©2004 The Repository

MASSILLON —— Washington High School’s graduation starts in less than an hour and Pam Shaw is still running down a final checklist for her son.

Cap and gown. Check.

Tassel. Check.

Camera. Check.

Ventilator, ice pack, urine bottle.

Check, check, check.

“I didn’t have to pack this much stuff when you were a baby,” she said, stuffing supplies into a backpack.

On this brilliant May Sunday, Zane Shaw will do what four generations of his family have done: Graduate from Washington High School. And he’ll do it while trying to do what his brother, father, uncle and grandfather couldn’t do: Survive amyotrophic lateral sclerosis.

ALS, also known as Lou Gehrig’s disease, attacks the nerve cells that carry signals from the brain to the muscles. In time, the body is paralyzed, and the muscles waste away from lack of use. About 5,000 people are diagnosed with the disease every year; about half of them die within two years of diagnosis.

There is no cure.

Without warning

The Shaw family’s nightmare started subtly a decade and a half ago.

Zane’s uncle, David Shaw, came down with the disease in 1987. When he died Jan. 2, 1988, doctors labeled it a sporadic case of ALS because there was no family history of the illness.

The family mourned, but no one thought to worry. Ninety percent of ALS cases are sporadic; they just come without warning.

Then, in 1999, Zane’s grandfather, Robert, was in a car accident. He was just shy of 60 years old, and there was no hint that he was sick. An examination after the accident revealed signs of the disease.

Zane’s family moved to Massillon from the tiny Ohio River town of Bridgeport to help him. More tests were done, and the diagnosis was complete.

ALS killed Robert Shaw by the spring of 2000.

Bill Shaw, Zane’s father, had genetic testing done to determine whether he had a gene thought to be linked to the disease. The test said he didn’t.

But not long afterward, Bill started to have trouble talking and swallowing, then lost control of his other muscles. Ryan, Zane’s brother, also began to have similar problems.

“He wanted gray hair so bad,” Pam said of her husband. “We maybe found one or two before he died.”

Bill was 37 when he died the day after Thanksgiving 2001. Ryan, 19, died a few weeks later on the day after Christmas.

Drastic change

The Stark Summit Ambulance paramedics take Zane out the back door of his house to transport him to graduation ceremonies at Paul Brown Tiger Stadium. Pam climbs into the back of the van with him for the short ride.

“Two years ago, he was fine,” she said. “Now he’s completely disabled.”

The first hint of illness was that Zane slurred his words and complained about having trouble swallowing.

“It was like ‘no, this can’t be happening,’ ” Pam said. “Not again. He’s all I have left.”

In August 2002, his 6-foot-4-inch body weighed 285 pounds, strong enough to carry his ill father on his back. By January 2003, he was down to 160 pounds.

His face is now devoid of expression. He can’t talk. He can move his hands and feet, but his arms and legs are flaccid.

Zane was always quieter than his older brother, Ryan, who loved to wrestle and play football, his mom said. Zane tried to keep up, but asthma held him back from athletics.

So he turned to music instead. His favorites ranged from Garth Brooks to the Village People to Barry Manilow to Lawrence Welk.

Zane couldn’t sing, and his attempts at the trombone “sounded like a cow dying,” Pam said, but in the eighth grade, he started playing the bass drum. He moved on to the cymbals and became the fourth generation of his family to play in the Tiger Swing Band when the family moved to Massillon.

In time, he moved up the ranks to play snare drum. He also started playing the piano and writing percussion arrangements.

“He just made amazing progress between his freshman and junior years,” percussion director Chris Nussbaum said.

In fact, he traveled with the band to Florida during spring break last year and played in its 2003 Christmas show, even though he was having trouble walking.

This winter, he auditioned for the indoor drum line. He made it, but he didn’t take the spot because he felt he couldn’t see it through, Nussbaum said.

Everyone at the school is praying that Zane makes it a little longer or recovers, if that’s possible, Nussbaum said.

A day in a chair

The class of 2004 almost has its wish. The transport van is parked on the track and everyone stands at attention for “The Star-Spangled Banner.”

Inside the van, there is little time for ceremony. Pam puts a plastic tube in Zane’s nose and mouth to suction out the fluid that collects in his nasal passages and lungs.

Living with ALS is an hourly battle. Until the beginning of 2004, Zane was still going to school, but his condition has deteriorated to where he now spends every day in a reclining chair in his room. Most of the time, he watches television. He likes soaps and “American Idol.”

Old band pictures, NASA memorabilia and cards from well-wishers make the room a little more comfortable.

