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The Boy Behind the Mask

Tom Hallman Jr.

Photos by Benjamin Brink
The Oregonian   October 4, 2000, Part 4

“I am Sam, Sam I am”

The doors to Operating Room 16 opened with a bang, and two intensive-care nurses pushed Sam Lightner’s gurney into the hallway, maneuvered it to their left and toward an elevator.

Behind them, a nurse tossed bloody sponges and towels into a bucket on the floor. Another nurse put the final touches on official reports, glancing at the wall clock to note that the boy was leaving the room just after 12:30 a.m. on July 7, 2000. Thirteen hours had passed since a highly specialized team of world-class surgeons had begun Sam’s operation on the morning of July 6.

A thick bandage—brilliant white except for a streak of red left by the blood still oozing through sutures on his neck—encased Sam’s head. An IV line pumped drugs and painkillers into his body. He was heavily sedated, not expected to stir for at least the next 36 hours.

Dr. Jennifer Marler, one of Sam’s three surgeons, pulled off her surgical gown and gloves. In her blue surgical scrubs, she hurried after the bed and pushed her way into the elevator. She wanted be next to Sam when he arrived in the Intensive Care Unit.

The elevator doors opened, and nurses wheeled Sam into a private room. Quickly they plugged lines running from his body into a bank of monitors. They adjusted the screens, and Marler motioned to the nurses. They followed her to the nurse’s station.

She opened Sam’s file and pulled out a color photograph taken in April, when Sam had first been evaluated at Boston’s Children’s Hospital. Sam, Marler explained, was a 14-year-old from Portland, Ore. He’d been born with a venous malformation—a bulging mass of blood vessels and tissue—on the left side of his face. And this, she said, is what he had looked like. She dropped the photograph on the counter. The nurses murmured.

Marler left the file on the counter and walked back into Sam’s room. The frail boy’s body barely filled the bed. His head had swelled to the size of a basketball, completely cloaking his features. Never, Marler told nurses checking on Sam, had she seen a head that big. Make sure it was always supported, she told them. If it somehow dropped off the bed, the weight could cause a spinal injury.

Marler wondered what Sam would look like when the swelling went down in a month. The goal had been to remove the tissue mass, setting the stage for a future surgery on the underlying bone. This first stage of his facial reconstruction might make Sam look 50 percent better, the surgeons figured.

But 50 percent improvement on a facial deformity such as Sam’s— the worst Marler had ever seen—still left a lot of work undone. And Sam was only 10 weeks from his first day at Portland’s Grant High School, a day when he would walk into a mob of judgmental adolescents who’d never seen him before.

Marler remembers standing over the boy’s bed and wondering: Was 50 percent enough?

*   *   *

When Sam wakes up after surgery, he can communicate only by pressing programmed keys on a small computer suspended in front of his face. He presses Button No. 1 to say, “I hurt.”

On Saturday, July 8, Sam Lightner stirred. His mother, hovering over him, called his name. He briefly opened his eyes before slipping back to sleep. Sam, unable to speak, was supposed to communicate with a small computer. Four responses—“I hurt,” “I need to go to the bathroom,” “yes” and “no”—had been preprogrammed. Sam had only to lift a finger and push one button to answer.

Debbie Lighter asked Sam how he felt.

Sam slowly raised a finger and punched button No. 1.

The pain, nurses told his mother, would be severe for at least three weeks. Even after he left the hospital, he would need painkillers.

That afternoon Marler showed up at the hospital. It was her day off, but she wanted to check on Sam. She recalls reminding herself, as she made her way to the ICU, to look confident, to hide her worry from the Lightners.

The surgery had been the most difficult operation of the lead surgeon’s career and one that had tested the entire team’s resolve. Sam’s anatomy was abnormal, the malformation just a jumble of tissue, blood vessels and nerves. Because X-rays don’t show soft tissue, the nerves lay concealed in the surrounding mass. Damaging a key nerve would have paralyzed the left side of Sam’s face. If that had happened, Sam would have lost the ability to blink his eye, to crinkle his forehead or to smile.

She checked in at the nurse’s station, received an update on Sam and then walked to his room.

She remembers the Lighters standing by the bed, looking at their son. A line from a ventilator—the machine was still breathing for Sam— was hooked into his tracheotomy, the hole in his throat that bypassed the tissue mass. The hole would remain until Sam completed all his surgeries.

