All 17-year-old Josh Schultz could think about was the pain in his head. That, and hockey.
The right side of his face throbbed most of the time. It kept him up late at night. It woke him early in the morning.
The pain radiated outward – relentless, rhythmic. When it was bad, all he could hear was the blood pumping in his head. It pulsated from his right temple through the side of his face, moving with his heartbeat, sharp and piercing.
In hockey, a sport he’d played since age 3 with exceptional skill, he found himself afraid to go into corners, afraid of being checked hard into the boards. It hurt too much to get hit. Once, his coach stopped practice for a few minutes when Josh came out of a drill in immense pain and began screaming.
But Josh kept going. His club team was on its way to USA Hockey’s national tournament; his high school team, the Indian Hills Braves, on their way to the state finals. Josh was their star defenseman. He was tough.
How tough, even his coach didn’t realize. “I knew it was bad,” coach Anthony Tabbacchino would later say of Josh’s condition, “but I didn’t know how bad it was until everything was over.”
“Everything” for Josh would mean the discovery that the source of his pain was a tumor in his skull. It would mean neurosurgery, reconstruction, and recuperation – all made possible by a dream team of surgeons and technology that is revolutionizing brain surgery.
For a high school athlete, there is only one senior year. His parents and the doctors would try to save Josh’s.
Josh’s crisis began simply enough. He woke up one summer morning before his sophomore year complaining that his jaw felt off-kilter. His mother, Sandy Schultz, told him he’d probably just slept in the wrong position.
That odd feeling gradually morphed into straight-out pain. Within a year, they had visited orthodontists, pediatricians, and ear, nose and throat specialists. The orthodontist tightened the space between Josh’s teeth. The ENTs prescribed multiple rounds of medication for swimmer’s ear.
But things kept getting worse. Josh lost the hearing in his right ear. He had trouble smiling and chewing. The pain was nearly crippling. There was a bump at his right temple.
Sandy was the principal of a preschool, organized and capable; her husband, Rob, a human-resources executive. Josh was the youngest of their two boys – quiet and reserved, shining most on the ice. He was a master of the puck, bringing it down, setting up his team’s power play.
When Josh couldn’t sleep, Sandy stayed up with him. In the middle of the night, she would sit at her computer, searching the web for answers while Josh lay on the sofa nearby, enduring.
Mornings before school, she gave him two Ibuprofen with breakfast. The pills got him through six of nine periods. After they wore off, he stopped caring about anything. “I just sat there in pain,” he said.
Finally, an ear specialist detected that Josh’s hearing was blocked not by an inflamed ear canal, but by something solid – a mass. He ordered a CT scan. That, at last, provided a diagnosis.
The doctor thought it was fibrous dysplasia, an uncommon bone disorder in which scar tissue replaces normal bone, causing it to become weak and – depending on the location – leading to nerve pain and deformity.
But even with a diagnosis, Sandy didn’t know what to do, how to help her son. The problem was the location of the mass: near Josh’s brain in the base of his skull, close to the nerves that control facial sensation and expression and the ability to chew and swallow. The specialists, mindful that the problem could grow back, hesitated to operate. One suggested that he manage it long term with painkillers.
In the middle of one particularly bad night, Sandy thought, “Nobody can live on Ibuprofen the rest of their lives. This can’t be his norm. He’s 17.”
So she kept searching online. That night, one neurosurgeon’s name popped up several times – Joshua Bederson. He was chief of neurosurgery at Mount Sinai Health System in New York.
The next day, she made an appointment.