THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Monday, March 18, 1996 TAG: 9603180032
SECTION: FRONT PAGE: A1 EDITION: FINAL
SOURCE: BY LORRAINE EATON, STAFF WRITER
DATELINE: VIRGINIA BEACH LENGTH: Long : 202 lines
It was in September, just at the start of his senior year, that Jason DeGutis first felt the bump on his neck, a little ridge about as wide as one of his drumsticks but only a couple inches long.
He wasn't scared. It was just a thing.
Jason, 18, kept jamming with his three-man band, The Lost. He went sandboarding on weekends and to classes at First Colonial High during the week - all the usual stuff that consumes a teenager's life.
Then the thing started to grow. Jason took to wearing shirts that concealed the strange lump of flesh under his left ear. He cocked his head a certain way so that his shoulder-length hair would hide it from the world.
But the ridge was real and people noticed.
``We joked that it was a goiter,'' said Stephan LaBoccetta, 17, a First Colonial junior, member of The Lost and one of Jason's closest friends.
Teachers saw it. So did his guidance counselor, Marcia Gutnick. His mother, Lindy Burd, noticed it, too. Her son did not have medical insurance, so she and Jason went to a public health clinic, where he was prescribed antibiotics.
But the thing kept growing. By November, it was the size of a baseball. He told his guidance counselor that it hurt to turn his head. She and his mother talked and decided to press the public health clinic to refer him to a specialist.
On Dec. 21, days before Christmas, Dr. Scott R. Morin, a Virginia Beach ear, nose and throat specialist, stuck three silver needles into Jason's neck to withdraw fluid while his mother held his hand and squeezed tight.
The worries were many. Jason's mom in June was hired full time at Lillian Vernon, a job that offered health insurance. But with money so tight, she had to choose between insurance for her or for her son. She looked at Jason; he was so healthy, had always been healthy. She had endured a bout of cancer at 27. The choice seemed obvious at the time.
``The money part of this scares me,'' she wrote in a journal she started the day they drew the fluid. Through Christmas and into the new year, Jason and his mom hoped that the tumor was benign, the good kind, the kind that won't kill you. On Friday, Jan. 5, after a 90-minute surgery to remove some of the lump, the doctor said ``malignant'' - not benign. And the whole world changed.
Less than two weeks later, Jason sat in a room at King's Daughters with adults all around him, talking to him and about him, telling him the thing could spread to his spine and his brain and even kill him if left untreated. For Jason, it was like watching television and the guy on the screen looks just like you.
``It didn't seem possible,'' he said.
Cancer of any kind is uncommon in adolescents, and the type Jason has, non-Hodgkin's lymphoma, is third on the list of cancers affecting people in his age group, said Jason's doctor, Rebecca L. Byrd, director of the Division of Hematology and Oncology at Children's Hospital of The King's Daughters. She is an assistant professor at Eastern Virginia Medical School.
With treatment, his chances of survival are about 80 percent. The treatment, though, is severe - three 28-day rounds of chemotherapy to kill the cancer cells. There are endless shiny needles and medicines with names like Vincristine and Methotrexate that fight the cancer but bring on side effects, such as hair loss, vomiting, mouth ulcers, inflammation of the eyes, and tenderness in the hands and feet.
The treatment is also expensive. Even before Jason started chemotherapy, his bills topped $10,000. With the added treatments, they'll rise to many thousands more.
Right before Christmas, Lindy spent a tense day filling out forms for Social Security and Medicaid, looking for anything that would whittle the growing pile of bills. News about assistance could take up to 90 days.
Jason's classmates moved much faster. Soon after students found out that the thing was deadly, they rallied around Jason, organizing fund-raisers that have brought in nearly $3,000. Every club and every clique seems to be involved, though hardly anyone knew Jason.
No matter, the fund-raising goal is set at $15,000.
``It's overwhelming,'' Jason said.
Jason's mother, too, is overwhelmed by what she calls the ``power of the kids.'' The money and the fellowship bring much comfort and peace of mind, but she still must find ways to deal with the demon in her own way.
On certain pages in Lindy's journal there are jagged lines - up, down, up, down, higher, lower, lower and up - the pen pressed down so hard onto the page that the imprint lingers into the future.
The first lines were drawn on Jan. 6, the day after the tumor was removed and doctors said ``malignant.'' She knew she'd have to tell Jason, but his hope after the surgery was too precious to shatter.
``Jason had tears in his eyes - he was so happy that it's over'' she wrote. ``I couldn't tell him that Dr. Morin says it's malignant. He's happy that it's over.''
``I wanted to take it home and candy-coat it,'' she said later.