Marler made small talk with the Lightners, wondering how she could check on Sam’s nerves. She felt good about the branches leading to his eye and forehead. But what about the branch to his mouth? That area had been hellish in Operating Room 16. She had to know, but Sam seemed to be sound asleep.

She asked if Sam had been awake at all. Yes, said Debbie, he’d woken up enough to stir when she spoke.

Can you make him smile? asked Marler. I need to see if he can smile.

Debbie Lightner leaned over Sam’s bed, moved her head closer to her son’s. Marler inched in right behind. His mother called to Sam.

The only sound in the room was the steady whoosh from the ventilator.

Marler saw the boy’s eyes flutter. Good sign. Try again, she told Debbie.

Sam, Debbie Lighter said, I need you to smile for me.

There was no response, and Debbie Lightner tried again. Sam, she said, smile.

Then, slowly, the outer edge of his mouth began to curl.

And Sam Lightner smiled.

*   *   *

Before Sam had his surgery he was measured for a mask that would fit over his head and help the left side of his face heat in the best possible position. It’s hot, it itches, and a lump in the fabric hurst. If it’s not cushioned Sam wears it reluctantly, and only when he sleeps.

Eight days after surgery, an internist walked into Sam’s room. The time had come to remove the bandages.

The surgeons who had operated on Sam had told the Lightners to be realistic. The unveiling would be anticlimactic, even disappointing. Sam’s face had taken a beating in the surgery. The buildup of internal fluids would make his face look more distorted than at any time in his life. For the next two months, he would wear an elastic mask each night to force his face into shape and to combat the swelling. The true results, they said, would be revealed in late September or early October.

Even so, Sam could hardly wait to see his new face. Later, he remembered the bandages coming off. The cool air on his face. The doctor backing away from the bed, and his mother moving in to help him.

He was unsteady, a colt learning to walk, and she guided him to the bathroom, to the mirror. The surgeons’ message played in his head— don’t get your hopes up. And then he looked at his reflection.

He focused first on the chin: It was rounder.

Then he examined the entire left side of his face: For the first time in more than a year, he could actually see his left ear, huge and distorted, because the tissue mass that had obscured the ear was gone.

Sam turned to his mother. He smiled, raised his hands to give her a thumbs-up sign. Then she led him back to bed.

Days later, doctors released Sam from the hospital, although they asked that he stay in Boston for several days so that he’d be close to the hospital if an infection set in. Painkillers made the days bearable; so he and his mother explored a museum and visited Fenway Park to see where the Boston Red Sox played.

Then, on July 19, the day before they were to fly home, he felt a lump on his chin.

He showed his mother. When she touched his chin, it hurt. She called the hospital. She was told to bring him right over.

She and Sam walked three blocks from their hotel, checked in and took a seat in the waiting room.

Dr. Jennifer Marler remembers that she was on her way to the laboratory when she spotted the Lightners sitting on a bench. She walked over and asked how they were doing. Debbie explained. Marler asked Sam how he felt. He couldn’t speak. He shrugged his shoulders. He cried.

Marler told them to wait there. She walked over to the receptionist, picked up the telephone, called the lab and canceled her appointment—she had something more important to take care of. She checked with the receptionist, found an empty examination room and collected the Lightners.

Once in the room, she turned the lights low to calm Sam. The mass under his chin, she explained, was not a growth but a buildup of fluid.

He was fine.

What she needed to do, she explained, was to drain the fluid. She administered a local anesthetic, and—while she waited for it to take effect—studied this boy who had dropped into her life 10 months before when a package and a plea for help from Tim Campbell, Sam’s Portland doctor, arrived in her office.

Their relationship had begun with a simple photograph, one Campbell had taken as a way to show the desperation of Sam’s situation. That photo had haunted Marler. It was the photo that led her to repeatedly petition the reluctant team of elite surgeons who would ultimately give in and bring Sam to Boston. It was that photo that would ultimately change his life … and hers.

But on this day in July, she was thinking of a different photo— the picture of a new Sam, a post-surgery Sam, that would join the gallery of photos on her office wall. There his face would appear among the 20 that most touched her during her medical career, the children—some dramatically transformed and some who failed to survive—who had come to her for help. After all she’d been through with this boy, one day Marler wanted to hang a picture of Sam on that wall.

