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                      Fighting for Daniel

Slumped down in an easy chair, Daniel Vanderklok murmured, “My head hurts.” The
11-year old reached for a glass of water with his left hand-and his fingers went
limp. “Mommy, I can’t move my hand!” he said.

Vicki Vanderklok watched with alarm as her normally cheerful, happy son struggled
to wiggle his fingers. Within moments, she was on the phone with Barry Kitts, the
family doctor. “Bring him in right away,” he said. By the time they arrived at the
office, Daniel’s left arm was tingling, and he was dragging his left leg. After as
series of tests. Dr. Kitts pulled Vicki aside. “I want you to take Daniel to the
hospital for a CAT scan as soon as possible.”

Forty-eight hours later, on a cold gray day in December 1996, Tom and Vicki
Vanderklok sat in a ninth-floor conference room at Devos Children’s hospital in
Grand Rapids, Mich., trying to take in the grim news. Their only child had not one
but *two* brain tumors one of which was in his brain stem, an especially hazardous
place in which to operate.  The Vanderkloks were told that without surgery, Daniel
might have only a few weeks to live. Yet if Daniel did have surgery, he had a very
small chance of surviving the operation. If he made it through, he would most
certainly end up a quadriplegic, dependent on a ventilator to breathe. Presented
with such desperate news, Vicki was firm. “I want my son to live.  I don’t care
what condition he’s in. We’ll take care of him.

Tom and Vicki, both 39, couldn’t believe what was happening.  At Kent City
Elementary School, 30 miles north of Grand Rapids, their son had been one of the
fastest runners in his class, as well as one of the brightest students. Now the
sandy-haired, blue-eyed youngster lay in a hospital bed, terrified and silent, unable
to move his left arm, hand or leg. The only clue to Daniel’s inner torment was the
way he clung to “Puppy,” a floppy eared stuffed dog he treasured as a good-luck
charm. “There must be a doctor somewhere who can help us,” Tom said, his voice

Liza Squires, the medical center’s pediatric neurologist, thought of one who might.
“I know a neurosurgeon in New York City,” she said softly. “His name is Fred
Epstein. He’s the best there is. I’ll contact him.”
Squires had trained under Epstein, who is now director of Institute of Neurology
and Neurosurgery at New York’s Beth Israel Medical Center. Among the world’s most
accomplished pediatric neurosurgeons, Epstein was the first to operate successfully
on spinal-cord tumors and venture into the brain stem. He was also known for his
caring, down-to-earth approach and deep respect for his patients and their
families. “Many physicians gave me excellent technical training,” Squires had told
friends, “but Fred Epstein taught me how to be a doctor.”

Squires phoned Epstein at his vacation home in Florida. “I’d like to see Daniel’s
brain scans and other test results, “ he said. “ Would you air-express them?”

Epstein reviewed the brain scans and quickly called the Vanderkloks. They agreed to
bring Daniel to New York. Meanwhile, growing pressure on the breathing center of
Daniel’s brain stem had caused occasional hiccups to become nearly nonstop. And
now he was suffering tingling on his *right* side. Increasingly frightened, the boy
looked squarely into his mother’s eyes and asked, “Am I going to die?”

Vicki hugged him close. “Daniel,” she said, ‘we’re going to New York so you wouldn’t

A tall slender man wearing a blue suit and cowboy boots entered the office at Beth
Israel. “Hi,” he said, extending his hand to Daniel,”I’m Fred Epstein.” Weakly the
boy shook hands with him. The surgeon then reached out to Tom and Vicki. “Please
call me Fred,” he said gently. “We’re all in this together.”

Daniel’s hiccups were now so out of control that he simply had trouble drawing a
full breath. Epstein knew that tumor pressure within the boy’s brain stem had
reached a more dangerous level.

“Do you have any questions about the surgery?” he asked Daniel.
“Can I keep the Puppy with me?”
“Absolutely,” Epstein said.
“Do you have to shave my head?”
Epstein smiled. Children dealing with serious illness were often braver than many
adults; yet kids usually worried more about their appearance. “I promise I’ll take a
little hair off the back,” Epstein said. “You won’t even notice.”
Daniel seemed to relax.
“We also play any kind of music you like in the operating room,”Epstein added.
“Is there something special you want?”
“The Lion King,” Daniel said.
“You got it.”

Out of the boy’s earshot, Epstein explained that Daniel’s tumors should be removed
in two separate operations. The larger, more dangerous tumor was three inches long
and had snaked down from the base of the brain stem into the spinal cord. He
would remove this one first. “I think that’s the safest way to go.”

