Tom Hallman Jr., The Oregonian
Posted 1/28/2002 12:00:00 AM

2001 Distinguished WritingAward for Non-Deadline Writing

Tom Hallman Jr. of TheOregonian, Portland

The Boy Behind the Mask

Part One:At a certain age, nothing is more important than fitting in — Sept. 30, 2000
Part Two: Acceptance sometimes comes in the struggle to achieveit — Oct. 2, 2000
Part Three: The risks we take can tell us who we are —Oct. 3, 2000
Part Four: “I am Sam; Sam I am.” — Oct. 4, 2000

PartOne: At a certain age, nothing is more important than fitting in

Saturday, September 30,2000

The boy sits on the livingroom sofa, lost in his thoughts and stroking the family cat with his fragilehands. His younger brother and sister sit on the floor, chattering and playingcards. But Sam is overcome by an urge to be alone. He lifts the cat off hislap, ignoring a plaintive meow, and silently stands, tottering unsteadily ashis thin frame rises in the afternoon light.

He threads his way towardthe kitchen, where his mother bends over the sink, washing vegetables for supper.Most 14-year-old boys whirl through a room, slapping door jambs and dodgingaround furniture like imaginary halfbacks. But this boy, a 5-foot, 83-poundwaif, has learned never to draw attention to himself. He moves like smoke.

He stops in the door frameleading to the kitchen and melts into the late-afternoon shadows.

He watches his mother, hummingas she runs water over lettuce. The boy clears his throat and says he’s nothungry. His mother sighs with worry and turns, not bothering to turn off thewater or to dry her hands. The boy knows she’s studying him, running her eyesover his bony arms and the way he wearily props himself against the door frame.She’s been watching him like this since he left the hospital a few months before.

“I’m full,” he says.

She bends her head towardhim, about to speak. He cuts her off.

“Really, Mom. I’m full.”

“OK, Sam,” she says quietly.

The boy slips behind hismother and steps into a pool of light.

A huge mass of flesh balloonsout from the left side of his face. His left ear, purple and misshapen, bulgesfrom the side of his head. His chin juts forward. The main body of tissue, lacedwith blue veins, swells in a dome that runs from sideburn level to chin. Themass draws his left eye into a slit, warps his mouth into a small, invertedhalf moon. It looks as though someone has slapped three pounds of wet clay ontohis face, where it clings, burying the boy inside.

But Sam, the boy behindthe mask, peers out from the right eye. It is clear, perfectly formed and adeep, penetrating brown.

You find yourself instantlydrawn into that eye, pulled past the deformity and into the world of a completelynormal 14-year-old. It is a window into the world where Sam lives. You can imagineyourself on the other side of it. You can see yourself in that eye, the childyou once were.

The third of Sam’s facesurrounding his normal eye reinforces the impression. His healthy, close-croppedhair is a luxuriant brown, shaped carefully in a style any serious young manmight wear. It’s trimmed neatly behind a delicate, well-formed ear. His rightcheek glows with the blushing good health that the rest of his face has obscured.

The boy passes out of thekitchen, stepping into the staircase that leads to the second floor. A raggedburst of air escapes from the hole in his throat — a tracheotomy funnels airdirectly into his lungs, bypassing the swollen tissue that blocks the usualairways. He walks along the worn hallway and turns into his room, the one withthe toy license plate on the door. It reads “Sam.”

The Northeast Portland house,wood-framed with a wide front porch and fading cream-colored paint, is likethousands of others on Portland’s gentrifying eastside. Real estate prices havesoared, but the Lightners still need new carpets in every room and could usenew appliances. Although she’d rather stay home with the children, Debbie Lightnerworks part time as a bank teller. The paycheck helps, but she really took thejob for the health insurance.

From upstairs, Sam hears12-year-old Emily and 9-year-old Nathan laughing. The kitchen, though, is silent.The boy figures his mother and father are talking about him and this night.For months Feb. 3, 2000, has been circled on the family calendar that hangson a kitchen wall.

He grabs a small foam basketballand throws up an arcing shot that soars across the room and hits a poster tackedto the far wall.

His mother made the posterby assembling family photographs and then laminating them. In the middle isa questionnaire Sam filled out when he was 8. He had been asked to list histhree wishes. He wanted $1 million and a dog. On the third line, he doodledthree question marks — in those oblivious days of childhood, he couldn’t thinkof anything else he needed.

Finally, his mother callsout. His teeth are brushed, his face washed. He runs his left hand through hisbrown hair, parting it to the right.

He must imagine what helooks like. There’s no mirror to examine his face.

In this boy’s room, there’snever been a mirror.

“OK,” his father replies.“Let’s go.”

His sister and brother watchfrom the window as Sam and his parents walk to a Honda Accord that has 140,000hard miles on the odometer. The boy gets in the back seat, and the Honda backsdown the driveway.

Just a few blocks from home,Sam senses someone looking at him. After a lifetime of stares, he can feel theglances.

The Accord is stopped ata light, waiting to turn west onto Northeast Sandy Boulevard, when a woman walkinga poodle catches sight of him. She makes no pretense of being polite, of avertingher eyes. When the light changes, the woman swivels her head as if watchinga train leave a station.

Grant High School’s openhouse attracts more than 1,500 students and parents. Even though they’ve comeearly, the Lightners must search for a parking place. Sam’s father circles thestreets until he finds one nearly 15 blocks from the school.

The family steps out ontothe sidewalk and walks through the dark neighborhood. As Sam passes under astreetlight, a dark-green Range Rover full of teen-age boys turns onto the street.A kid wearing a baseball cap points at the boy. The car slows. The windows fillwith faces, staring and pointing.

Sam walks on.

Soon, the streets fill withteen-agers on their way to Grant. Sam recognizes a girl who goes to his school,Gregory Heights Middle School. Sam has a secret crush on her. She has brownhair, wavy, and a smile that makes his hands sweat and his heart race when hesees her in class.

“Hi, Sam,” she says.

He nods.

“Hi,” he says.

The boy’s parents fall behind,allowing their son and the girl to walk side by side. She does most of the talking.

He’s spent a lifetime tryingto make himself understood, and he’s found alternatives to the words that areso hard for him to shape. He uses his good eye and hand gestures to get hispoint across.

Two blocks from Grant, kidsjam the streets. The wavy-haired girl subtly, discreetly, falls behind. Whenthe boy slows to match her step, she hurries ahead. Sam lets her go and walksalone.

Grant, a great rectangularblock of brick, looms in the distance. Every light in the place is on. Tonight,there are no shadows.

He arrives at the northdoor and stands on the steps, looking in through the windowpanes. Clusters ofgirls hug and laugh. Boys huddle under a sign announcing a basketball game.

Sam grabs the door handle,hesitates for the briefest of moments and pulls the door open. He steps inside.

He walks into noise andlaughter and chaos, into the urgency that is all about being 14 years old.

Into a place where nothingis worse than being different.

She struggled to sit upon the examination table. The baby, her doctor said, was larger than it shouldbe. Debbie watched him wheel up a machine to measure the fetus. She felt hishands on her stomach.

“Something’s wrong,” thedoctor said again.

He told Debbie he wouldcall ahead to the hospital and schedule an ultrasound. He laughed and told Debbiehe just wanted to be sure she wasn’t having twins.

The next morning, at theultrasound lab, the technician got right to work.

He immediately ruled outtwins.

Then, a few minutes intothe test, the technician fell silent. He repeatedly pressed a button to takepictures of the images on the monitor. After 30 minutes, he turned off the machine,left the room and returned with his boss. The two studied the photographs.

They led the Lightners downthe hall to a prenatal specialist. Their unborn child, he said, appeared tohave a birth defect. The ultrasound indicated that the child’s brain was floatingoutside the body.

He had to be blunt. Thischild will die.

Some parents, he said, wouldchoose to terminate.

No, Debbie remembers tellinghim. She and her husband were adamant that they would not kill this baby.

On Sunday, Oct. 6, 1985,six weeks before she was due, Debbie went into labor at home. David drove herto the hospital, and the staff rushed her to the delivery room for an emergencyCaesarean.

She heard a baby cry. Aboy. The boy they’d decided to name Sam.

She passed out.

When she came to, she askedto hold her child.

No, her husband said. Theboy was in intensive care. He needed surgery.

David handed his wife twoPolaroids a nurse had taken. A bulging growth covered the left side of the baby’sface and the area under his neck.

What is it? Debbie asked.

I don’t know, David said.But he’s alive.

When the Lightners arrivedat the neonatal ICU, they were led to an isolette, a covered crib, that regulatestemperature and oxygen flow. A nurse had written “I am Sam; Sam I am” — a linefrom “Green Eggs and Ham” by Dr. Seuss — and taped it to the contraption.

