Kid Courageous

A risky surgery is giving this 7-year-old boy a fighting chance.

The Tumor

Aidan Fraser is running around the apartment in Brooklyn like his pants are on fire. "Are you going to interview me now?" he asks impishly, his blue eyes sparkling. But he runs away without waiting for an answer, swishing two toy swords vigorously as he charges into the next room. This is typical behavior for an active seven-year-old boy. But it's remarkable for this youngster who, less than three months earlier, was in such a precarious physical condition that a simple fall could have been fatal. At that time, Aidan needed to be positioned against strategically placed pillows on the sofa or carefully transferred to a wheelchair just to sit up. Still, his mind raced a hundred miles an hour, and he described the ceiling-high robot he planned to build with his LEGOs, not to mention his more ambitious goal: "I want to be a superhero," he exclaimed. He spoke animatedly about his favorite characters, the colorfully costumed Power Rangers, while ignoring the cumbersome metal brace attached to his head. The superheroes seemed to be a symbol of strength to this child who had battled a rare disease his whole young life.

The brace, called a halo vest, was a necessary evil designed to manage the effects of neurofibromatosis type 1 (NF1). It's a genetic condition that can cause tumors to form along nerves. Aidan was diagnosed with the illness when he was five months old. But as he grew, the condition became so aggressive and severe that he developed a rare large tumor called a plexiform neurofibroma, visible from the back of his shoulder and collarbone.

Over the years, it has grown bigger than a grapefruit, expanding into his chest and around his spine, distorting several vertebrae in his neck in a reverse C shape and, as a result, placing severe pressure on his spinal cord. As the tumor got bigger, so did the risks of further damaging the spine. (Aidan's tumor is benign, but such tumors can become cancerous.) The spinal cord was being stretched to its limit over the bone. Any kind of jostling or bumping could potentially cause severe pain and even paralysis.

His mother's worst fears were realized when he took a tumble one night at his grandparents' house. "He fell down and lost the use of his arms for about a week and a half," Suzanne explains. "We're actually very lucky that when he fell, he didn't stop breathing."

The growing alarm over his delicate state led the Frasers to a group of real-life superheroes, specialized surgeons who saw the danger ahead and put Aidan in traction for a few days before attaching the halo vest. They formed a team armed with the medical know-how to perform an unprecedented procedure aimed at repairing Aidan's deteriorating spine.

Good and Evil

Aidan's troubles go beyond his disease, and they started at an early age. "He's very aware of good and evil ever since his dad passed away," says his grandfather Joe Sullivan. Rich Fraser died at age 32 in the September 11 attack on the World Trade Center. He was an executive for Aon Corporation, a commercial insurance brokerage firm, and worked in the South Tower on the 92nd floor. Aidan knows a plane flew into the building, and he asks why it wasn't strong enough to stay up.

Suzanne says her husband's death was devastating, "but time helps everything. I have to take care of Aidan, and that makes you keep going. There's just no other choice." Taking care of Aidan is now a family affair; Suzanne and Rich's siblings and parents actively participate in his life. And it's an "incredibly, strangely happy life," according to Suzanne, who describes Aidan as "a stand-up comic. He's absolutely the funniest person I've ever met." His sunny disposition comes from his dad, she says, describing Rich as "sweet and nice and outgoing." So she takes her lead from that because she knows there will be no more Daddy's Days, the Saturdays when father and son went to the playground, the zoo, the library. In trying to explain the loss to her only child, she told Aidan, "Daddy is an angel," and says, "He thinks it's really cool that Daddy can fly."

Aidan was almost two and was recovering from his first NF1-related surgery when his father died. A few months earlier, the tumor had compressed his spinal cord, temporarily paralyzing his legs. Emergency surgery returned movement to his limbs, but his spinal column was weakened after part of it had to be removed. And the prognosis wasn't good. Suzanne was visiting doctors all over the country for help. Her quest led to a fortuitous meeting with neuro-oncologist Adam Levy, MD, director of pediatric neuro-oncology at the Children's Hospital at Montefiore in New York City, who had been a friend and soccer teammate of Aidan's dad's. That history forged a special bond and a search for new treatment options. Dr. Levy tried a series of chemotherapy regimens and medical therapies, and found that the drug interferon appeared to have played a role in stopping the growth of Aidan's tumor for the previous 18 months. "It was the first time in Aidan's life that the tumor was stable," he says.