She touched his chin. He did not flinch. She reached for a syringe to drain the fluid from his chin. She wanted to distract him when the needle pierced his skin.

Sam, she remembers saying as she jabbed him, I want you to promise to send me a photograph of you when you get home.

She finished her work, and they all moved to the door, ready to go their separate ways. Marler didn’t know what to say. And then she realized there was nothing to say. She spread her arms wide, pulling Sam close. She hugged him tightly, and tears rolled down her cheeks.

*   *   *

Debbie cuts Sam’s hair

Debbie Lightner has been trimming Sam’s hair all his life. She spreads newspaper on the kitchen floor, places a chair on the paper and spritzes Sam’s hair with a plastic spray bottle.

The Frontier Airlines jet touched down in Portland on July 20th. Sam Lightner made his way up the aisle and into the crowded terminal. He saw his father, brother and sister carrying balloons reading: “Welcome Home.” They all hugged Sam and told him he looked good.

The surgery was behind in more ways than one. The family’s insurance company, negotiating directly with Children’s Hospital, had reached final resolution on the cost of the surgery. The grand total was $75,000.

It was time to celebrate.

But Sam felt listless. The skin that had been peeled back during surgery, which had been so healthy in Boston, was pale and waxy. His mother remembers feeling his forehead on the flight and thinking he was running a slight fever.

On July 25, the Lightners took Sam to see Dr. Tim Campbell, the pediatric surgeon who had operated on him when he was a day old, the doctor who had sent the plea for help to Jennifer Marler.

Sam shuffled into the waiting room, barely able to pick up his feet. He found the first chair, fell into it and leaned against the wall. He closed his eyes and curled his legs under him. A bead of sweat glistened on his forehead.

The receptionist called his name. With effort, he pushed himself out of the chair and followed her down the hallway to the examination room. His parents trailed behind. He climbed onto the examination table and let his head sag forward. His mother walked over and ran her hands through his brown hair.

The door opened and Campbell, in his light-green surgical scrubs, strolled in carrying Sam’s file.

“Sambo, you old dog,” he said. “How are you?”

Sam slumped against the wall.

“He’s not feeling well,” Debbie Lightner said. "“He had a fever of about 100 this morning. And he seems so tired. I don’t know if it’s from the trip home or what. But he just doesn’t seem himself.”

Campbell put the file down, washed his hands and walked over to the examination table. He leaned close to Sam.

“Sambo,” he said gently, “let me take a look at you.”

Sam raised his face.

“He looks a little swollen,” he said, “but that’s to be expected. Sam, how about lying down for me?” He ran his hands over Sam’s face, checked the file and then walked over and touched Sam’s forehead, feeling the tube the Boston surgeons had sutured under the boy’s scalp. “I think it’s time we take that drain tube out,” he said.

“Now this might hurt a bit, Sam,” Campbell said. “But it’s going to be over quickly.”

Sam tried to sit up, struggling, kicking his legs. “No,” he moaned. “No.”

His father held Sam’s legs. His mother moved to grasp his arms. Even so, he struggled and wiggled. Campbell yanked twice and drew out a clear line. “OK, big boy,” he said. “It’s over.”

Sam sat up, tears streaking his face.

“He’s lost 10 pounds,” Debbie Lightner said. “Some, I know, is from the surgery. But …”

Campbell asked if Sam was eating well, and when he heard that the boy’s appetite had lagged, he sighed.

“I think I’m going to put Sam in the hospital,” he said.

“No,” croaked Sam. “No. Please.”

Campbell patted Sam on the shoulder, kept his hand there and talked to Sam’s parents. “I want him in there for a day or two,” he said. “I want a blood culture, a blood count and I want him on IV antibiotics. I’m sure that blood count will be way off. I think he has an infection. We have too much invested here to take any risk.”

Sam sobbed, appalled that—after all the painful days he’d spent bedridden in Boston—he was headed back to the hospital.

“I know he’s not happy about it,” Campbell said. “I know he wants to go home. But he can get real sick, real fast. Those germs could spread through his body and cut off his windpipe. It could be life-threatening.”