Every day starts with liquid Tylenol, two orange juices, antibiotics and Alka-Seltzer Cold and Sinus given through a feeding tube. In the afternoon, Pam adds more nutrients, liquids and a cocktail of liquid vitamins.

Zane’s girlfriend, Luanne Harmon, comes by in the afternoon or calls him on the phone. Zane can’t talk, but they’ve worked out a system of beeps using the phone: One means yes, two means no, and so on, she said.

Luanne and Zane met in a sophomore English class about a month after Ryan died. She has stuck by him, even as other friends have stayed away, not knowing what to say.

“We take it one day at a time,” Luanne, 18, said. “I just want him to get better.”

Every few hours, either Pam or Luanne suctions the fluid from his lungs, a task that needs to be done even in the middle of the night.

Leaving the house is a dangerous luxury, as the family learned when Zane traveled to see a specialist at the Muscular Dystrophy Association Clinic at MetroHealth Medical Center in Cleveland.

The trip to the hospital went fine, but on the way back, Zane’s portable ventilator started a high-pitched beep. The battery was failing, and they were only to Akron.

Pam called Zane’s respiratory therapist to ask what to do. If the battery went, the therapist said, Pam would have to remove Zane’s tube and breathe into his neck.

“We were doing 80 (mph) down Route 21,” Pam recalled. “Zane had his fingers crossed.”

The van got home safely.

Strong enough

The procession has begun. The graduates file onto the field in orange gowns and black gowns, but Zane stays in the air-conditioned van. Pam jumps out with a disposable camera to snap photos of Zane’s friends.

“That’s one strong lady,” School Superintendent Al Hennon said.

It has been a tough year for Massillon. Two members of the senior class died this year, as did a beloved strength coach. As much as the school grieves, the families grieve more.

Pam comforts herself in the knowledge that she still has her son, but some hours are stained darker with guilt and anger.

She has trouble remembering how Bill, Ryan, and Zane sounded when they could talk. She wonders why her genes couldn’t have countered the ones responsible for her sons’ disease.

“For some reason, the good Lord thinks I’m strong enough, but I disagree,” she said.

God doesn’t want to be surrounded by old, decrepit people, she tells herself. Her son is merely on loan, and the due date is getting closer. She has been here before; she knows what to expect.

“You can’t blame yourself, but as a parent, that’s automatic,” she said. “You’re supposed to kiss their boo-boos and make it better. I can’t do that. I’ve done it, and it doesn’t get anywhere.”

A few weeks ago, Luanne found supplements for sale on the Internet while doing a search on ALS. The Web site included testimonials from patients who said their conditions had improved with them. It costs $324 for a month’s supply of shark oil, coral calcium and berry extracts.

The evidence that they work is anecdotal at best, Pam said, but it can’t hurt.

She said she has already noticed a change since Zane started taking them. He can hold a phone and lift his right leg across his left leg.

She wishes the doctors had told her the supplements exist.

“If it even gives him a few months, it’s still better than a death sentence,” Pam said.

On Thursday, Zane celebrated his 18th birthday. As an adult, he will be able to make his own decisions about his life. He could chose to die, forgoing the ventilator as his brother and father did when their conditions deteriorated.

But Pam remains hopeful.

“I told him that next year, when he’s well enough, we’re going to get a chocolate cake with chocolate icing,” Pam said. “I’m not giving up.”

Processional

A thin veil of clouds has stretched over the stadium. The air is a bit cooler, and Zane will be able to go out on the field.

“What a year it has been,” Hennon tells the crowd. “We celebrate the lives of those here and celebrate the lives of those we have lost. In all of those things, I believe we must celebrate change.”

The school is blessed that Zane is able to graduate this day, he said.

Pam gets Zane into his black gown and arranges the mortarboard on his head. And then a glitch: The ventilator starts to beep — the battery is starting to go again. This time, Pam is prepared with a backup.

The graduates are steadily marching.

Jana Marie Shaw.

Travis Lee Shaw.

Zane’s great uncle, Paul Matson, guides Zane’s wheelchair to the appropriate place in the line.

Zane Alexander Shaw.

The cheers start in the stands and pour down onto the field. One by one, Zane’s peers rise to their feet, clapping as he is wheeled down the 50-yard line. The emotion rolls back into the stands, where the crowd is also on its feet.

An old band mate reaches over and flips the tassel on Zane’s hat. Pam excitedly holds his diploma for him to see, the rice paper almost blowing away in the wind.

Then he’s into the van and gone. Off to have a party with his family members.

“I would hate to cut him out of everything,” Pam said. “He’s earned the right to have the recognition.”