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From Public Opinion, Chambersburg, Pa., Saturday, September 20, 1997

TRAGEDY'S CHILD

Shawn Guyer licked leukemia as a child of 2. At 5, the little boy was cursed again: A bacterial infection took both arms and legs. His story, and his parents' despair and faith, make this tale at once disheartening and uplifting. The battle has just begun.

By MELVIN DURAI
Staff writer

    Three months ago, on a warm night in St. Thomas Township, a father turned on an outside light so his 5-year-old son, a leukemia survivor, could ride his
new bike. A mother walked alongside the purplish bike, afraid its training
wheels wouldn't keep her child from falling.
    Steve and Penny Guyer had just bought the 16-inch bike for Shawn, a chipper, playful boy with straight, blond hair. He had begged for it for months and they finally gave in, despite Penny's concern that he might get hurt. Shawn
had worn a big grin as he pushed the bike through K mart, announcing to
other shoppers, "I got a new bike."
    It was a happy time for the Guyers. Their only son seemed like a typical 5-
year-old: he loved to play with his many toys and would shadow his father
everywhere. And he was looking forward to joining kindergarten and riding
the school bus this fall. "Is it time to go to school yet?" he asked all summer.
    His parents were excited, too. Said Penny: "We couldn't wait until he was a
normal kid, going to school with other kids."
    But Shawn never got on the school bus and may never feel normal.
    In late July, the boy who struggled to beat leukemia encountered the second
enemy of his young life. While the new bike sits in a garage, its exuberant
rider lies in a hospital, helpless and glum, no arms, no legs. A victim of a
bacterial infection, he can't even squeeze the stuffed animals that sit on
his bed.
    Amid tears, his family struggles to accept how one little boy can be put
through so much pain, how almost everything he loved to do can be ripped
away.
    "We keep picturing his body the way it was and we want it back," Penny said. "We just have to accept that he's never going to be like that."
    Their emotional struggle overshadows financial concerns: they have to
overhaul their lives and home.
    Penny hopes their story will teach other parents to appreciate their
children. "These people abusing their kids, if they just saw us fighting for
ours, maybe they'd change their attitude."

                          * * *

    "I don't think any boy was more loved and wanted than he is," said Penny's
mother, Lyndall Weller, of her grandson Shawn.
    Even without his medical problems, he would have floated in a pool of
affection. He was born to a family that cherishes children -- a mother who
protects them, a father who adores them, grandparents who pamper them.
    Steve, 36, a parts handler at Grove Worldwide, and Penny, 32, a homemaker, are hardly wealthy, but still managed to give Shawn and his sister the frills of childhood: stacks of movies, rows of toys, hours of attention.
    Steve and Penny's main entertainment was staying at home with the children
or visiting the grandparents. Even on wedding anniversaries, they never took
trips away from the children.
    The couple, who met as teenagers and married in 1983, had grown up in close families in Franklin County and wanted the same for theirs.
    They hoped for two children, a boy and a girl. One wish came early: a
daughter, Tiffany, in 1984. The other seemed elusive.
    For seven years, they kept trying for another child, mostly because Steve
wanted a son.
    He wanted to feel the bond he and his two brothers had with their father. He
dreamed of taking his son hunting and fishing, doing yardwork with him,
teaching him how to fix cars.
    In 1991, a home pregnancy test brightened their faces. Another child was
due.
    When the baby arrived at about 2:30 a.m. on Feb. 3, 1992, Steve was there to welcome him. "It's a boy, it's a boy," he announced to the beaming mother,
admiring their 7-pound, 13-ounce overdue package.
    "I was all excited," Steve recalled. "I had what I wanted."