Campbell patted Sam once on the shoulder. “I’m sorry, Sam,” he said. “I really am. Don’t give up, Sam. We’ll lick this.”

“At least we’re home,” David Lightner told his son.

“And it will only be a couple days,” Debbie Lightner added.

An attendant pushed Sam’s wheelchair across an atrium and into the main hospital building. A nurse poked at the boy with a needle while Sam cried and thrashed. She finally connected with a vein and started antibiotics flowing.

Sam checked into a hospital room and spent the next two days watching TV and reading magazines.

The swelling went down. His temperature dropped. And he started slipping out of bed to stroll the hospital halls, dragging his IV setup along with him.

Two days later, as Campbell had promised, Sam checked out of Emanuel and headed for the family home in Northeast Portland. When he got to the house, he looked in the bathroom mirror. With the swelling receding, the left side of his face was noticeably reduced. The bottom of his chin, once distended and pointed, was flat and smooth. Even his left eye, which the mass had pushed and distorted, seemed to be in a more normal position. His parents told him he looked great.

But …

When he scrutinized his face, looking at himself the way he knew strangers would, he realized that he didn’t look dramatically different from before the surgery.

The skin on the left side of his face, even though relieved of the huge mass of tissue that had once supported it, still formed a dome over the deformed bone underneath it. His jaw remained out of alignment, and it still distorted his mouth and teeth. Removing the tissue mass had further exposed his left ear, large, spongy and misshapen.

The surgeons would turn to all those problems the following spring. But in a month, on Aug. 24, 2000, the freshmen will register at Grant High School.

*   *   *

Even though the first round of his surgery is finished, Sam still has a tracheotomy that requires some special attention during the day. So he and his mother visit the school nurse a week before classes begin at Grant High School to work out the details of his care.

The boy sits on the living-room sofa, lost in his thoughts. His parents are at work. His younger brother and sister are enjoying the last two weeks of summer vacation. He moves through the house, looking at the clock, waiting for his mother to come home and take him to Grant.

Today he will register, officially joining the class of 2004. His sister asks him a question, but he ignores her. He has too many things on his mind.

He walks up to his bedroom, the one with the toy license plate on the door that reads “Sam.”

He hasn’t been back to Grant, Portland’s largest high school, for an official event since the open house on Feb. 3, 2000. That night, he joined more than 1,500 students and parents. He was nervous then.

And now …

He stands and checks out his shirt. Brand-new—pulled from his closet for the first time just for this day. He’s showered, and his hair is neatly combed. He walks downstairs and looks at himself in the mirror. He combs his hair again, carefully pressing the last stubborn strand into place.

He walks into the kitchen to make himself lunch. He opens the refrigerator door—glancing at the list of chores his parents expect him to do each day to earn his $5 weekly allowance. He’s thrown the dirty clothes down the chute to the basement. He’s cleaned the bathroom countertop and swept the floor. He’s picked up the basement and vacuumed the upstairs hallway.

He pulls out a jar of peanut butter and a jar of jam and makes himself a sandwich. His mother walks in the door as he’s finishing it up, and the phone rings. Three of Sam’s Gregory Heights Middle School classmates have gathered at a neighbor’s house and are calling to let him know they’re ready for their ride. Sam’s ready, too. He smoothes his shirt once more and reaches to touch his neck. But when he pulls his hand away, he sees blood on his finger.

Not today.

Not on this day.



He points to his neck. Blood oozes from one of his stitches. He dabs at it with a napkin.


His mother searches for a Band-Aid.

“No one will see this,” his mother says as she gently pushes the strip over the stitch. “Don’t worry.”

The two of them walk out the front door and climb into the family’s old Honda, back down the driveway, turn through tree-lined streets and pull up in front of a wood-frame house. Three strapping young men jump down the steps, move like athletes toward the Lightner car and jump into the back seat. Sam sits next to his mother in front. At 76 pounds, he looks like a little brother along for the ride.

Just as it did on orientation night, traffic clogs the streets around Grant. So Debbie Lightner has to park five blocks away. Sam and his friends step onto the sidewalk and walk through the neighborhood.

On that February evening nearly seven months before, darkness cloaked the long walk, and Sam covered the distance almost invisible to everyone gathering at Grant. Today, the sun shines brightly on streets filled with students.