The next day, a Saturday, Lindy told her son. That night she wrote, ``He looks like a scared little boy. Please help me God to help my son.'' Then she sat down alone in her apartment and drew the mountainous lines.
Since then, Jason and Lindy have devised many ways to face the day. Jason plays Scrabble with his grandfather, Charles Hedrick. He spent an entire day with his sister, Kathy, who flew in from Tampa, Fla. They hadn't seen each other in three years. There's the mail. He recently got a card from his father, who lives in Pennsylvania, a good turn in a rocky relationship. The homebound tutor comes in for lessons. And of course, there are the visits from Stephan and JamesBarnes, the other members of The Lost. Together they blow up rubber gloves into balloons, play with the controls on the hospital bed, listen to the Red Hot Chili Peppers and talk about anything but the thing.
``I tell myself every day that I don't have cancer, sort of self-visualization,'' Jason said. ``I have heard about people curing themselves.''
They also do this ``deal thing with God,'' Lindy said. ``Like we said, OK, God, let him keep his hair.''
They thought for a time that it had worked, but after the first round of chemo, Jason ran his fingers through his thick hair and, unbelievably, clumps of reddish-brown strands came out.
``OK, Mom, let's cut it,'' Jason said. And so a woman from the American Cancer Society came over and gave him a buzz cut.
Jason thought about dyeing the rest purple, and his mom found herself at Peabody's one afternoon asking about purple haircoloring. Later the doctors said that the chemicals could harm Jason, so maybe later.
Halfway through Round 2, Jason looks tired. He's dropped from 149 to 130 pounds. These are the worst days. He can't eat much and the drugs have made his feet so tender that he can't walk. He just wants to go home.
Two weeks ago, Jason started a self-portrait using his framed graduation photo, which sits at his bedside, as a model. Half of the pencil drawing looks like Jason looks in the picture. In the other half, the hair is erased and replaced by scattered dots. There is a tear on the cheek.
``That's my cancer side,'' he explained, sitting on his hospital bed, his head level with his bent knees.
The first round of chemo was beyond anything that Jason ever expected. Sure, he had read about the side effects, but experiencing them was different. It was during this round that Jason thought the cancer was stronger than he was. It was too much to deal with, too much pain, too many needles, too many drugs, too much vomiting.
``I threw up like a billion times, all through the night,'' Jason said. ``I didn't want to go through this anymore.''
But his friends were there to help.
``Jason, you have graduation coming up,'' Gutnick, his guidance counselor, told him. ``They told you this was going to happen.''
Halfway through Round 2, Jason is doing better. At least, he says, he knows what to expect.
Prom. Then graduation. Then summertime, when he and Stephan and James will go bodyboarding all day, every day and then stop at Bella's for a massive slice of pizza that costs $1.25 and is addictive - this is what Jason looks forward to.
Until then, with the help of family, friends and strangers, mother and son are making their way through it one day and one night at a time, cutting deals with God and searching for the crack in the door where the light - and the hope - seeps through.
Sometimes Lindy will talk to parents of kids who have had non-Hodgkins lymphoma. She always asks, ``Are they still alive?''
The answer, too often, is ``no.''
But new treatments and the first-rate care she believes Jason is getting at King's Daughters have led Lindy to rationalize that ``if you are going to have cancer, now's a good time.'' And she keeps reminding herself and her only son that some kids do a year of chemo to defeat the demon.
And even when he's throwing up his guts, Jason says, ``I know, Mom, I'm fortunate.'' MEMO: Jason's cancer unites student body/A4
ILLUSTRATION: [Color Photos]
STEVE EARLEY PHOTOS
The Virginian-Pilot
Jason DeGutis, 18, is undergoing his second round of chemotherapy.
His split self-portrait has a healthy side and a bald,
cancer-stricken side. At top, in one of the fund-raisers his
classmates have organized, donors bought paper stars to hang in the
cafeteria.
First Colonial seniors Amanda Baker, left, and Jacey Anderson talk
to teacher and senior class sponsor Lee Land about raising money to
help with Jason's hospital bills.
HOW TO HELP JASON
Jason DeGutis Day, Saturday
First Colonial High School, 1272 Mill Dam Road, Virginia Beach:
Giant yard sale and bake sale with proceeds to benefit the Jason
Fund. 8 a.m. to 12:30 p.m.
24th Street at the Oceanfront: Students, teachers and others will
take the plunge into the ocean for Jason at 3:30 p.m.
For details about these two events, call the school: 496-6711
March 26 and 28
Strawbridge Skating Center, 2180 Malcolms Way, Virginia Beach.
427-1668.
Skate from 7 to 11 p.m., admission $4.50, proceeds to the Jason
Fund.
KEYWORDS: CANCER by CNB