Wires from a heart monitorsnaked across the baby’s tiny chest. He was fragile, a nurse said, and theycouldn’t hold him.

The mass fascinated Debbie,and she asked if she could touch her son.

The nurse lifted the coverof the isolette, and Debbie reached down with a finger. The mass was soft. Itjiggled. Debbie thought it looked like Jell-O.

The nurse closed the cover.

Debbie and her husband returnedto her room, and she climbed into bed. She picked up one of the pictures herhusband had given her and covered the mass with her fingers to see what herson should have looked like. He had brown hair and eyes.

She wept.

Tim Campbell, a pediatricsurgeon known for tackling tough cases, walked into the ICU and peered intothe isolette. The boy had a vascular anomaly. They were rare enough, but whatthis tiny infant had was even rarer. The anomaly was a living mass of bloodvessels. And it had invaded the left side of Sam’s face, replacing what shouldhave been there with a terrible tangle of lymphatic and capillary cells.

The malformation extendedfrom his ear to his chin. Campbell knew there was no way to simply slice itoff, as if it were a wart, because it had burrowed its way deep inside Sam’stissue. Doctors knew little about such anomalies except that they were madeup of fluid-filled cysts and clots that varied in size from microscopic to asbig as a fingertip.

Campbell gently pulled thebaby’s mouth open. The mass swelled up from below and wormed its way into histongue, threatening to block his air passage. He could barely breathe, and onlyimmediate action would save him. He asked a nurse to direct him to the Lightnerroom.

Campbell introduced himself,explaining the surgery. He didn’t mince words.

I’m going to be in therea long time, the Lightners remember him saying. It’s risky. He’s little, andhe’s premature.

Campbell operated for sixhours and removed 1 pound, 10 ounces of tissue from under Sam’s neck. He operateda second time to remove bulk above his left ear and to ease his breathing witha tracheotomy tube. But there was no way, he told the Lightners, that he couldsafely remove the mass on Sam’s face.

Campbell had sliced awaya quarter of the infant’s weight. Baby Sam, who weighed 5 pounds after the surgeries,spent three months recovering in the hospital.

He was 3 when he first realizedhe was different. His father remembers Sam running up and down a hallway whenhe stopped in midstride and stared at his image in a full-length mirror. Hetouched the left side of his face, almost as if to prove to himself that hewas in fact that boy in the mirror.

He cried.

His parents had been expectingthis day. His father bent over and took Sam by the hand. He led him to a bedroomoff the hall. Debbie joined them. David lifted Sam onto the bed. And then hisparents told the little boy the complicated facts of his life.

Except for the deformity,Sam was normal in every way. But everyone outside Sam’s circle of family andfriends would have a hard time seeing beyond the mass of tissue on his face.

And so it was.

A little girl grabbed hermother’s hand when Debbie pushed Sam, in a stroller, onto an elevator. The girlstared at the little boy, pointed at him and then loudly told her mother to“look at the ugly baby.”

Bystanders often assumedSam was retarded. A woman asked Debbie what drugs she had taken during her pregnancy.Strangers said they’d pray for the boy. Others just shook their heads and turnedaway.

His parents went to anothersurgeon to see if he could reduce the mass. He removed some tissue from behindSam’s left ear but encountered heavy bleeding and closed up. Even then, theincisions wouldn’t heal. Sam bled for six weeks.

When the Lightners realizedtheir son would have to live with his face, they refused to hide him from theworld. They took him to the mall, to the beach, to restaurants. In NortheastPortland, where the Lightner family lived, people talked about seeing a strange-lookingboy. “That boy,” they called him.

The Lightners enrolled Samin the neighborhood school. Sam, his breathing labored, caused a stir duringregistration. Teachers worried about having the boy in their classes.

But he was an excellentstudent. He made friends, joined the Cub Scouts and played on a baseball team.He tried basketball for a year, but he fell easily because his head was so heavy.

When Sam turned 12, he toldhis parents that he wanted to change his face. They took him to Dr. Alan Seyfer,an OHSU professor who chaired the medical school’s department of plastic andreconstructive surgery. What Seyfer saw made him leery.

The mass was near vitalnerves and blood vessels that surgery could destroy, leaving Sam with a paralyzedface. Hundreds of vessels ran through the deformed tissue, and every incisionwould cause terrible bleeding. Sam could bleed to death on the operating table.

Nonetheless, Seyfer, whospent 11 years as a Walter Reed Army Hospital surgeon, wanted to help. And sohe scheduled Sam for surgery in June 1998. A month before he asked a friend,the chairman of the plastic-surgery department at Johns Hopkins Hospital inBaltimore, to join him.

A week before the surgery,Seyfer and his partner examined Sam one last time. They peered down his throatso they could study the mass without having to make an incision.

They didn’t like the view.

That afternoon, Seyfer metwith Sam and his parents and said he had made an agonizing decision. The surgerywas too risky. In good faith, he could not operate.

The news crushed Sam. Herealized he had always held out hope that a surgeon would pull him out of thehorrible spotlight that targeted him every time he went out in public. But no.He was trapped.

Sam Lightner pedaled hisbike as hard as he could, but his family zoomed ahead. His legs ached, and hepanted for breath. Even his younger brother could ride his bike farther andlonger.

Most days during this spring1999 vacation, Sam wanted to just lie in bed and watch television.

And when he spoke, his familykept asking him to repeat himself. No one — the desk clerk at Central Oregon’sSunriver Lodge, the woman in the gift shop — could understand him. He garbledhis speech, as if he were speaking with a mouthful of food.

But he wasn’t eating. Atdinner, he sat with his family, listening, picking at his food, waiting to golie down on the sofa. Over his protests, his mother took him into the bathroomand weighed him.

Five pounds, she said. He’dlost five pounds. But a later visit to his pediatrician turned up nothing.

Sam woke up one morningin pain. He touched his face and found it tender. The mass was growing. Hismother gave him Advil, but the mass continued to swell. Within a week, he couldn’tswallow the pill. He stuck his finger in his throat. His tongue felt bigger.By the end of the week, Sam cried continually.

A doctor removed a lumpwhere Sam’s shoulder met his neck, thinking the lump was pressing against anerve. But the pain continued.

On Sunday, Aug. 8, 1999,Sam came downstairs from his bedroom. He found his mother outside, sitting onthe front porch. He walked out and sat next to her, crying. His speech slurred,and he had to repeat himself. The pain, he managed to tell her, had spread acrossthe entire left side of his face.

The next morning, at thehospital, nurses poked and probed his face. He sat still while strange machineswhirled about his head. And then he waited while specialists reviewed the X-raysand CAT scans. They found nothing.

Sam refused to go home.Someone, he pleaded, had to help him.

Doctors admitted him andran more tests. Four days later, on Aug. 13, the mass awakened.

Pain racked Sam’s body.He tried to call for help but couldn’t speak. With his fingers, he reached up.His swollen tongue stuck several inches out of his mouth. He punched the buttonbeside his pillow to call for help.

He wrote in a notebook tocommunicate with nurses and doctors, a notebook his mother would later storeaway with the other memorabilia of Sam’s medical journey.

“I have no idea why. SinceI was a baby. I was born with this.

“When I cough hard, littlecapillaries burst and a little blood comes out.

“Don’t touch.

“Please, it hurts.”

He held out his arm so nursescould give him morphine. They fed him through a tube.

Then the door to his roomopened, and a new doctor walked in. The man asked Sam if he knew him. Sam shookhis head.

I’m Tim Campbell, the doctorsaid.

He’d been making routinerounds when he spotted Sam’s name on the patient board. Campbell hadn’t seenthe boy since he’d operated on him nearly 14 years before, the day after hewas born.

Dr. Campbell thumbed throughthe reports at the nurses’ station. He checked Sam’s chart. The boy weighed65 pounds — he was wasting away.

Campbell pulled up a chair.

How do you feel?

Sam wrote in his notebook:“Anything to stop the headaches.”

Anything else?

“I really don’t think thisis going to work out.”

The doctors are trying.

“Please try your hardest.”

Hang in there, Sambo.

“I’m in pain. It was reallybad this morning.”

Campbell made a note toorder more morphine.

“I hurt.”

And methadone.

“I’m tired.”

Try to sleep.

“Will it kill me?”

© 2000 The Oregonian. Reprintedwith permission.

PartTwo: Acceptance sometimes comes in the struggle to achieve it

Monday, October 2, 2000

Dr. Tim Campbell lookeddown into Sam Lightner’s face. The boy, he remembers thinking, was giving up.Unless something dramatic happened, he would die.

The 14-year-old lay motionlessin his bed at Portland’s Legacy Emanuel Hospital & Health Center. His bloatedface spilled across most of the pillow. His tongue protruded grotesquely fromhis mouth, and the swelling on the left side of his face wrenched one eye completelyout of position. In late summer of 1999, the deformity he’d carried since birthhad suddenly grown to life-threatening size, choking off his airway and esophagus.