                          * * *

    Shawn was healthy at first. A normal round-faced baby with sky-blue eyes and a ravenous appetite.
    He craved attention, liked to be held. Steve and Penny kept his crib in
their bedroom. They lived in a two-bedroom trailer then. "Tiff," as they call
their daughter, slept in the other bedroom.
    The trouble started two years later.
    In March 1994, Shawn developed an ear infection, then red spots like pencil
marks appeared on his chest and stomach.
    The spots began to spread and were followed by mysterious bruises, all over his body.
    Uncertain about the symptoms, their doctor ordered blood tests, then called
to say the results weren't good.
    The doctor was almost certain Shawn had leukemia and asked the Guyers to admit him to The Milton S. Hershey Medical Center in Hershey.
    Dr. Barbara Miller, an oncologist, ordered other tests of his blood and bone
marrow. She sent samples to a specialist in Toronto, Canada.
    Awaiting the results, the Guyers slept in the hospital, beside Shawn's bed.
They hoped. They prayed.
    Their worst fears came true. Miller said their 2-year-old boy had Juvenile
Chronic Myelogenous Leukemia, a rare disease that accounts for no more than 5% of all childhood leukemias. His body could not produce blood cells and platelets.
    He needed a bone marrow transplant and the removal of his swollen spleen.
He was given a 50% chance of survival. Heads he lives, tails he dies.
    The Guyers couldn't eat, sleep, or hold back the tears. Even Steve, usually
unemotional, broke down and cried.
    "It was like a nightmare," Penny said. "It feels like the world's falling on
you. You go from having what you think is the perfect family to everything
going crazy."


                          * * *

    Steve, Penny and Tiffany had their blood tested to see if they could be bone
marrow donors. They were relieved to find that Steve was a match -- not
perfect, but close enough to try a transplant.
    In April 1994, Shawn had his spleen removed in Hershey, then went to the
Children's Hospital of Philadelphia for the transplant. He first underwent
chemotherapy and radiation treatment. Most of his hair fell out.
    He had started talking before the leukemia, but now clammed up.
    Steve took 2 1/2 months off work and stayed with Penny and Tiffany at a
Ronald McDonald House, a dwelling for families of sick children.
    On the morning of the transplant, doctors sedated Steve, drilled two holes
into his hip bone, and extracted a quart of marrow. It was treated and
pumped into Shawn's blood stream later that day. Though Steve was stiff and shaky, he stumbled through the hospital to watch the transplant.
    "I had part of me trying to save his life," he said.
    Attached to several tubes in a germ-free room, Shawn developed
veno-occlusive disease, a complication of the transplant.
    The veins in his liver clogged and his liver and kidneys malfunctioned. He
gained 17 pounds of fluids.
    His body didn't respond to a special medicine. There's nothing else we can
do, a doctor told the Guyers.
    "I'm not going to let him die," Penny replied. She convinced the doctors to
double the dosage of the medicine.
    It worked. Shawn's body responded, beginning a painful and slow recovery.
Because he didn't have a spleen, a vital organ in removing bacteria from the
blood system, he would have to take antibiotics for the rest of his life.
    For months after returning home, he took steroids and other drugs to
suppress his body's reaction to his father's marrow.
    The steroids gave him a huge appetite. Penny fed him constantly.
    His belly and cheeks ballooned. His bones ached and his balance failed. He
could crawl around, but had to learn how to walk again.
    He was isolated from people for several months. His family spent much of
their time at home, nursing him.
    "It wasn't a relaxing lifestyle," Penny said. "I wouldn't wish it on
anybody. I was too afraid to go to sleep, especially if he was sick or had a bruise."

