October 5, 2009 - By Erin Digitale
Thirteen-year-old Zac York arrived in Michael Edwards’ office leaking spinal fluid.
“The story was almost surreal,” said Edwards, MD, a neurosurgeon and expert in pediatric brain tumors at Lucile Packard Children’s Hospital. Zac’s parents had called Edwards in a last-ditch effort to help their son battle brain-stem cancer. “This kid was in the hospital in San Diego for months, and every time the doctors did something, there was a complication,” Edwards recalled. Fluid pressing on Zac’s brain stem had crippled his sense of balance, confining him to a wheelchair.
The day Edwards met Zac, a shunt that was supposed to drain excess spinal fluid from his brain malfunctioned, leaking the fluid from an incision in his back onto his clothes. Zac had to be admitted immediately to Sacramento’s Sutter Medical Center, where Edwards then worked. Once Zac stabilized, Edwards discussed treatment with the boy and his parents, Brenda York and Chris Wimpey. Surgery to remove the tumor was Zac’s best hope, Edwards told them, but he warned that it was extremely risky.
Edwards explained to them that he might not be able to remove the whole tumor. Brain-stem surgery could leave Zac severely disabled, and there was a one-in-20 chance Zac would end up with “locked-in syndrome,” fully conscious but unable to move or speak.
The operation is one that only a handful of surgeons would attempt. While Edwards falls into that elite class, he is well aware of the difficulties of doing it right. The responsibility that goes with such procedures weighs heavily on him.
Zac’s parents, Brenda and Chris, were wary. They’d seen Zac endure several smaller brain surgeries—for biopsies, shunt instillation and so on—that left him worse off. They asked Edwards to try radiation instead, and he did. But Zac’s tumor kept growing.
Then Zac did something few teenagers suffering severe illnesses are able to do. He convinced his parents that he wanted to go ahead with the surgery and that it was the right choice. “He was willing to accept the risks himself,” Edwards said, adding that’s rare for a teen. “It’s a very difficult time for a child to have a major surgical procedure, particularly when there is a risk of disability or not surviving.”
Zac York climbs up Mount Whitney a few years after his operation. He could not walk before the surgery to remove a tumor from his brain stem.
The surgery went well. Edwards removed the whole tumor, and the operation relieved pressure on Zac’s brain stem. But the boy still couldn’t walk a step, and Edwards was unsure how much mobility Zac would recover.
Zac’s spirit did not flag. He worked his way from a wheelchair to a walker, then from a walker to two crutches, and then from two crutches to one, which he continues to use today. Edwards marveled at his determination: “His whole attitude toward everything is, ‘I’ll take a risk, I can overcome this.’”
Zac didn’t stop there. In 2006, for his high school senior project, he set out to climb Mt. Whitney, the highest peak in the lower 48 states, to raise money for pediatric brain cancer research. He organized a team of 12 mountaineers and solicited more than $18,000 in donations for the Lucile Packard Foundation for Children’s Health. Using two hiking poles to navigate the steep and rocky terrain, Zac conquered the mountain. He is scheduled to graduate from the University of Arizona in 2010 with a double major in creative writing and Italian.
Zac’s success reminds Edwards why he challenges himself in the operating room.
“It would be much easier to say, ‘We’ve done everything we can, we’re very sorry,’” he said. “But when we can take somebody who is headed toward more disability or death, turn them around by doing something non-standard, and end up with a person who can accomplish this much, it restores our faith in what we do. This is the reason for trying to stay on the cutting edge of neurosurgery.”
Zac’s cancer has not reappeared.
Stanford Medicine integrates research, medical education and health care at its three institutions - Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.