Brain Tumor: Old Soul Forever Young

7:08 pm Health Stories

CANCER CLAIMED LIFE OF JUSTIN LIVA AT 14,
BUT HIS SPIRIT LIVES ON

Page: 1A
By DAWN SHURMAITIS; Times Leader Staff Writer

Shelley Liva leans close. She grins.

“Justin would probably kill me if he could hear me telling you this,” she
says, rolling her hazel eyes toward heaven and pausing, as if waiting for a
signal.

Then, the stories tumble out.

Justin in the kitchen, chopping fresh garlic for spaghetti sauce he made
every spring for the school picnic. Justin at Harveys Lake catching fish
with his dad, Phil, and little brother, Andrew. Justin at his computer,
lost in his own fantasy city.

When Shelley Liva talks about Justin — who died last September after
fighting a brain tumor — her eyes don’t fill with tears.

Her eyes dance.

“He was a riot,” she says of her first born, who lived to age 14. “He’d go
to school all day, go for radiation. No problem. Except he lost his hair.

“He was an old soul.”

This week, the old soul is being remembered anew by Justin’s family,
friends and fellow worshipers. A year ago, they were readying for a double
rite of passage — Justin’s 8th grade graduation from United Hebrew
Institute and his 14th birthday, which fell on the same day — June 7.

Justin suffered a massive cerebral hemorrhage and missed both celebrations.

Before that final illness, Justin wrote a speech in anticipation of
entering high school.

By that time, he had already endured four surgeries, chemotherapy and
radiation. His body ballooned from the steroids used to help shrink the
swelling in his brain. Damage to the right side of the brain made his left
hand and leg nearly useless.

A teacher and family friend read the speech for Justin at graduation. She
re-read it at his funeral.

Since then, Justin’s solemn, thoughtful words have picked up a life of
their own. His speech has been passed among friends, teachers and leaders
from the United Orthodox Synagogue in Wilkes-Barre.

“I’m not sure if perseverance or the ability to overcome the fears and
problems that face me is a distinct personality trait of mine or not,”
Justin wrote. “What I do know is that I have had to adapt that trait to
help me keep ahead of my illness.

“And I’ll keep that trait so that with God’s help I can eventually overcome
it.”

Confronting a killer

“I had a whole family of imaginary people that I put through such things as
car crashes, diseases, etc. These injuries usually left them in the
hospital in bad shape or dead. In spite of a death in the family, the next
day I had forgotten about it, and the family member was alive again.”

— From the autobiography of Justin Liva, written at age 11

Pictures arranged on the piano in the family home on Willow Street in
Wilkes-Barre capture happy times: Phil, Shelley, and the boys, Justin and
Andrew, now 9. The grandparents, Sam and Frances Rubin, Enzo and Frances
Liva. The aunts, uncles, cousins.

The photo albums are filled with memories: Justin’s Bar Mitzvah. The
Make-A-Wish Foundation family trip to Italy. Justin, Andrew and Dad
building sand castles at the Jersey shore.

The Liva “men” were close. Phil Liva remembers spending many a late night
in the living room with Justin, watching their favorite TV shows on the
Comedy Channel.

“We would have a hilarious time,” Phil Liva recalls. “Mom would be
upstairs, listening to us cackling.”

The cancerous tumor started growing inside Justin’s head on the right side
of his brain between his ear and forehead. No one knows exactly when, or
why, it started. Nothing — surgery, radiation, chemotherapy — could kill
the cells or prevent the tumor from growing.

Justin’s case was not unusual, says Dr. David W. Greenwald, a Kingston
oncologist who treated the boy during the last two years of his life.
Treatment fails to cure cancer 60 percent of the time.

When Justin was first diagnosed in 1990, doctors gave him six months to
live. He lived five more years.

In great part, Greenwald credits Shelley Liva.

“She was a heroic figure in my mind,” Greenwald said. “She would do
anything for him. Whatever it took, she would do.”

Anything included traveling across the country — to Texas, New York,
Philadelphia, Boston — for new doctors, radical treatments, experimental
drugs.

Phil Liva, a chiropractor, placed his faith in alternative health care.
Vitamin C. Green algae. Extract of Venus Flytrap.

“Anything alternative, we bought it, we tried it,” Shelley Liva says.

The side effects — terrible headaches, nausea, lethargy — were as
obnoxious as the treatments themselves.

“He had all the horrible things one could get. He stayed alive long enough
to get just about every complication,” Greenwald said.

Greenwald compares the Livas’ fight to find a cure for their son to the
parents in the movie “Lorenzo’s Oil” — who also used networking, computer
searches and extensive library research to find help for their sick child.

In the movie, the child lived.

“Things had to be difficult. There had to be stress — emotionally,
financially and physically,” Greenwald said of the Livas’ struggle.

Phil Liva spent so many days away from his practice, his business went
under. He began to feel defeated by Justin’s illness. Shelley Liva refused
to give up.

“I would hope I could be that courageous,” Greenwald says. “Justin’s life
was short. But he was loved and cared for.”

No special treatment

“In September of 1990 things went down hill. My grandparents took my
brother and me to Claw and Paws zoo and I was getting a terrible headache
and was a little nauseous. I didn’t think much of it because it was hot,
and the heat does that to me.”

— Justin’s autobiography

Amid a classroom full of yarmulkes, the boy in the baseball cap stood out.

Justin was allowed to wear the cap because it covered a bald head. It was
one of the few exceptions to school rules Justin allowed himself.

His 8th-grade teacher, Hadassah Ganz, offered a second set of books so
Justin wouldn’t have to lug a heavy book bag.

He refused.