Sam, Campbell remembersthinking in blunt medical slang, was “circling the drain.” He’d seen the samelook in children battling terminal cancer. At a certain point, they acceptedtheir fate and surrendered to death.

The doctor hurried backto his office, rummaged through his desk drawers and pulled out a slim bluebook, a list of every pediatric surgeon in North America. He flipped throughthe pages.

Campbell paused when hereached the résumé of Dr. Judah Folkman, a cancer researcher he’d met 30 yearsearlier when they were both young surgeons. Folkman’s research team had controlledtumors in mice by stifling the growth of the blood vessels that supplied them,causing a national stir and overwrought speculation that a cancer cure was athand.

Folkman planned to testhis technique on humans for the first time in May 1999. Campbell consideredthe fact that a wild excess of blood vessels had created Sam’s deformity. Maybe,he thought, Folkman’s strategy would work on the boy.

But Folkman, besieged bymore than a thousand desperate cancer patients a week, is fiercely protectiveof his time. He grants no interviews. A secretary screens all calls.

Campbell punched in thetelephone number listed in the blue book, hoping Folkman might grant a favorto an old friend. The secretary put him on hold. Then Folkman came on the line.

His response was discouraging.Sam’s malformation was fully formed, and his method worked only on growing tumors.But Folkman suggested Campbell call a pediatric surgeon who worked for him asa research fellow. Campbell scribbled out a name: Jennifer Marler.

She was a member of theBoston’s Children’s Hospital Vascular Anomalies Team, which treated malformationsjust like Sam’s. Pleas for help deluge that team, too, and the surgeons canrespond to only a fraction. But when Campbell reached her, Folkman’s name providedinstant access.

Marler suggested that Campbelltake some photographs of Sam and send them along with the boy’s medical file.Campbell should address the package to her to make sure it didn’t get lost inthe slush pile.

The best she could offerwas that she’d take a look.

Then Sam asked a question.

“Why is this happening?”

The psychiatrist had noanswer. Instead, he asked another question. Tell me how you feel about life,Sam remembers him saying. Is life unfair?

How stupid, Sam thought.His tongue was sticking three inches out of his mouth. He couldn’t eat. Hisleft eye bulged abnormally, reacting to pressure that seemed to build each hour.An IV drip line ran into his arm and pumped him full of drugs: morphine, methadone,Celebrex and nortriptyline — a combination of painkillers, anti-inflammatoriesand antidepressants. None of them helped. No one could tell him what was wrong.

Is life unfair?

“Sometimes.”

And then the swelling receded.Doctors couldn’t explain why, but the sudden eruption died down as mysteriouslyas it had come to life. On Sept. 2, 1999 — after a monthlong hospital stay —Sam went home.

But everything was different.Physically, Sam was a shell. He had lost 17 pounds and was down to 63 pounds.He could not speak. And the battle with the malformation had scarred him. Hismother remembers a listless child who wouldn’t stir from bed.

On Nov. 15, 1999, doctorsdetermined Sam was healthy enough to get back into his old routine. When hereturned to Gregory Heights Middle School, however, something had changed. Allthe talk in the hallways was about high school — girls, dances, sports. Beingpopular.

Life as Sam Lightner knewit was ending. All his classmates were obsessed with how they looked and howthey fit in. But for Sam, the issues every young teen faces were magnified athousandfold. He was moving out of the cocoon of familiarity that kept him amongfamily and longtime classmates, who could see past the disfiguring mass he carriedon his face. He was moving into a world of judgmental teen-agers and he wouldcarry with him a terrible handicap, a face drastically shortchanged of its abilityto reach others with a subtle expression, a slightly raised eyebrow, a flickeron the edge of his mouth. He was being cast among strangers who would turn awayfrom his alien features so fast that they would miss the boy behind the mask.

Like all teens, Sam’s perceptionof how others saw him would determine how he saw himself.

And when strangers lookedat Sam, they first fixated on the left side of his face, a swollen mass thatlooked like a pumpkin left in the fields after Halloween. His left ear was evenmore abnormal, a purple mass the size and shape of a pound of raw ground beef.His jaw, twisted. His teeth, crooked. His tongue, shoved to the side. His lefteye, nearly swollen shut.

When he walked to schooleach morning, he stopped at the crosswalk on Northeast Sandy Boulevard and watchedpassengers in cars and buses stare at him. When he walked through the neighborhood,he heard laughter and comments.

Once, a neighbor boy ledhis friends over to Sam’s house and knocked on the front door so the otherscould see Sam’s face.

In late August, a thickenvelope arrived in Dr. Jennifer Marler’s office. She noticed it was from aDr. Tim Campbell, an unfamiliar name, and tossed it aside. At the end of theday, after a brutal round of surgery, clinics and lab research, she was aboutto head home to her husband and three children when she spotted the envelope.

She dropped into her chair,grabbed it, ripped it open along one end and dumped the contents onto her desk.She started with the medical report: Patient has lymphaticovenous malformationof the left side of face and neck. Condition was diagnosed prenatally. Involvementof the airway necessitated a tracheotomy. Difficulty swallowing necessitateda gastronomy tube. Malformation has grown to the point of orbitaldystopia.

She remembered — the Portlandboy.

She searched through thepaperwork and found several photos. She picked one up and held it between herfingers. The photograph haunted Marler.

The boy lay in a hospitalbed, staring at the camera with pleading eyes. He looked like one of the childrenfeatured in ads aimed at raising money to help poor kids overseas.

Marler scanned the reports.The kid was on a morphine drip, diagnosed as clinically depressed.

Marler was 38 and had beena doctor for 11 years. Outside of a textbook, she had never come across sucha profound facial deformity. He was the saddest-looking child she’d ever seen.

And she had seen many. Ascore of photographs hang on her office wall, the faces of children who haveset the course of Jennifer Marler’s life. Some of the images show children shesuccessfully operated on, relieving them of the deformities that robbed themof their futures. Others tell sadder stories, reminding her of children whodied from their abnormalities or who took the risk of surgery and didn’t survive.

Marler picked up the telephoneand spoke with the nurse who scheduled weekly team conferences for the VascularAnomalies Team. During the meeting, doctors discuss cases and decide whetherthey want to tackle them. The nurse said the next chance to present a case wouldbe Sept. 22, 1999, just three weeks away.

She decided she’d presentSam Lightner’s case and argue that he be brought to Boston. First, though, shehad to get the facts down cold. She picked up the telephone again, called herhusband, apologized and told him to have dinner without her. She talked to herthree young daughters and told them Mommy had something important to do.

The team met Wednesday eveningsin the surgical library. Members, fellows and residents gathered around a 15-foot-longoak table, nibbling cookies and sipping soft drinks.

Everyone found a seat, thelights dimmed and the patients’ images appeared, one by one, on an overheadscreen. The team members flipped through paperwork, scanning each patient’smedical history. They spoke in short, clipped sentences, rife with medical jargon,challenging one another, looking for potential problems that might rule outsurgery.

Marler remembers studyingthe paper in front of her. Nineteen children were up for consideration. Fewerthan half would be chosen.

The team moved quickly:The agenda included an 8-month-old girl from Argentina. A 3-year-old girl fromItaly. A 9-year-old boy from Minnesota.

Sam Lightner was next. Hispicture — the one Dr. Tim Campbell had taken — flashed on the screen.

Who is he? someone asked.

Marler recalls choosingher words carefully. She wanted to make sure the team knew something of theboy’s life. He was in pain, she says she told them. Without hope. The disfigurementsevere.

Although the center takessome of the most difficult cases in the world, Marler knew Sam Lightner presentedmajor problems.

Behind her, she heard papersrustle as the team read his medical history. They quickly zeroed in on thoserisks. They hesitated. Before making any decision, the team members wanted moreinformation.

Next case.

Marler scheduled Sam forthe Nov. 3, 1999, meeting. Again the answer was no.

At the Nov. 10 meeting,she tried again, focusing not on the entire team, but on Dr. John Mulliken,the surgeon who directs the Vascular Anomalies Team and a researcher who’s tryingto figure out the causes of defects such as Sam’s. Mulliken lectures at hospitalsaround the world and co-founded the International Society for the Study of VascularAnomalies. He’s written 185 scientific articles, 40 book chapters and two completebooks.

The way Marler saw it, ateam of doctors would have to operate on Sam. And Marler wanted to be on theteam.

At this meeting, she spentan unusual 30 minutes arguing her case, knowing this was her last chance. Shestudied Mulliken, an impatient man, as he reviewed the files. She knew whathe was thinking — the horrendous bleeding, and the tangle of nerves in the mass.If Mulliken damaged one, the boy might lose the ability to speak, to close hisleft eye or to smile.