                            * * *

    Steve, who keeps a photo of his children in his pickup truck and several in
his wallet, resolved to give Shawn the best life possible.
    "My kids, I'd rather have them better than myself," he said. "As long as
they were happy. They came first."
    By 1996, Shawn had almost completely recovered. He was a hyperactive boy, staying awake from 7 a.m. to 11 p.m.
    He savored red Hawaiian punch, but didn't care much for candy and cake. He enjoyed broccoli, peas and green beans. As a snack at night, he ate a can of peas, heated in the microwave.
    He liked to work in the garden with Steve. As a gag, Penny bought them white hard hats, which they wore while cutting dead trees in the yard.
    Shawn sat on Steve's lap and helped steer their riding lawn mower. "Let's go for a ride," he'd say.
    When Steve crawled under his truck to repair it, Shawn wriggled beside him.
Steve took him fishing and mushroom hunting.
    "Shawn was Steve's shadow," Penny said. "He never got two feet away from
Steve."
    He was as naughty as any other boy.
    During his sister Tiffany's softball game, he ran into the outfield and
interrupted the game. He and Tiff tried to paint a white picket fence in
their backyard, but got into a paint fight. Splotched with paint, he left a
handprint on the porch.
    "Everytime I'm talking on the phone with my friends, he has to get on and
say 'Hi,'" Tiffany said.
    His antics rarely upset Penny, who was glad to see him healthy and happy.
    Once, while she was cooking, he opened a canister and spread flour over
hands, face and floor. She laughed and got her camera.
    He was often the first to jump into their rectangular in-ground pool,
however cold the water. He played with dozens of toy trucks and fire engines. He wanted to be a firefighter, like his uncle Kevin Weller.
    His parents and grandparents lavished gifts on him and Tiffany. Steve and
Penny didn't buy each other Christmas gifts, but spent about $600 on each
child.
    Shawn owned about 20 riding toys, most of them stored along one side of the garage. He especially liked an electric-powered blue Jeep and a Big Wheelie bike.
    Always protective, Penny sat on her deck and watched the children when they played in the pool or in the fenced-in backyard. When Shawn climbed the
ladder of a sliding board, she stood behind him.
    "I just love my kids and don't want them hurt," she said.

                            * * *

    July 29, 1997. A day the mother will never forget.
    "Mom, are they going to cut my ear off?" Shawn asked before a visit to a
doctor to have his ear infections checked. She assured him they wouldn't.
    After the visit, Penny and her children stopped at a couple of stores, then
visited Penny's mother, Lyndall Weller.
    While Tiffany and Shawn stayed at the home, Penny and her mother went to the post office. When they returned, Shawn said his head and stomach hurt.
Penny gave him Tylenol. He threw it up. She took his temperature. It was 104
degrees.
    Panicking, she rushed Shawn to the emergency room of Chambersburg Hospital. The staff examined him, took X-rays and wanted to admit him. But they called one of his regular doctors in Hershey, who said he probably had the flu and could go home.
    Penny was relieved. Shawn lay in his blue Little Tikes car bed, getting some
rest. At about 7:30 p.m., he asked Penny to turn his television off. He was
drowsy and breathing hard. His lips were pale.
    She rushed him back to the hospital. She was too shaken to think of calling
an ambulance.
    "Is he still breathing?" she continually asked Tiffany, who sat with her
brother in the van.
    The hospital staff drew his blood for testing. He looked dehydrated and his
blood pressure had dipped too low. They decided to air-lift him to Hershey.
He was too unstable for an hour-long ambulance ride.
    Penny called Steve and he left work immediately. Shawn's grandmother,
Weller, went to the hospital, too.
    The family was in tears as they watched Shawn's stretcher being loaded onto a helicopter.
    They followed in their van, nerves jittery.
    "We didn't know what to expect when we got there," Penny said. "We didn't
know if he'd be alive."

