevor’s case presented to nationally known specialists in major neurological centers. He was seen in New York City by a national expert at Columbia University Medical Center, and presented to well-known neurologist Dr. Isabelle Rapin when she led grand rounds in Providence with Brown medical students. To rule out Lyme disease, the family consulted with infectious disease specialists in Providence and Boston, and also a renowned Lyme specialist in New York.

All the while, as Trevor underwent month after month of the tests prompted by each referral, he tried various therapies indicated by his symptoms, including a twenty-one-pill, twice-a-day regimen for mitochondrial disorders and a twenty-nine-day intravenous therapy for a particularly stealthy strain of Lyme. Trevor underwent another two-day intravenous therapy in case he might have a paraneoplastic syndrome, a disease caused by an undetectable cancer. He did a three-day course of intravenous steroids to rule out for good anything immunological that might be causing his myriad debilitating symptoms. While the Cusacks still didn’t have a test result to tell them what was wrong, perhaps a therapy that improved any or all of Trevor’s symptoms would guide them toward the cause.

But nothing worked, nothing added up. No specialist, no expert, had ever seen a patient like Trevor. There was no syndrome, however rare, to label his confounding tangle of symptoms. One by one, diseases continued to be ruled out. He spent his days at home or accompanying Deb to the Gordon School, where she works as director of instructional technology, to volunteer in the classrooms with younger students until his worsening balance made it too risky for him. When they were home from their full-time jobs, Deb and Bob spent hours tracking down results and reading medical literature. They set up a website to keep their large circle of friends up to date. They followed up on leads, tended to the increasing physical needs of their son. Summer passed. It had been a year since he’d played soccer to acclaim, and a year without a diagnosis.

The Cusacks are easy people to like. Deb, with her blond chin-length hair usually swept back in a headband, has a sweet, girlish quality. She’s both kind and candid, her New Hampshire roots lending her a no-nonsense affability. Bob, tall and gregarious, with a deep and accurate memory of details, seems naturally fit for his current post as an East Providence city councilman, in addition to his work as an investment counselor at a small firm in Providence. Like his wife, Bob Cusack is kind, direct. But the steel of their spines is evident. They have lobbied for their son, though not as antagonists. It’s clear they trust and like Gaitanis, whom Bob calls the “quarterback” of Trevor’s case.

This is a family with a broad and caring circle of friends. As Trevor’s condition has worsened, people who know the Cusacks have done everything from advocating medically to organizing a schedule of home-cooked meals for delivery to their home. Deb and Bob speak at length about the many ways people have stepped into their lives as Trevor has drawn them in. They marvel at this; it makes Deb cry.

Perhaps their favorite story among many is the welcome Trevor received in September, when he enrolled in special education classes at nearby East Providence High School. By fall, Trevor had become so physically unbalanced that he needed to be in a wheelchair. His overall motor abilities had slowed to the point where he could no longer speak and his hand movements were limited. His short-term memory was frozen — within minutes, he could not remember what he’d been told. But inside his recalcitrant body and rebellious brain was a Trevor who could do algebra, play chess, remember Spanish words he’d learned in middle school, and who missed the company of his fellow teenagers. Endless strings of “Seinfield” episodes still made him laugh, but he longed to be out of the house. And Deb needed to go back to work. The family turned to East Providence High School, well-known for its extensive special education offerings, to solve the immediate concern of what to do about Trevor’s days.

The Cusacks cannot say enough about East Providence High School, the specialists who work with Trevor, and most of all, the students who have rallied around their son. Football players come into special ed regularly to work with the kids, and many of these strapping, hard-hitting boys have been some of Trevor’s most solicitous friends. When the Cusacks posted photos on their family’s website of Trevor with friends from Portsmouth Abbey, they heard an outcry: “We want pictures of Trev with us.” One East Providence senior recently wrote his college admissions essays about Trevor. Trevor proudly wears a hooded sweatshirt that reads “Townie,” and this March, when his family began discussing a spring trip to Florida, he grew agitated. He did not want to miss school. So the Cusacks, so grateful for this life that has grown around their son, like a pearl coating a grain of sand, cancelled their trip.

“It’s hard to build a house,” Dr. Gaitanis says, “but it’s easy to knock one down.” It’s an apt metaphor for the brain, where intense complexity and interconnection make for the nuanced, remarkable functioning of the human mind and body, yet simultaneously leave them vulnerable to ruin should any part of the system become damaged. But unlike a house, which does not veil its inner workings, the brain still hides much, if not most, of its essence from even the most advanced inquiry. “The brain remains a mystery in many aspects of neurological function,” Gaitanis says. “We’ve come to understand a lot in the last decade, and yet there’s more we don’t know than we know. As a physician, I’m always humbled by our lack of knowledge.”

It is indeed a humbling experience for everyone who knows Trevor. We live in a consumer society, where asking for something brings a result. We live in a Western culture, where science offers answers. And we live in the twenty-first century, where technology promises tantalizing power to overcome any obstacle. We do not live in an age that embraces mystery or readily accepts it. And yet this remains the core of Trevor Cusack’s story: a mystery.

Since last September, another six months of assertive testing have yielded many more results, all normal, no diagnoses, only one clue: A PET scan in January showed a near shut-down of activity in Trevor’s thalamus, the point of sensory processing between the brain and body—a switching station of sorts. It was a where, says Gaitanis, but not a what. Meanwhile, Trevor’s motor functioning continued to slow into the winter. He began having increased trouble swallowing, and he lost weight and energy. Watching a grim momentum take over their son’s body, his parents felt the hot breath of passing time; each wait for yet another test result stretched into eternity.

Trevor had a feeding tube implanted surgically in the spring, a way to get nutrients into his system without the agony of having food slide from his mouth as he struggled to eat. He gained back some weight, and his demeanor brightened. The testing goes on, and although Dr. Gaitanis worries about exposing Trevor to such hardship, poking and prodding of every sort, the Cusacks have allied with him in continuing to pursue leads. Trevor’s rebound offered more time to push for answers, to look for connections, to hope that somewhere, someone might know of a case like their son’s and offer information, context. Or at the least, comfort.

Meanwhile, spring ski season arrived, and for the Cusacks, this always meant time with Deb’s parents up in New Hampshire, playing on the slopes of Loon. Deb knew about Loon’s adaptive ski school, known for its success in getting people with any disability onto the mountain. Did Trevor want to try adaptive skiing this year? Trevor had lived his whole life at high velocity—bolting from his mother’s grasp as a toddler, winning schoolyard races, snowboarding with adolescent abandon. Did he want to ski? The question moved slowly through his brain. And although his once-lively body was now stilled by neurological roadblocks, Trevor managed one of the few forms of communication left to him: a slow, but certain, thumbs-up.

Which is why, back here at the base of the mountain, Trevor Cusack is going to try to ski. Not on his legs, which retain strength but cannot be harnessed by his brain to do their jobs. Instead, in a rugged chair bolted to a pair of skis. Even though Trevor can’t walk, can’t balance, can’t talk or eat or remember the names of the hearty guys lifting him into the chair and tightening straps around his folded legs, he knows he wants to get out there. And he remembers how to fly down a mountain.

Will Trevor Cusack ski? He will, in fact, today in the bright late winter sun. Set loose at the top of the lift by his guide, who holds long straps of webbing to steer Trevor from behind if he needs it, the boy flies down the mountain, needing only to shift his weight slightly to carve turns with his ingenious rig. It’s amazing. Trevor is skiing. From behind, from a distance, he looks like any teenager escaping the grasp of his elders. He looks like a kid set free.