She appealed to Mulliken’spride and compassion. No other surgeons, Marler remembers telling him, believethey can fix this.

She watched Mulliken, Sam’slast hope.

The projector’s motor hummed.Sam Lightner’s face peered out into the room. Mulliken looked up at that face.

Bring him to Boston, hesaid.

On April 7, 2000, Sam Lightnerand his parents walked three blocks from their Boston hotel to Children’s Hospital.The Lightners silently rode an elevator to the third floor, where a smilingreceptionist waved them over and took the Lightner file. Sam found a seat andflipped through a stack of magazines. He caught the eye of a woman sitting acrossfrom him. She turned away. Sam saw her whisper something to a woman sittingnext to her before both turned back to stare.

“Samuel Lightner,” the receptionistcalled.

A woman led them down ahallway to an examination room. Sam climbed onto the table. A few minutes later,the Lightners heard a soft knock.

She stood 5 feet 7 inchestall and wore a white doctor’s smock over a long black skirt with matching blackhose and shoes. Her brown hair was cut in a pageboy. “I’m Dr. Marler,” she said.

She sat down on a doctor’sstool, tugged on her glasses and fiddled with a string of pearls that lay acrossher white and blue-striped blouse. “I’m so glad to meet you,” she told Sam.A flush spread up his neck.

Debbie Lightner dug throughher purse and handed Marler a picture taken shortly after Sam’s premature birth.Marler stared at the image of the tiny infant. “Boy,” she said, “you were alittle peanut.”

The Lightners explainedSam’s medical history — the emergency surgery right after his birth, the earsurgery that led to six weeks of persistent bleeding and the reluctance of othersurgeons to even attempt cutting away the main mass of tissue. Marler took notes,interrupting occasionally to ask a question or to look at additional photos.

“I think you’re in the rightplace,” she continued. “Dr. Mulliken is both a craniofacial surgeon and a specialistin vascular anomalies. That makes him the right man for the job.” She swiveledto face the examination table.

“So let’s take a look, Sam.”She patted his knee. He smiled.

“What grade are you in now?”

“Eighth,” he said, in hisraspy voice.

Marler ran her fingers acrossthe mass, sizing it up. She sighed.

Sam’s father cleared histhroat. “He’s going into the ninth grade,” David Lightner said. “He wants thesize of his head made smaller. He’s a little bit more concerned about his appearancenow.”

Marler patted Sam on theshoulder. “I can understand that, Sam,” she said. “I’ll bring in Dr. Mullikenand our cast of thousands. On this one, we’re going to need everyone’s opinion.”

She walked out, closingthe door after her.

“You’ve been waiting forthis a long time, haven’t you, Sam?” Debbie Lightner asked her son.

“Nervous?” his father asked.

“I’m just hoping.”

The door opened, and Marlerwalked back in, followed by six doctors who formed a semicircle around Sam.A man wearing a bow tie with blue and red polka dots stepped forward.

“Hi, Sam. I’m Dr. Mulliken.Nice to see you.”

He perched on the examinationtable next to Sam. He took the boy’s head in his hands as if holding a basketballand moved it gently, running his fingers from one side of the face to the other.He frowned. All the blue veins showing through Sam’s waxen skin worried him.

“Oh, boy,” he said. “There’sa lot of venous component there. This is an incredible overgrowth.”

He released Sam’s head andclimbed off the examination table. He stepped back two feet and crossed hisarms, looking like a sculptor studying a block of granite. He moved to the left.The semicircle moved with him. Back to the right. The other doctors shuffledinto place.

Mulliken ran his hands overhis face. He groaned.

Marler jumped in. “I thinkhe has very good facial nerve function.”

“Smile, Sam,” Mulliken commanded.

He sighed again. “OK,” Mullikensaid. “Let’s write down some things.”

That was what Marler hadwaited eight months to hear. She smiled, sat on a stool and opened her notebook,ready to send off instructions on what Mulliken needed to know about the insideof Sam Lightner’s head.

“I want Reza to look downthe trach and see what’s going on there,” Mulliken said, asking one of his colleaguesto peer down Sam’s airway. “Send him to AP for a Panorex. Find a CP and getpictures downstairs. We’re going to have to decide what’s going on in termsof flow, and if there’s anything we can do to make it easier.” He looked atMarler.

“Got all that?”

“Right,” Marler said.

Mulliken boosted himselfback onto the exam table. He scooted up next to Sam as if he were the boy’sgrandfather. He put his hand on Sam’s knee.

“What bothers you the most?”he asked. “If you had one thing you wanted, what would that be?”

Sam shrugged. He staredat his hands, folded in his lap.

“Should I give you somechoices?” Mulliken asked. “Some multiple choices?”

Sam responded with a barelyperceptible nod.

“Our goal will be to makeyou look as symmetrical as possible, to balance out your face,” he said. “APicasso is a great painting, but no one wants to walk around with one for aface. We have many things to talk about: Making your ear smaller, the tonguemovement, the eye. The neck’s pretty good.”

He put his arm around Sam’sshoulder. “What do you want, Sam?” he asked quietly, as if the room were emptyexcept for the two of them.

Sam bowed his head and staredat his hands.

“Well, you’re really downto the choice of two things,” Mulliken said. “We can focus on the face or theear, but we can’t do both at the same time. If we get the face smaller, theear will look bigger. Frankly, I just don’t know. The face is tough, very tough.Lord, I just can’t imagine. .¤.¤.”

Sam raised his head. Helooked deeply into Mulliken’s face with his one good eye. “I want to fit in,”he said in his raspy whisper. “I want to look better.”

Mulliken nodded, his featuressoftening. He pulled the boy a little closer. “I can understand, Sam.”

David Lightner, standingagainst the back wall, pushed his way through the semicircle until he facedMulliken, who dropped his arm from Sam’s shoulders and faced the father. “Hisgoal?” Lightner said. “Well, Sam’s 14 years old. Like you put it, he’d likea more symmetrical face. I’m ambivalent. I understand the risk of the wholething. But this is something Sam wants. We’re supporting him.”

“OK, Dad,” Mulliken said.Then he swiveled on the table and faced the doctors.

“I think it will be reasonableto focus on this huge area on the side of his face,” Mulliken said. “It’s no-man’sland, and it will be hard to work in that area. The problem’s going to be findingthe facial nerve branches and separating them from the malformation. They lookexactly alike.”

Mulliken slid off the tableand paced. He shook his head, as if he were having an argument with himself.“The bleeding. Boy! When you are dealing with a pure lymphatic tissue malformation,bleeding is just an annoyance. But if you have these venous components, whichhe has, it’s more than a problem.”

He smiled. “But Sam, I’mgoing to try.”

The goal, Mulliken toldthe room, was to get the mass on the side of Sam’s face down to the bone. IfMulliken could eliminate the mass, Sam could return to the hospital for moresurgery to reshape the bone. That surgery would be much easier.

“Another operation?” DebbieLightner asked. “The insurance company’s going to really love us.”

Mulliken broke through thesemicircle and stopped in front of her. “Listen,” he said, “you show that insurancecompany photographs of this boy and there won’t be a dry eye in the house.”

The Lightners looked ateach other.

Mulliken moved aside sothey could look at Sam.

“Sam?” his father asked.

Sam nodded, more firmlythis time.

Mulliken moved back to hispatient. “This is going to be tough. We’re in for a rough time in the operatingroom. It’s going to be a microscopic dissection, and we’re going to need a team.”

He looked around the room.“Dr. Marler, me and one or two others.”

He stepped back once moreto look at Sam. “His face is going to be swollen for a long time,” Mullikensaid. “By the time he goes to school, though, he should look considerably better.Push me to the wall, and I’d like to think we could make it 50 percent better.”

“Sam,” he asked, “is thissomething you really want?” Sam nodded. Mulliken patted the boy on the shoulder.

“Let’s schedule for July,”he told Marler.

Sam’s father cleared histhroat. “From seeing him in person, is this something you want to do?”

Mulliken frowned. “Well...”

“I’m being blunt,” Davidsaid. “We have to know.”

Mulliken sat on the examtable again. “I don’t know if ‘want’ is quite the right word,” he said quietly.“I think that we can do it.”

He ran his hands over hisface. “I know we can do it,” he said. “I wish I could make him perfect. Allplastic surgeons search for perfection, just like Michelangelo. I can’t givehim perfection.”

He hoped he could removea large amount of tissue from the side of Sam’s face. But he also knew the underlyingbone would remain seriously misshapen. When the world looked at Sam after thefirst surgery, it would still see an extraordinary deformity. But removing thetissue was the necessary first step to dealing with the bone.