                        * * *

    A nurse told the Guyers that Shawn was in bad shape. He had a 50% chance of surviving. Another flipping of a coin and their hearts.
    Steve and Penny slept barely 15 minutes that night. They cried and fretted
in a small lounge beside the pediatric intensive care unit.
    The doctors knew Shawn had a bacterial infection but didn't know what kind.
They put him on a ventilator to help him breathe and save his energy to
fight the infection. They fed him medicine through tubes in his chest, arms and
legs.
    His ears, nose and limbs turned purple.
    Two days later, the bacteria was identified as Streptococcus pneumonia, a
common type that causes illnesses such as pneumonia and sinusitis. It had
somehow entered Shawn's bloodstream, where it could be deadly.
The strain of Streptococcus infecting Shawn was rare: it had developed a
resistance to the antibiotics he was taking. Without a spleen, his body
strained to fight it, lapsing into a condition called septic shock.
    His white blood cells produced proteins that fought the bacteria, but also
injured body cells, said Dr. Steven Lucking, director of the intensive care
unit. Another defense mechanism was triggered: massive blood clotting, which
blocked his blood vessels.
    "It compromises the hands and feet, primarily in children," Lucking said.
    Doctors and nurses gave Shawn medicine and rubbed cream into his skin to try to improve his circulation.
    His mother slept in a hospital lounge nearby, his father and sister at a
Ronald McDonald House. They were together early morning to late night, often
on a cushioned bench in the hallway.
    They visited his room several times a day. He was numb, but occasionally
moved his eyes and lips. When his parents talked, when his sister read books
and get-well cards, he said nothing.
    They controlled their emotions in his room, in case he was aware, but the
moment they stepped out, the dam in their eyes burst.
    "Everyday we would go in and hope his arms and legs were getting lighter,"
Penny said. "And everyday, they got darker and darker."

                         * * *

    A week into the hospital stay, doctors told the Guyers that Shawn would
definitely lose the tips of his fingers and toes, and his heels.
    The doctors had killed the bacteria, but couldn't perform the surgery until
they saw how much of his body would recover.
    His nose and ears improved, but his limbs turned a shiny black and felt like
a turtle shell. Large blisters formed on the upper sections of his limbs, as
though he had burns. Nurses wrapped those areas in thick gauze.
    Steve and Penny couldn't bear to look under the gauze. Some nurses flinched, leaving his room in tears.
    After two weeks in the hospital, Penny slept at the McDonald house,
returning with her family each morning.
    Grandparents and other relatives comforted them. Cards poured in, some from strangers who had heard about a little boy's plight.
    The Guyers cried and prayed and watched their son's hands and feet shrivel
up and turn as hard as rock.
    They knew Shawn would need prosthetics, artificial limbs, for at least part
of his hands and legs. They prepared themselves by reading pamphlets in the
hospital.
    The day before the surgery, doctors told them he would lose at least half of
his legs, most of one arm and a small part of the other.
    They were asked to sign a document allowing doctors to keep cutting upward, from his feet and hands, until they found healthy tissue.
    The Guyers signed the paper, agonizing over their decision.
    My God, look at his body laying there, Penny thought. What's he going to
have left?

    Later, Steve shared his anguish with her: "It sounded like they were cutting
him up like a side of beef."

                         * * *

    Before the surgery, a nurse made an impression on a heart-shaped slab of
plaster. She gave it to the Guyers, their son's last hand and foot prints.
    At 1 p.m. on Thursday, Aug. 21, as Shawn was wheeled into the operating
room. Steve and Penny walked alongside him and kissed him.
    Then they went to a waiting room, where about 25 friends and relatives had
gathered. Penny placed a worn green blanket over her shoulder, one that
Shawn had slept in since birth.
    "I knew it was his security and I wanted it with me," she said later. "It
smelled like him."
    At about 4:30 p.m., a nurse came to console the Guyers, thinking they had
already heard about the surgery. "How much did he lose?" Penny asked.
    All of his legs and arms, the nurse told them.
    "What's my baby going to do with no arms and no legs," Penny cried. She
dashed into a nearby bathroom, smacked her back against a wall, slid down
and shouted, "No. No." Then she wept.
    So did Tiffany and Steve and many others in the hospital that day.