Early on the morning of January 9, 1997, with music from The Lion King playing
over the loudspeakers, Vicki and Tom entered thee operating room at Daniel’s side.
They all three held hands.

“Mommy, I’m scared,” Daniel said. Vicki kissed her son’s forehead.
“We’ll be right near you,” she said.
In a few minutes Daniel was under anesthesia, clutching Puppy.

After Tom and Vicki went to the waiting room, two nurses rolled Daniel onto his
stomach and positioned his head in a headrest. Next, a small patch of hair from
the back of the boy’s head - the area directly over the junction of the spinal cord
and the brain stem - was shaved off.

Dr. Vedran Deletis, a neurophysiologist, attached electrodes to Daniel’s scalp, spine
arms and legs. During surgery they would monitor nerve-impulse transmissions from
the boy’s brain to his spinal cord and out to his limbs. If the readings dropped
more than 40 percent, Daniel would be in imminent danger of permanent paralysis.  
After a final check of his instruments, Deletis looked up at the surgical team.
“We’re ready,” he said.

A surgical assistant drilled four small holes into the back of Daniel’s head; then,
with a surgical saw, he cut from hole to hole and removed a three-inch section of
bone. Next he opened the dura, the tough, grey membrane covering the brain. He
cut farther down Daniel’s neck, exposing the upper part of his spinal cord where it
joined the brains stem.

Peering into his operating microscope, Epstein saw the reddish-gray tumor in the
brain stem, which pulled like a miniature heart, “This tumor is massive,” he said.
“It’s almost double the size of the upper spinal cord.
Daniel’s growth was a cavernoma, a nest of abnormal blood vessels that eventually
wear down and hemorrhage.  Epstein saw that the tangle of worm-like structures
was almost black from the dried residue of bleeding.

To destroy the tumor’s vessels, he would have to cut and pull them out one by one.
But if he cut too much or exerted too much pressure inside the cord, he could
destroy its ability to transmit nerve impulses. Daniel would be permanently paralyzed
from the neck down. The trick was to find where the tumor ended and the healthy
cord tissue began. Right now it all appeared to be a dark, undefined mess. Even the
high-resolution scans couldn’t provide clear distinction.

Epstein picked up a microscalpel. “Okay, here we go.” Painstakingly he advanced
millimeter by millimeter. After cutting into what appeared to be the tumor’s center,
he used an electrified, tweezer like instrument called a microcautery to pinch off
and seal the cavernoma’s bleeding vessels. Stopping the bleeding gave him a clear
operating field. Now slowly, he pulled the severed vessels from the heart of the
Epstein continued cutting up from the spinal cord to the lower brain stem. The O.R.
grew quiet. Everyone could sense Epstein’s intense concentration. No matter how
many times he operated in this part of the brain, it was never routine. There was
no margin for error.
“We still okay?” Epstein asked Deletis.
“He’s down 30 percent.”
The surgery was now exerting more pressure on Daniel’s motor pathways, which
weren’t conducting nerve impulses as efficiently as before.
“He’s down 40 percent,”  Deletis announced.
“Oh, God,” Epstein said. He stopped cutting and took a deep breath.  He was on
very dangerous ground. In the past, he had even halted the surgery, rethought the
procedure and resumed the next day.
“There’s a little tumor left,” Epstein told Deletis. “I’ve got to go after it.”

Deletis kept a tight watch on his instruments. As Epstein moved cautiously ahead,
the wave held steady at 40 percent below the base line.

Methodically he cut and cauterized each tiny vessel of the tumor. Then, piece by
piece, he plucked and suctioned out the remaining fragments. As he did, the clear
healthy tissue of the lower brain stem emerged fully. The tumor that had
threatened Daniel’s life was gone.

Anxiously Epstein glanced at Deletis.
“He’ll be Okay,” Deletis said.

Elation swept through the O.R.

“Let’s put Puppy back so Daniel will find him when he waked up,” Epstein said.  
Smiling, a nurse placed the stuffed animal on the boy’s chest. Finally, more than
six hours after the surgery had begun, Daniel was wheeled  into the ICU.

A short time later Tom and Vicki hovered over their son’s bed. Slowly opening his
eyes, Daniel looked up at his eager parents. “Is my head shaved?” he asked.

Daniel’s brain was fine. “You’ve got all your hair,” Tom assured him. “You look
great!” Satisfied, Daniel drifted back to sleep.

Five days later Epstein successfully removed the second tumor.

“He’ll be good for a hundred years,” Epstein assured the Vanderkloks.
“He’ll be pushing you around in wheelchairs.”

( Daniel went on to complete the sixth grade with honors. Although he has some
weakness in his left arm and leg, he still enjoys running.)

-  John Pekkanen