“Dad, I’m bothered thathe has to live with this mass,” Mulliken said. “Everyone should have the rightto look human.”

The giddiness the Lightnersfelt vanished almost as soon as the jet roared down the runway at Logan InternationalAirport and headed west, back to Portland, back to reality. Once home, Davidand Debbie went back to work, and Sam returned to eighth grade.

Sam’s mother took Sam toregister at Grant High School. An administrator walked in, noticed the Lightnerssitting outside the counselors’ office and stopped. He introduced himself andshook Sam’s hand. He turned away from the boy, as if Sam were deaf. He toldDebbie that Grant had a great special-education class for mentally retardedstudents.

Her son, he said, wouldlove it.

The telephone rang in theLightner home. Dr. Jennifer Marler told Debbie Lightner that surgery was scheduledfor July 6. Having a date, something to put on the calendar, made it real. Andfrightening.

After dinner, the Lightnerscalled their children together. Sam sat at one end of the dining-room table,his father at the other. In between were Debbie, Emily, 12, and Nathan, 9. Thefamily cat, Alice, jumped onto the table.

David Lightner played witha pencil, turning it end over end. “I wanted to discuss how this is going toaffect us,” he said. “We’re up in the air about whether we should do it. Mommytalked with Dr. Marler for quite a while. There are dangers, but Dr. Marlersaid if Sam was her child, Dr. Mulliken would be the man.”

David fiddled with a magazine.“There are some things that could happen,” he said. “We have to be honest aboutthat.”

“Like what?” Nathan asked.

“If some of the nerves aredamaged, Sam’s face could droop,” his mother said. “He’d be paralyzed on thatside.”

“You mean he wouldn’t feelit?” Emily asked.

“Right.”

No one looked at Sam.

“He might bleed a lot duringsurgery,” his mother said. “They think they can control it, but you never know.I think Dad just wanted to have it all out on the table for everyone to talkabout one last time.”

David Lightner shifted inhis chair.

“Now that we’re 3,000 milesaway,” he said, “it puts a different spin on it. It’s more complicated sittinghere.”

Debbie touched Sam’s arm.“Sam, do you still want to do this?”

Sam nodded.

“I want to hear it.”

“Yes,” Sam said, firmly.

“It’s your decision,” hisfather said. “That’s the deal. If I felt something was wrong, I’d intervene.I don’t sense that. But I have to be honest, it scares me a little bit.”

“Me, too,” Nathan said.

“Me, too,” Emily said.

“I worry about the potentialdamage to him,” said David. “As it stands, he’s Sam. He is who he is.”

“He’ll look different,”Emily said. “Sam is Sam.”

“He is who he is,” saidDavid. “We don’t think anything’s wrong with him.”

David leaned forward, armson the table, and stared across at his son. “Any doubts, Sam?” he asked. “Ifyou say ‘no,’ we call and cancel right now, date or no date.”

“I’m a little nervous,”Sam said. “But I like the doctors.”

“Well, it scares me,” hisfather said. “It’s the unknown. Here we have the situation that Sam deals with.It’s the known. It’s not ideal for him because of his face. His face freakspeople out. But it’s a known property. And it’s a little bit scary to risk everythingbecause the world doesn’t accept his face.”

“Dad, I’m sure,” Sam said.“Look what happened at Grant.”

His father bowed his head.

“That’s what people thinkabout him,” Debbie said. “They think he’s mentally defective.”

Sam leaned forward and musteredall his strength.

“I want to do this,” hesaid.

David placed both handson the table.

“We are fearfully and wonderfullymade,” he told his family. “And very fragile.”

He sighed.

“All right,” he said. “It’sa go.”

© 2000 The Oregonian. Reprintedwith permission.

PartThree: The risks we take can tell us who we are

Tuesday, October 3, 2000

A nurse appears in the doorway.It’s time to go, she says. Sam Lightner takes a deep breath and nods feebly.He lifts himself, his hands trembling slightly on the arms of the chair, andwalks across the small pre-op waiting room to give his parents a hug.

“We love you, sweetie,”says his mother. She pulls him close and kisses him softly on his left cheek,right on the mass that the waiting team of doctors will target. Sam looks athis mother through his right eye — the only truly normal feature on his face.He blinks it once. A wink.

“Have a nice sleep,” sayshis father as he gives his son a hearty pat on his shoulder.

The nurse touches the 14-year-oldon the shoulder and leads him down the hallway. His gown hangs loosely on his83 pounds, exposing his spindly legs. In another room, nurses help him ontoan operating table. He lies down, and a nurse inserts an IV line into an arm.Then she injects drugs to make him drowsy. When his eyes flutter, he’s wheeledinto Operating Room 16.

It is Thursday, July 6,2000, just three months since Sam and his parents visited Boston to find outif this elite surgical team, the only one in the world with any chance of correctinghis deformity, would take his case.

The room is about the sizeof a two-car garage with a 15-foot ceiling. It’s chilled to 64 degrees, whichcuts down on the growth of germs and keeps the doctors comfortable as they work.Two massive operating lights, each with four bulbs, hang over the table. Everythingbut the white walls — the drapes that cover the patient and the operating table,the surgical scrubs and the shoe covers — is light blue.

“You’re just falling asleepnow, Sam,” says a nurse as she strokes his hair. “Just falling asleep, Sam.”

His eyes close.

An anesthesiologist takesher place behind the bank of machines that will control the boy’s body duringthe operation. She switches a knob, and the sound of a pump fills the room.It is a steady beat — one swoosh every two seconds — and fills Sam’s lungs withair, breathing for the unconscious boy.

The circulating nurse, responsiblefor everything that comes in and out of the room, sorts through a cluttereddesk to find Sam’s medical history. In these final quiet moments, she sits ona corner stool and flips through a folder the size of a small telephone book,reading about this small boy’s long journey. The nurse puts the file down andwalks to the operating table. An intravenous line pumps Sam’s body full of saline,a way of making up blood volume in the face of the bleeding that is sure tofollow.

The swinging door to thescrub room opens with a bang, and Dr. Jennifer Marler enters Operating Room16. Her arms drip with water. The circulating nurse hands her a sterilized towel.

Marler, a 38-year-old motherof three, lobbied to bring Sam here to Boston, to Children’s Hospital, the nation’slargest pediatric medical center. In late 1999, Marler presented and pressedSam’s case before the hospital’s Vascular Anomalies Team. The team members balked— the surgery was tremendously risky. But eventually Marler won them over.

The goal was to cut awaya mass on the left side of the boy’s face. If all goes well, that will set thestage for a later operation on the misshapen bones in his face. But first, surgeonsmust cut their way down to the facial bone.

A nurse helps Marler intoher surgical gown and a set of gloves. She moves to the operating table. Sheruns her hands across Sam’s face, gently, almost caressing the boy, not as adoctor but as a mother.

“We’ll take good care ofyou, Sam.”

She leans over his bodyand begins suturing his eyelids. She does not want his eyes to open during surgery— the swirl of scalpels, needles and surgical gowns around his face could scratcha cornea.

Word about Sam and the impendingoperation has filtered through the hospital, Harvard Medical School’s primarypediatric teaching hospital. The staff is curious about something that pushesthe boundaries of medical practice.

A nurse from Operating Room17 pops in. “Wow,” she says. “How old is he?”

“Fourteen,” says Marler.

“Where’s he from?”

“Oregon.”

“Does he go to school?”

“He does,” says Marler.“He’s very personable.”

As Marler begins preparingSam’s face, the scrub doors swing open, and Dr. John Mulliken, the surgeon whowill lead the team, strides silently into the room. He stops to study Sam’sthree-dimensional CAT scans, which hang from a lighted viewing board. He hasnever encountered so complex a case.

He holds out his hands.A nurse helps him into his gown and gloves. He walks to the operating tableand looks at his patient. “Good preparation,” he tells Marler. “Good preparation.”

Surgery is Mulliken’s life.He works weekends. He hasn’t had a vacation in years. He’s never married andhas no children. He dotes on his dog, Girlie, and his cat, Felicia. A cabinetin the operating room carries 19 photographs of the two pets.

During surgery Mullikencan be gruff, and some of the rotating nurses have complained to the administrationthat he barked at them when they didn’t move quickly enough or when they handedhim instruments he didn’t consider clean. But for this operation, Mulliken hasassembled a team of people who have worked with him for years. They all havethick skins.

He reaches down and grabsSam’s head with both hands. “His head’s just so big,” he mutters. “It just rollsaround.”

He turns to a nurse. “Ican’t have it rolling,” he says. “Stop it.”

The nurse scurries throughthe room, searching in cabinets until she finds something that looks like adoughnut the size of a dinner plate. Sam’s head fits in the hole. Mulliken triesmoving the head. It doesn’t budge. “Good,” he says.