Sam touches the Band-Aid on his neck. He adjusts his shirt collar, trying to hide it, but nothing works.

He walks on, his pals towering over him. With Grant looming in the distance, all of them grow quiet. The group spreads out as the boys climb the front steps. They head for separate metal doors.

Sam pulls one of the doors open and steps into the front hall. Linoleum floors. Trophy cases. Metal lockers. Noise and laughter and chaos and all the urgency that is about being 14 years old.

Sam’s friends disappear into the crowd, and he stands alone in the midst of the milling mob. An adult hollers instructions, and the students form a rough line that engulfs Sam where he stands. His friends pay no attention to him as they move up and down the line to talk with buddies they have not seen in months.

The line snakes toward the cafeteria, where the students will get their schedules and receive their student identification cards.

Parents show up to pay fees. More students arrive and join the line. The crowd clogs the hall, and someone announces that it will be hours before everyone is registered. Adult volunteers herd the students along, shouting instructions. A teacher brings out a fan to keep everyone cool.

Sam watches new students arrive and walk past him toward the end of the line. He turns to his left, toward a bank of lockers. From this angle, no one can see the left side of his face. Even the students who stand next to him seem unaware of his presence.

“Hey there.”

Sam turns. A Grant administrator motions to him and then walks over.

“How you doing?” he asks as he sticks out his hand.

“Fine,” says Sam, shaking hands while wondering who this man could possibly be.

The man raises his hand, starts to gesture toward Sam’s face, then thinks better of it and lets his hand drop to his side.

“Say, you don’t have to wait here in line,” he says. “I mean …”

The words hang in the air.

“Let me take you down the back way,” he says, rattling a set of keys. “I can get you in and out of here in a couple minutes. Otherwise, you’re going to be here for a couple hours. No reason you should have to wait out here in front of everyone. I know how you must be feeling right now.”

The man steps closer, putting his arm around Sam’s shoulder.

“Let’s go,” he said. “You don’t need this.”

Sam weighs his options and makes a quick response that will be colored, as such things are, by everything that has come before. The years of living with his deformity. The decision to risk a life-threatening surgery. The choices he has made—to take a great chance and to confront life head on. “I am Sam,” read the Dr. Seuss line the nurse posted over his isolette when he was born. “Sam I am.”

He wriggles out from under the man’s arm.

“No,” he says.


“I’ll wait with the rest of the students,“ Sam says.

“But you don’t have to.”

“I’ll wait,” Sam says firmly. “This is where I belong.”

*   *   *

On the first day of school, Sam got to Grant High a few minutes early and navigated to the room listed as his first-period history class. When he arrived, no one else was there and the door was locked—his schedule had the wrong room number.

The line moves, and Sam watches the administrator walk away. There is no turning back. Sam is carried, step by shuffling step, toward the cafeteria. He descends a flight of steps, walks through a set of double metal doors and pauses, looking out at a sea of students.

Then the line carries him forward to the first of several registration stations along the cafeteria’s wall. Brian Doran, Sam’s friend from Gregory Heights, spots him in line, hurries over and hands him a green piece of paper with a locker number and combination on it. Brian, who arrived earlier, has already claimed the locker and requested Sam as a partner.

Sam feels someone touch his shoulder and turns to face Molly Paterno, an old friend from his neighborhood.

“I was thinking about you all summer, Sam,” she says. “I wondered if you had the surgery.”

She studies him.

“Oh, Sam,” she says. “You look great.”

Sam moves more easily as the line works its way from station to station. He studies his schedule.


Emilie Bushlen bustles up and leans close.

“Sam, can I see your schedule?”

He hands her his slip of paper.

“Sam,” she squeals. “We got word-processing together.”

He blushes.

The line moves forward. The next stop is for yearbook pictures. Sam looks at the order form, trying to figure out what picture package to order. He selects Package E, the one that will give him two extra prints. One will go to Dr. John Mulliken, the lead surgeon in Boston.

The other has a place waiting for it on Dr. Jennifer Marler’s wall.

He hands the form to the photographer, who tells him where to sit and how to pose. “OK, kiddo,” the photographer says. “Here we go.”

He lifts the camera.

Sam Lightner looks straight ahead. This is for the yearbook. This is for history.

He smiles. Broadly.

And a brilliant flash illuminates his face.