His classmates would wait, sometimes patiently, sometimes not so patiently,
in the hot lunch line as Justin struggled to balance a wobbly glass of
juice on his tray.

But before they’d come to his aid, the kids would wait for “the eye” as
Ganz called it — her signal to finally offer a hand.

“He wanted no pity, no help,” Ganz said. “He told me `I don’t want to be
different from anybody else.’ ”

When they describe him, his teachers use words like serious, bright,
unassuming. Mature.

Justin was a master of detail.

After his death, his mother and teachers found pages of lists he’d left
behind in his desk and on his computer. Lists of ingredients for favorite
recipes. Lists of materials to build more imaginary towns — specific right
down to the brand of nails.

The day before graduation, Justin attended rehearsal in his cap and gown.
For once, he agreed to special treatment. Instead of walking up the aisle
with his classmates, he agreed to meet everyone at the stage.

Happy with the compromise, a little giddy, a little nervous — just like
the other kids — Justin went home.

Within hours, he was in an ambulance on his way to New York University
Hospital. He spent his 14th birthday barely conscious, readying for a
fifth, and last, surgery.

Sophie Pernikoff, his Hebrew kindergarten teacher, delivered Justin’s
speech at the graduation.

Justin wrote, “There is too much good in life to let the challenges stop me
from going on and making the most of it.”

The day of his funeral, the hearse detoured so Justin could pass by his
school one last time. After he died, a bench for reading was placed in his
memory in the front foyer.

Justin’s bench, the kids call it. It’s a quiet place.

A place just like Justin.

Withstanding the test

“I had surgery in New York that took out most of the tumor and boy was that
a mess. I lost 1,500 milliliters of blood, and I needed a transfusion.
There was a squeeze ball and tube that was hanging out of my head that
excess fluids drained into.

“Three months later they wanted to do it all over again, and they did.”

— Justin’s autobiography

Justin’s Hebrew name was Yosef Abba Ben Sarah. Because Jews believe adding
a name will help someone sick live longer, Justin also was called “Chaim.”

The word means life.

The Jews believe we are in this world to earn a better place in the world
to come. When you die, God judges your good deeds.

But what about the children whose time is cut short?

What about Justin?

For an answer, Ganz points to Justin’s speech. He chose the story of
Abraham to help illustrate the many ways God challenges the faithful.

“Even if the tests seemed hard or risky, Abraham withstood the tests and
his undying faith in God was rewarded,” Justin wrote. “We are told that God
only tests each person at the level he knows to be appropriate for that
person.”

Ganz marvels at Justin’s words.

“This was a kid with cancer who understood things many adults do not,” she
said. “I think he was letting God lead him.”

The Liva household was half Jewish, half Italian. His mother, while Jewish,
did not always keep a kosher kitchen.

But Justin did.

He insisted on keeping the special foods in a separate freezer. Next to the
family Christmas tree, Justin kept his Menorah.

“When it came to religion, he was a sponge,” says Pernikoff, whose husband,
Rabbi Mayer Pernikoff performed Justin’s circumcision when he was 8 days
old.

“If he could have lived in our hearts and prayers, he would have lived a
thousand years.”

Determined to the end

“Right after my Bar Mitzvah, I found out the drug I was on was not working.
The next step taken was two drugs, Vincristine and CCNU. I was on this for
several rounds and a few months later I found out this also was not
working.”

— Justin’s autobiography

By the time of the annual United Hebrew Institute picnic in June 1995,
Justin’s health was failing.

But he was determined to follow tradition and make his spaghetti sauce.

“He drove me nuts,” Shelley Liva says, laughing at the memory of the two of
them in the kitchen earlier that spring, cooking five huge pots of sauce.
“With one hand he’s chopping all the mushrooms and onions and making 50
pounds of meatballs. With one hand.”

By summer’s end, the headaches were much worse. But Justin asked his
parents to take the annual family trip to the beach.

“He said to me `Mom, you’re not going to give up on me now, are you?’ ”

The first day, Monday, was a good day. Justin couldn’t get out of his
wheelchair but he was happy just to look at the ocean. Tuesday, he wiggled
his toes in the sand.

Wednesday, he suffered a seizure. The trip was over.

Justin didn’t want to talk about death. The closest his mother came was two
days before he died, when she asked if he was afraid.

“He told me `No, Mommy, I’m not.’ ”

The last words Justin said were to Andrew: “Somebody please help me.”

Remembering Justin

“I don’t know what college I want to go to. I’m not even sure about high
school, but I want to major in business management and own an appliance
factory.

Now you know how strange I really am, and if you knew more you would
consider me dangerous and have me committed.”

— Justin’s autobiography

Since her son’s death, Shelley Liva has returned to the classroom as a
substitute for the Wilkes-Barre Area School District. She tells stubborn or
frustrated students stories about Justin, his determination, his refusal to
give up.

Phil Liva believes in reincarnation. He says he told Justin he would be
with God. He believes that.

“Justin had such a dynamic and seemingly powerful personality. I never
expected him to die. It was as if his strength and determination alone
would see him through,” Phil Liva says. “I’m positive that that personality
lives on. Wherever he is.”

The day after Justin’s funeral, Andrew had a dream. His brother was alive,
and strong.

“He came to the door and he hugged me. He wasn’t sick any more,” Andrew
says.

Now, when he prays at the end of the day, Andrew talks to his big brother
in heaven. Mom isn’t allowed to listen.

He says they just talk about stuff. Boy stuff.

Sometimes, Shelley Liva pictures Justin all grown up. He’s smoking a cigar.
He’s just returned from a big business meeting.

He’s successful, she thinks. He’s happy.
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