The swinging doors openagain. Dr. Gary Rogers joins Mulliken at the head of the operating table. Theblue surgical scrubs cover their bodies. The caps fit snugly over their heads.Masks hide their mouths and noses. Each wears special black glasses outfittedwith surgical microscopes that will allow them to peer deep into the boy lyingin front of them.

Mulliken ignores his teammates.He walks around Sam’s head, studying it from all angles. Knowing this wouldbe a difficult operation, he had scheduled a warm-up earlier in the morning:repairing a cleft palate in an infant. His hands are limber and steady.

The surgical nurse makesthe final adjustments to tool-lined trays beside her. The circulating room nurseawaits her first order. Mulliken, Rogers and Marler adjust the microscopes overtheir eyes. Mulliken points to a spot near Sam’s left ear. That, he says, iswhere he wants to make the first cut.

“Everyone agree?”

Marler and Rogers bend overSam. “Yes,” they say in unison.

Mulliken takes a deep breath.“OK,” he says.

He holds out his right handand asks for a scalpel. He grasps it firmly. “This is going to be a bear,” hesays. “Let’s do it.”

The scalpel parts the skin,and the flesh gives way to the blade.

Then the blood begins toflow.

The first drop of bloodlands on the floor, and Mulliken calls for suctioning. Marler uses a tool attachedto a clear plastic tube. In seconds, it resembles a piece of red licorice thatsnakes across Sam’s body, down the floor and to a holding tank where the boy’sblood collects.

Rogers holds back the skin,allowing Mulliken to proceed. After 15 minutes, the lead surgeon has openedup a 3-inch incision. The bleeding hasn’t slowed.

He calls for a syringe.Marler injects more drugs designed to speed clotting into Sam’s neck, hopingthey will slow the bleeding.

The team waits. The bloodflows freely.

The team confers. Mullikencould close up now, suture the incision and end the operation. When the Lightnerfamily traveled to Boston three months earlier to meet Mulliken and Marler,Mulliken made it clear that this surgery was risky. The only other time Mullikentackled a case this serious, he made an incision, encountered massive bleedingand closed.

If he continues, he andhis team will have to work furiously, trying to stay one step ahead of massivebleeding while they peel back the skin. And even if they expose the mass, theymight never find the nerves that branch out into the tissue. If they cut a nerve,they could paralyze the left side of Sam’s face.

The tissue mass is a jumbleof skin, tissue, nerves, lymphatic vessels, veins and arteries. A Nerf ballfilled with blood and fluid. Mulliken has no road map. If he plunges ahead,it will be like replumbing a house with the water turned on.

Operating Room 16 awaitshis decision.

He leans over Sam’s body.“Let’s do it,” he finally says.

The circulating nurse jumpsfrom her chair and hustles to a phone. She punches in the four-digit numberto the hospital’s blood bank. Six units of blood are now in a cooler in OperatingRoom 16. The nurse tells the bank to set aside an additional six. Even if allgoes well, Sam will bleed so much during the operation that she will have toreplace his entire blood supply.

She glances to a plasticbag holding a unit of blood that drips from an IV line into Sam’s right arm.The bag is half-empty.

Mulliken lengthens the incision.The bag drains.

Mulliken, Marler and Rogersoperate quickly, the suctioning line thick with the boy’s blood. Each time thescalpel moves, it slices a blood vessel. They go through 50 surgical towelsand countless sponges, soaking up blood so they can see where they are.

Mulliken calls for the Bovie,a machine that electrically cauterizes blood vessels. In a normal body, themachine stops bleeding, and the surgery is almost bloodless. Marler leans overSam’s body and grasps the Bovie, a device that looks like a dental drill, inher right hand.

There is the sound of sizzling,as if grease has been dropped onto a grill. A plume of smoke rises from Sam’sface. But the bleeding continues.

A nurse walks behind thesurgical team and hangs a third bag of blood on the IV line. “Jesus Christ,”Mulliken mutters.

The team begins to pullback the skin. They can see the edge of the mass. “Easy,” Mulliken tells Marler.“Easy.”

The side of the boy’s faceoozes blood. Drops splatter the floor. A red stain spreads through the surgicaldrape as if someone had spilled a glass of wine on a white tablecloth. Nursescall for another 10 towels. Within minutes, they are soaked through, and thenurses dump them into a bucket.

The insides of Marler’sshoes are soaked with Sam’s blood. She asks for a new pair of wool socks.

Mulliken sees only one option:They’re going to have to stitch each blood vessel closed. He calls for needles.

While Marler continues cutting,Rogers uses the Bovie, and Mulliken starts stitching. The surgical nurse goesthrough packet after packet of stitches and tells the circulating room nurseshe needs more.

Mulliken’s fingers tire,and Marler takes over. Then Rogers. The bleeding slows to a trickle. The teamhas tied more than 200 stitches.

Slowly, they pull Sam’sskin back and cover it with a towel to keep it moist.

The mass is exposed.

Mulliken looks to a boardin the far corner of Operating Room 16. Sam has gone through three units ofblood. And the team hasn’t even reached the heart of the operation. He stepsaway from the table. He tells Marler and Rogers to clean up the area surroundingthe mass. He’s going to take a break.

The phone rings, and thecirculating nurse answers it. “We’re No. 1 again,” she calls out to the room.

For the past 10 years, U.S.News and World Report magazine has ranked Children’s Hospital best in the country.It’s won the award again.

“Your friend says you hada bet with him,” she tells Mulliken. “He says you owe him a dinner. He wantslobster.”

Mulliken strolls towardthe door. “Yeah, yeah, yeah,” he says, disappearing through the swinging doors.

Surgical coverings hideSam’s body and most of his face, leaving only the tissue mass exposed underthe glare of the surgical lights. It looks like a piece of raw prime rib.

Even to someone as experiencedas Mulliken, the mass is a mystery. X-rays don’t show soft tissue. So there’sno way of knowing how invasive the mass is or what it’s wrapped around. A singlenerve leaves the brain and divides into five branches that spread out to controlthe side of the face. But the mass could rest on top of nerves, or it couldspread under them. Or the nerves could snake right through it.

The boy has few enough pathwaysto connect him with the rest of the world. If Mulliken guesses wrong and cutsa nerve, Sam loses an important part of what he has left — the ability to blinkhis eye, to crinkle his forehead or to smile.

News of what’s going onin Operating Room 16 has spread throughout the third floor. Residents and otherdoctors wander in to look at the CAT scans hanging on the wall. They stand backand stare at the mass, bloody and glistening in the high-powered lights.

“Unbelievable,” says a visitingdoctor.

He turns to the circulatingnurse. “How old is he?”

“Fourteen,” she says. “Andhe’s really nice.”

The doctor looks at scans,which make Sam look like a cyborg in a science-fiction movie.

“Isn’t that the saddestthing you’ve ever seen?” he asks. “It’s heartbreaking. This kid must have atough life. That’s no way to live.”

On the way out of the room,he passes Mulliken, who re-enters Operating Room 16 with a shout. “Children’sHospital is tops,” he says. “We’re No. 1.” Even through his surgical mask it’sclear he is frowning.

“I was hoping we would besecond or third,” he announces. “That way we won’t be so damn complacent aroundhere.”

He checks with Marler. Theblood has slowed to a trickle.

His job now will be to huntfor the nerve branches and to cut away the mass of tissue. The team will usean electric probe. If they touch a nerve, a portion of Sam’s face will twitch.

Out of habit the circulatingnurse pulls down a thick anatomy book. She turns to the page that details thefacial nerves and leaves it open on a table so the team can refer to it. Butit will do them no good. In this section of Sam’s body, nothing is where itshould be.

The team works under microscopes.Looking for the nerve will be like hunting for a white rope encased in whiteconcrete.

Test. Cut. Test. Cut.

They begin removing bitsof the mass. The bleeding begins again.

An hour passes, and Mullikengoes to the scrub room. He takes off his gown and gloves, and returns to flopin a chair away from the operating table. The pressure is intense, physicallyand mentally, and the team plans on working shifts — when one surgeon tiresanother will take the scalpel. Mulliken leans back and rests his head on a cabinet.He closes his eyes. After 15 minutes, he stirs.

“How’s it going,” he callsto Marler.

“The nerve must be surroundedby scars from his previous surgery,” she says.

“Don’t relax,” he tellsher. He knows the biggest danger is in getting sloppy and cutting somethingthat appears to be tissue but may in fact be the edge of a hidden nerve.

“Jennifer, are you looking?”

“There’s nothing,” she tellshim.

He leaves the room to scruband to check on his cleft-palate patient. He returns 30 minutes later. Aboutfour and a half hours have passed since the surgery began.