Aidan's spine, however, was twisted and fragile, and his paralyzing fall lent a new sense of urgency. Explains Dr. Levy, "His mother called and said, 'Even if one of my hairs touches his arm, he screams and cries out.' He was in tremendous pain from the spinal cord being slung across his vertebrae."

The search led Aidan to the four-member team of specialists at the Children's Hospital at Montefiore. "I've been in practice for more than 20 years, and I'd never seen a spine that bad," says Rick Abbott, MD, the pediatric neurosurgeon who led the group. They took on Aidan's plight, completing the complex surgery over two days, in two separate weeks.

The Next Step

Aidan prepared by packing up his LEGOs and his Power Rangers videos and putting on a brave face. But, Suzanne admits, "he gets mad and thinks it's unfair, which it is. And he gets terrified." To take his mind off things, she gave him a Power Ranger Megazord, a robot that helps the Power Rangers fight evil. The boy's eyes lit up, but Suzanne's were clouded with concern: "Surgeries stink because you never really know," she says.

A big hurdle, however, was dealing with the tumor itself. Only about one-third of it is visible along the youngster's left shoulder and collarbone. The rest, according to Dr. Abbott, surrounds the spine in his neck and grows into his chest. The doctors didn't want to remove the mass, because it holds the nerves extending to Aidan's left arm, and it is very close to nerves affecting his voice box and major blood vessels. To navigate all that, the team used a computer guidance system. Complete with crosshairs, the device showed them where they were in Aidan's body at critical points in the procedure. "It's a system used for brain tumors, and this was an unusual application. I'd never seen it done for this sort of problem," explains Dr. Abbott.

So on a crisp November morning, the surgeons went to work on their first marathon session. After entering through the front of Aidan's neck, Richard V. Smith, MD, carefully maneuvered around and through the massive tumor using the guidance system. He and Dr. Abbott moved Aidan's vital blood vessels to make a clear path to the spine. Then it was John K. Houten, MD, up next. Using a tiny drill under a microscope, he removed the severely damaged C-shaped part of the spine. David A. Staffenberg, MD, worked through a tiny incision in Aidan's chest to remove small pieces of rib used to bridge the gap left where the bent part was removed and to provide frontal support for the spine.

A week later, there was a second round of surgery. Doctors opened the back of Aidan's neck to fuse more rib segments linking his skull and spinal column. This would provide what Dr. Houten described as a "sort of belt and suspenders" support system for the spine to heal and grow.

Before leaving the hospital, Aidan held his own news conference from a gurney, telling reporters with a maturity beyond his years, "I wouldn't be out here if the doctors hadn't scheduled the surgery. They saved my life. I'm going to go to rehab, get my work done and see my dog, Lulubelle."

Less than two weeks after his second surgery, Aidan could walk tentatively down a hallway holding his mother's hand. The pressure off his spinal column had other immediate benefits: His speech and ability to swallow improved.

Aidan completed most of his rehabilitation therapy at home with regular visits to the doctors monitoring his recovery. In February, doctors removed the halo vest. In March, he went back to school, playing like any other kid, and finished first grade. But there's a long, careful road ahead. "Aidan's definitely not out of the woods in the big picture of his NF1," Dr. Levy says. "Every case is different, and we can't predict what Aidan's tumor will do. But it was a life-and-death situation with his spinal cord, and I'm really comfortable with how that is now."

The next step is deciding what may be needed in the future to keep the tumor from growing. "My real hope is that he won't need any more chemo or treatment for now, and we'll just be able to concentrate on him being a kid," says Dr. Levy.

The Frasers have moved to an apartment in a section of Brooklyn that, Suzanne says, is "closer to Aidan's school and closer to friends." It's a bit cozier; there's no picture-window view of the Brooklyn Bridge -- or the lower Manhattan skyline where the Twin Towers stood. And inside the boxes to be unpacked are many gifts sent to him by those who care, including, from his father's former colleagues, a teddy bear outfitted in a Superman cape with Aidan's name emblazoned on the back.