                        * * *

    As terrible as it was, it could have been worse.
    Shawn could have died. It's extremely rare for a child to lose all his
limbs, but many die from the infection, Dr. Lucking said.
    And Shawn could have lost his hip and shoulder joints as well.
Tiffany, who has her mother's dimples and caring nature, visited Shawn
first.
    She was afraid, but really wanted to see him.
    Balls of gauze covered the short stumps of his limbs. He seemed to have
shrunk.
    When he gets home, what's he going to do, what's he going to think? she
thought.
    When Steve saw Shawn, his knees buckled and a nurse grabbed him from behind. Penny cried as the nurse escorted them out.
    Dr. Lucking came to comfort them, his eyes watering.
    "Do we have the right to want Shawn here?" asked Penny.
    The question or versions of it kept popping in their minds.
    Is it fair to make a child live like that? He was such an active, happy
child -- what will this do to him?

                         * * *

    For days, the Guyers kept picturing the boy who couldn't sit still, the boy
who kept running around, the boy who loved to get his hands into everything.
    "Why does one kid have to go through everything," Penny asked. "He had
leukemia and now this."
    Several times in the hospital, Shawn cried as he looked down at the space
where his legs were.
    His parents wondered what was going through his little head. Did he think he
was punished for doing something wrong?
    But their focus slowly shifted to the future and making the most of what
they had.
    "He's still our boy," Penny said. "It's still his head, it's still his eyes,
it's still his heart."
    Hearing about a couple who lost both their children in a car accident, they
were grateful they still had theirs.
    "If that were both my kids dying, you might as well just bury me," Penny
said.
    After seven weeks of silence, Shawn spoke his first words last Saturday
night. "I want my mummy," he said to a nurse.
    Penny heard the news the next morning when she called from the McDonald
house. She hurriedly dressed up and rushed over.
    He said "mummy" twice that day, once when Penny was in the room. "It made my
day," she said.
    Monday was an exciting day, too: Shawn moved from intensive to intermediate care.
    He was asleep when his parents visited him, his dinner on a tray beside his
bed.
    He was attached to two tubes, one through his nose and another his chest. A
purplish scab spotted his nose and ears. His legs weren't visible past his
blue shorts. His arms protruded a few inches past the sleeves of his white
shirt.
    "Shawn, hi! Wake up, buddy," Steve said, rubbing his cheeks and hair.
    "You want something to eat? You hungry?" Penny asked softly.
    He stirred, struggling to open his stunning blue eyes.
    Steve held his head forward and Penny put a can with a straw to his mouth.
He sipped the drink vigorously. It was his favorite, Hawaiian Punch. Steve had
found it in a soda machine.
    "You want mashtaties?" Penny asked, holding a spoonful of mashed potatoes to his mouth.
    He ate little and looked glum. But he moved his right arm -- what's left of
it -- and rubbed his cheek.
    Every smile, every word, every movement gives his parents hope.
They have talked to doctors about prosthetics, artificial limbs. They
believe he'll be able to use his arms for simple tasks, but will be in a wheelchair.
    He began rehabilitation Wednesday, learning how to move his head and other parts of his body. It will be at least two months before he can be fitted
with prosthetics.
    Friends and relatives are collecting donations and organizing fundraisers
to help pay for the costs of modifying the Guyer's bi-level home for Shawn and
his wheelchair, and buying a van with a lift. Steve's insurance and Shawn's
medical assistance will pay for his hospital bills, but the family has many
other expenses. Steve hasn't worked for seven weeks.
    When they return home, there will be many painful reminders of Shawn's
missing limbs: the shoes in the closet, the spoons in the kitchen, the white
handprint on the porch, the new bike in the garage.
    They wonder how he'll deal with it, but they're determined to give him a
good life, to make the most of this tragedy, to be thankful their son is alive.
    "It's going to take a long time, but we'll make him happy," Penny said.
    Thursday afternoon, she placed him in a wheelchair and pushed him outside
the hospital for a break from his room.
    She kissed him and said, "Shawn, you're here. I can still kiss your cheeks."
    Then she kissed him again and again.
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