“How you guys doing?” heyells when he enters Operating Room 16. The silence is ominous. After gettingin his gown and gloves, he moves to Marler’s side. He looks over her shoulder.

“Is this the same case?”he jokes.

“Hey,” she admonishes himwith a chuckle.

“You found it yet?”

“We think we found the region.”

“I know the region,” hesays. “I want the nerve. Where is it?”

He takes over, and Marlerstrips off her gown. She is going to take a shower, get something to eat andcall her family and tell them she won’t be home until late that night.

Test. Cut. Test. Cut.

A nurse walks behind thesurgical team and hooks up a fourth unit of blood to Sam’s IV line. Marler returns20 minutes after leaving and finds Mulliken frustrated and worried. They haven’tfound any branches of the main nerve, and the operation is entering its fifthhour.

And the kid is bleeding.He thinks of Dr. Alan Seyfer, the Portland surgeon who nearly attempted a similaroperation on Sam when the boy was 12, and then decided the risks were simplytoo great.

“Seyfer was right,” Mullikengrumbles. “Seyfer was right.”

He mops up more blood andturns to see that the fourth unit is nearly gone. “This was a mistake to takethis case,” he says. “I don’t think we can help this boy.”

Mulliken tells his teamthere are two choices: Increase the risk of destroying part of the nerve bycutting even faster. Or close up.

“I’ve been here before,”he says. “I think we should close up.”

Marler turns to him. “Let’skeep going.”

Mulliken moves to the side.“Jennifer,” he snaps, “you take over. You wanted to bring him here; you lookfor the nerve.”

Marler takes the probe,and 90 more minutes pass. The team has gone through more than 200 sponges andtowels soaking up Sam’s blood. The holding tank where the suction line emptiessloshes red.

“I think I got it,” Marlershouts.

“This is in a portion ofscar tissue like you have never seen,” she tells Mulliken, who pats her on theback.

She applies the electricprobe again, and a muscle twitches. “You got it?” Mulliken asks.

“I got it,” says Marler.“It’s all encapsulated. I can’t distinguish the nerve from the scar tissue.And it’s deeper than it should be. I’m afraid to dissect any farther.”

Mulliken trades places withher. He peers into the side of Sam’s face and holds out his right hand. A nursehands him a scalpel. He leans over, inches from the mass. He touches it withthe tip of his scalpel.

“Well, I can’t budge itfrom the scar tissue,” he says. “It is literally entangled in it.”

Marler uses the probe. Sam’sforehead moves.

“Every time I dissect, I’mworried,” Marler says. She and Mulliken turn away from Sam and look intentlyat each other.

“It’s bad,” he says. Hepeers back into the mass, which is oozing blood. He stands up.

“We’ve come this far,” hesays. “We’ve got to get it out.”

Rogers assists with suctioningand controlling the bleeding so Mulliken can see where the nerve might lie.

“Let’s stimulate aroundwhat we think is the edge, Mulliken says.

Test. Nothing. Test. Nothing.Test. Reaction.

Mulliken cuts. “It shouldbe under here,” he says. “Jesus.”

He sighs. “I would go righthere,” he says.

Mulliken, Marler and Rogers,instruments in each hand, all focus on a spot in the mass the size of a quarter.“I think I found a branch above,” Mulliken says.

The fourth bag of bloodis nearly gone.

Mulliken turns to Marlerand asks for the probe. He tries to work his way back up the tiny nerve he’slocated, searching for the main branch.

He applies the probe again,but the room is silent.

“Come on, people,” he snaps.“Talk to me.”

“Yes,” says Marler. “Hisforehead moved.”

Mulliken tries again. Theyare more than six hours into the operation.

“Bingo,” says Mulliken.

Marler turns to him. “Justimagine what it’s going to be like getting there,” she says. “What are we goingto do?” Mulliken says nothing.

“Could we get the malformationoff and then go back and do a nerve graft?” she asks.

“No,” he says. “We can’teven find all the nerves. “Jesus Christ,” he says. “We’ve been here nearly sevenhours, and we can’t even get to the nerves.”

Rogers strips off his gownand leaves the room for a break. Mulliken and Marler bend over Sam. Suddenly,blood spurts onto Marler’s blue gown. The scalpel has nicked a branch of thecarotid artery.

“Bleeder,” Mulliken yells,calling for clamps and sutures to stanch the spurting blood. The surgical nursedoesn’t move fast enough for him. “Come on,” he shouts. “Come on.”

He works frantically. “Wegot a real bleeder here,” Mulliken yells. “Oh, Jesus.”

The fourth bag of bloodis gone. A nurse scurries to hang a fifth, which drains as though it has a holein it. A sixth bag begins to empty just as fast.

The blood loss could sendSam Lightner into cardiac arrest. He is close to death.

Mulliken leans into Sam’sbody, violently shifting the head, stitching and then reaching out to grab anotherinstrument and stitching again. The bleeding slows.

Rogers returns. “What’sup?” he asks.

“We get into the carotidbranch of the vessel, and you walk off?” Mulliken says.

Rogers, mystified, looksat Marler.

“We’re fine,” she says.“We’re fine.”

The hallway outside OperatingRoom 16 empties. It’s 10:30 p.m., and janitors are already cleaning the surroundingrooms, readying them for the next day’s cases. In all of Children’s Hospital,only one surgery continues — the one in Operating Room 16.

The members of the teamhave to get reoriented. They suction off the blood and begin testing, lookingfor nerves again. Mulliken probes. “Let’s get going here,” he says. “We’re losingtime.”

He asks the surgical nursefor a tool covered with green dye and maps the nerve branches right on the exposedtissue. The team can cut anything in between the green lines. When they reachthe edge, they must test, getting as close to the nerve as possible. They thinkthey’ve found all the nerves, but they won’t be sure until Sam regains consciousnessand actually tries to move.

They begin cutting.

Small pieces, the size ofa toenail clipping. Then much larger, some of them size of a marble. “Say,”Mulliken says. “You know that we’re the No. 1 hospital in the country?” He chuckles.

Nurses and doctors laugh.

“You know what we are doingnow?” he asks. “We’re rolling, rolling, rolling.” He sings lines from the themeto the old television show “Rawhide.” And hacks away at the mass.

“You ever see anything likethis?” one nurse asks another.

Marler dissects the areaunder Sam’s chin. “That should go,” she says as she pulls out a large chunk.“Let’s go the extra mile.”

Mulliken pulls the flapof skin back over Sam’s face. “He looks a lot better,” he says.

He folds the flap back down.“Folks,” he says, “We’re down to the bone.”

Sam’s blood has completelylost the ability to clot, and the nurse rushes to replenish it with a seventhbag. “He’s bleeding from every little hole,” Mulliken says. “Jesus Christ, thingsare starting to blow up. We’re getting out of here.”

He stands to speak to theroom. “Close,” he says.

Rogers and Marler stitchSam’s skin flap back to the side of his face. “That chin of his is going tolook awesome,” Marler says. “Not a bad way to start high school,” says Mulliken.He steps away from the table, taking off his gloves, gown and mask. He sitsat a table and fills out forms. He glances at a wall clock to note the time.

It is midnight. The surgeryhas lasted nearly 13 hours.

He files the paperwork andwalks out the door and down the empty hallways. Through another set of doorsand then into the bowels of the hospital. In the waiting room, he finds Sam’sparents asleep on separate sofas.

He clears his throat. Theystir.

“Everything is fine,” hetells the Lightners. “All is well.”

“How difficult was it?”David asks.

Mulliken sits on a chairand runs his hands across his face.

“This was very difficult,”Mulliken says. “The most difficult surgery I’ve ever performed. At times wewere very discouraged, and it wasn’t easy. But no one ever wanted to give up.”

He yawns. “All is well,”he says, rubbing the back of his neck. “The next step will be fixing the mandiblebone, probably next summer. That won’t be a problem.”

The Lightners turn to eachother. They hold hands.

“You know, doctor, whenI talk with you, I realize how Sam’s face really looked,” David says, his voicebreaking. “To me, to us, he’s always been just Sam. I guess we got used to it.To us, he’s just a kid with a big old head.”

Mulliken nods.

“The family doesn’t seeit,” he says. “It’s the rest of the world, all of us, the strangers who can’tsee beyond the face. That’s the sad part.”

The Lightners stand. Theymove toward Mulliken but hesitate, not sure of what to do or what to say.

“Thank you,” says DebbieLightner. She runs her hand across her eyes.

Mulliken smiles. “You’rewelcome,” he says.

He turns and disappearsthrough the door.

© 2000 The Oregonian. Reprintedwith permission.

PartFour: “I am Sam; Sam I am.”

Wednesday, October 4, 2000

The doors to Operating Room16 opened with a bang, and two intensive-care nurses pushed Sam Lightner’s gurneyinto the hallway, maneuvered it to their left and toward an elevator.

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

A thick bandage — brilliantwhite except for a streak of red left by the blood still oozing through sutureson his neck — encased Sam’s head. An IV line pumped drugs and painkillers intohis body. He was heavily sedated, not expected to stir for at least the next36 hours.

Dr. Jennifer Marler, oneof Sam’s three surgeons, pulled off her surgical gown and gloves. In her bluesurgical 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 runningfrom his body into a bank of monitors. They adjusted the screens, and Marlermotioned to the nurses. They followed her to the nurse’s station.

She opened Sam’s file andpulled out a color photograph taken in April, when Sam had first been evaluatedat Boston’s Children’s Hospital. Sam, Marler explained, was a 14-year-old fromPortland, Ore. He’d been born with a venous malformation — a bulging mass ofblood 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 nursesmurmured.

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

Marler wondered what Samwould look like when the swelling went down in a month. The goal had been toremove the tissue mass, setting the stage for a future surgery on the underlyingbone. This first stage of his facial reconstruction might make Sam look 50 percentbetter, the surgeons figured.

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

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

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

Debbie Lighter asked Samhow he felt.

Sam slowly raised a fingerand punched button No. 1.

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

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

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

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

She remembers the Lightersstanding by the bed, looking at their son. A line from a ventilator — the machinewas still breathing for Sam — was hooked into his tracheotomy, the hole in histhroat that bypassed the tissue mass. The hole would remain until Sam completedall his surgeries.

Marler made small talk withthe Lightners, wondering how she could check on Sam’s nerves. She felt goodabout the branches leading to his eye and forehead. But what about the branchto 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 beenawake 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 overSam’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 roomwas the steady whoosh from the ventilator.

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

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

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

Then, slowly, the outeredge of his mouth began to curl.

And Sam Lightner smiled.

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

The surgeons who had operatedon 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 buildupof internal fluids would make his face look more distorted than at any timein his life. For the next two months, he would wear an elastic mask each nightto force his face into shape and to combat the swelling. The true results, theysaid, would be revealed in late September or early October.

Even so, Sam could hardlywait to see his new face. Later, he remembered the bandages coming off. Thecool air on his face. The doctor backing away from the bed, and his mother movingin to help him.

He was unsteady, a coltlearning 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 athis reflection.

He focused first on thechin: It was rounder.

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

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

Days later, doctors releasedSam from the hospital, although they asked that he stay in Boston for severaldays so that he’d be close to the hospital if an infection set in. Painkillersmade the days bearable; so he and his mother explored a museum and visited FenwayPark to see where the Boston Red Sox played.

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

He showed his mother. Whenshe touched his chin, it hurt. She called the hospital. She was told to bringhim right over.

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

Dr. Jennifer Marler remembersthat she was on her way to the laboratory when she spotted the Lightners sittingon 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 waitthere. She walked over to the receptionist, picked up the telephone, calledthe lab and canceled her appointment — she had something more important to takecare of. She checked with the receptionist, found an empty examination roomand collected the Lightners.

Once in the room, she turnedthe lights low to calm Sam. The mass under his chin, she explained, was nota growth but a buildup of fluid.

He was fine.

What she needed to do, sheexplained, was to drain the fluid. She administered a local anesthetic, and— while she waited for it to take effect — studied this boy who had droppedinto 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 begunwith a simple photograph, one Campbell had taken as a way to show the desperationof Sam’s situation. That photo had haunted Marler. It was the photo that ledher to repeatedly petition the reluctant team of elite surgeons who would ultimatelygive in and bring Sam to Boston. It was that photo that would ultimately changehis life .¤.¤. and hers.

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

She touched his chin. Hedid 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 sayingas she jabbed him, I want you to promise to send me a photograph of you whenyou get home.

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

The Frontier Airlines jettouched down in Portland on July 20th. Sam Lightner made his way up the aisleand into the crowded terminal. He saw his father, brother and sister carryingballoons reading: “Welcome Home.” They all hugged Sam and told him he lookedgood.

The surgery was behind inmore ways than one. The family’s insurance company, negotiating directly withChildren’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. Theskin that had been peeled back during surgery, which had been so healthy inBoston, was pale and waxy. His mother remembers feeling his forehead on theflight and thinking he was running a slight fever.

On July 25, the Lightnerstook Sam to see Dr. Tim Campbell, the pediatric surgeon who had operated onhim when he was a day old, the doctor who had sent the plea for help to JenniferMarler.

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

The receptionist calledhis name. With effort, he pushed himself out of the chair and followed her downthe hallway to the examination room. His parents trailed behind. He climbedonto the examination table and let his head sag forward. His mother walked overand 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,” hesaid. “How are you?”

Sam slumped against thewall.

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

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

“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 ranhis hands over Sam’s face, checked the file and then walked over and touchedSam’s forehead, feeling the tube the Boston surgeons had sutured under the boy’sscalp. “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. Campbellyanked twice and drew out a clear line. “OK, big boy,” he said. “It’s over.”

Sam sat up, tears streakinghis face.

“He’s lost 10 pounds,” DebbieLightner said. “Some, I know, is from the surgery. But .¤.¤.”

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

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

“No,” croaked Sam. “No.Please.”

Campbell patted Sam on theshoulder, kept his hand there and talked to Sam’s parents. “I want him in therefor a day or two,” he said. “I want a blood culture, a blood count and I wanthim on IV antibiotics. I’m sure that blood count will be way off. I think hehas 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 headedback to the hospital.

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

Campbell patted Sam onceon 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,” DavidLightner told his son.

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

An attendant pushed Sam’swheelchair across an atrium and into the main hospital building. A nurse pokedat the boy with a needle while Sam cried and thrashed. She finally connectedwith a vein and started antibiotics flowing.

Sam checked into a hospitalroom 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 hospitalhalls, dragging his IV setup along with him.

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

But ...

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

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

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

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

Today he will register,officially joining the class of 2004. His sister asks him a question, but heignores 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 onFeb. 3, 2000. That night, he joined more than 1,500 students and parents. Hewas nervous then.

And now ...

He stands and checks outhis shirt. Brand-new — pulled from his closet for the first time just for thisday. He’s showered, and his hair is neatly combed. He walks downstairs and looksat himself in the mirror. He combs his hair again, carefully pressing the laststubborn strand into place.

He walks into the kitchento make himself lunch. He opens the refrigerator door — glancing at the listof 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 thebathroom countertop and swept the floor. He’s picked up the basement and vacuumedthe upstairs hallway.

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

Not today.

Not on this day.

Please.

“Mom.”

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

“Mom!”

His mother searches fora 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 outthe 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 theLightner 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 orientationnight, traffic clogs the streets around Grant. So Debbie Lightner has to parkfive blocks away. Sam and his friends step onto the sidewalk and walk throughthe neighborhood.

On that February eveningnearly seven months before, darkness cloaked the long walk, and Sam coveredthe distance almost invisible to everyone gathering at Grant. Today, the sunshines brightly on streets filled with students.

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

He walks on, his pals toweringover him. With Grant looming in the distance, all of them grow quiet. The groupspreads out as the boys climb the front steps. They head for separate metaldoors.

Sam pulls one of the doorsopen 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 yearsold.

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

The line snakes toward thecafeteria, where the students will get their schedules and receive their studentidentification cards.

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

Sam watches new studentsarrive and walk past him toward the end of the line. He turns to his left, towarda 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 administratormotions to him and then walks over.

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

“Fine,” says Sam, shakinghands 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 handdrop to his side.

“Say, you don’t have towait here in line,” he says. “I mean .¤.¤.”

The words hang in the air.

“Let me take you down theback way,” he says, rattling a set of keys. “I can get you in and out of herein 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 howyou must be feeling right now.”

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

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

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

He wriggles out from underthe man’s arm.

“No,” he says.

“What?”

“I’ll wait with the restof the students,” Sam says.

“But you don’t have to.”

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

The line moves, and Samwatches 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 ofstudents.

Then the line carries himforward to the first of several registration stations along the cafeteria’swall. Brian Doran, Sam’s friend from Gregory Heights, spots him in line, hurriesover and hands him a green piece of paper with a locker number and combinationon it. Brian, who arrived earlier, has already claimed the locker and requestedSam as a partner.

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

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

She studies him.

“Oh, Sam,” she says. “Youlook great.”

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

“Sam?”

Emilie Bushlen bustles upand leans close.

“Sam, can I see your schedule?”

He hands her his slip ofpaper.

“Sam,” she squeals. “Wegot word-processing together.”

He blushes.

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

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

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

He lifts the camera.

Sam Lightner looks straightahead. This is for the yearbook. This is for history.

He smiles. Broadly.

And a brilliant flash illuminateshis face.

© 2000 The Oregonian. Reprintedwith permission.