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A little girl, a lethal tumor

Luis Fábregas
| Sunday, Aug. 27, 2000
Hannah Kunkel and her father, Paul, arrive for her first day of kindergarten, August 29, 2000.
Hannah Kunkel and her father, Paul, arrive for her first day of kindergarten, August 29, 2000.

It's 4 a.m. Hannah Kunkel is lying on her parents' bed crying. Her head is pounding. She can't sleep.

Something is wrong. Hannah, still in her "Rugrats" pajamas, taps her mother's shoulder to wake her.

"Mommy, call me an ambulance."

Barb Kunkel prays the headache will go away. It doesn't. A few hours later, she rushes Hannah to her pediatrician.

Hannah's diagnosis will test and try the Bellevue family, which also includes two other daughters. Their lives will be complicated by issues of timing, courage and mortality. They will face terrors they never thought their family would encounter.

How, after all, do they tell a 5-year-old she's going to die?

"If somebody has an answer to that, please let me know," Paul Kunkel said.

The Kunkels hope sharing their ordeal will help others under similar circumstances. So they've agreed to let the Pittsburgh Tribune-Review tell Hannah's story.

"We have a lot of denial, but I have this hope in my heart," Paul said. "I just want that day beyond six months to come so I can tell the doctors they were wrong."


The Kunkels had never considered a tumor. The telltale signs were masked. In mid-March, Hannah had occasional bouts of vomiting after she ate. The Kunkels blamed it on the flu.

"She would throw up and then would go out to play," Barb said. "It didn't happen all the time."

Then came the headaches. Sometimes daily. Over-the-counter medicine didn't work.

"My assumption pretty much was that she needed glasses," Paul said. "My mother wears them; (Hannah's sister) Katie wears them; a lot of us wear them."

Such a reaction is common, experts said. Most physicians would treat Hannah's initial symptoms as part of a sinus or stomach infection, said Dr. A. Leland Albright, chief of pediatric neurosurgery at Children's Hospital of Pittsburgh in Oakland.

"Doctors see sinus and stomach symptoms day in and day out," Albright said. "You don't think 'brain tumor.'"

On April 16, when Hannah woke up in the middle of the night sobbing, Barb figured it had to be something serious. She panicked but didn't call an ambulance. That would seem silly, she thought.

"If I called an ambulance and said, 'Hey, my daughter has a headache,' can you imagine their reaction?" she said.

Instead, Barb drove to Dr. David Hennessey's office in Sewickley later that morning. The pediatrician ordered a battery of tests.

The diagnosis: Hannah had a rare tumor in the lining of her brain. And it was spreading quickly.

A few days later, on Good Friday, doctors told Barb and Paul Kunkel that Hannah, 5, likely had only six months to live.

"It was like, OK, you ripped out my heart, now rip out my guts, too," Paul said.


The Kunkels, both 41, have told their other daughters - Katie, 13, and Collyn, 8 - that Hannah has a brain tumor.

"Tough times lie ahead," the parents have told the girls.

The Kunkels' philosophy has always been to tell their children the truth. They don't want them to find it out some other way.

Hannah knows she has a tumor. But the word "cancer" terrifies her because that's what killed her Aunt Libby.

Her relatives never use that word in front of Hannah. The "C-word," they say.

"How could you talk about cancer to a 5-year-old?" Paul said. "She hasn't even started kindergarten."

Katie, who starts eighth grade on Monday, said her sister's illness has filled her life with confusion.

"You have to wonder why God would take her," Katie said. "But there's a reason for everything."

The girls witnessed their mother's reaction after she learned the diagnosis.

"I lost it. I was hysterical, crying," Barb Kunkel recalled.

She had just quit her two-pack-a-day smoking habit a week before, in part to control her blood pressure. She jumped in her car, ripped a nicotine patch off her upper arm and lit a cigarette. She's still smoking.

Barb is haunted by a comment she made a few hours earlier. When a doctor ordered a brain scan, Barb told him, "God forbid it's a brain tumor."


Hannah's tumor - called a leptomeningeal sarcoma with rhabdomyoblastic features - is among the most infrequent childhood cancers.

Experts at St. Jude Children's Research Hospital in Memphis, Tenn., estimate that the cure rate for childhood cancer is approaching 80 percent. Those are promising odds for the one in 350 Americans who will develop cancer before the age of 20.

But Hannah's tumor is different. Traditional cancer-killing methods are nearly useless. Chemotherapy and radiation offer only a speckle of hope.

After giving the assessment of Hannah's initial brain scan, the doctor told Barb Kunkel to go to Children's Hospital immediately.

"I remember the doctor telling us, 'Of course, you've noticed she's lost balance,'" Paul said. "No, we haven't. 'Well, of course her speech is gone,' he said. I don't think so.

"The only thing we've noticed is that she's using really big words, like 'This is extraordinary, Dad.' I think it's because she sees her older sisters and she picks up on it."

Children's immediately admitted Hannah. Within days she became lethargic. Her face drooped. She was rushed to the operating room. In a four-hour surgery that required two blood transfusions, doctors removed 95 percent of the tumor.

Albright, who led the surgical team, sliced away a square piece of Hannah's skull and through it removed part of the brain's smooth lining, which is about as thick as a bedsheet. Through the hole in Hannah's skull, he took out as much tumor as he could see under the operating microscope.

Hannah bounced back. Doctors discharged her, and the Kunkels were ecstatic. But tumors that arise from the lining of the brain are aggressive. They grow back. By July, the tumor was expanding so rapidly that it outgrew its blood supply, said Dr. Regina Jakacki, director of the pediatric neuro-oncology program at Children's.

The wound on Hannah's head began to bleed. For the second time, surgeons launched an attack on her foe.

The operation was fruitless. The brain had swelled so much that it bulged out of Hannah's skull. She was bleeding so badly that the procedure could not be finished. The doctors held their breath and, not without a struggle, pushed the brain back inside the skull. They gave Hannah a steroid called Decadron to stop the swelling. And they prayed.

"They didn't know if she was going to live or die by the time they closed her up," Jakacki said.

Hannah didn't wake up for two days. She suffered a stroke from the bleeding, which compressed the blood vessels and in turn decreased the flow of oxygen to parts of the brain that control movement. Hannah was temporarily paralyzed on the right side. Her speech was slurred.


The Kunkels have taken heat from friends and relatives because of their choices about Hannah's treatment.

After the first surgery, the Kunkels purposely put off further treatment for months. Chemotherapy, if successful, would nudge Hannah's chances of survival from 0.1 percent to only 1.1 percent, doctors said.

"We'd rather spend quality time with her," Barb said. "I didn't want to see her sick and not be able to eat. You know the horror stories about chemo."

Paul's words brim with directness.

"She's a child, she's a kid, and I'm not going to put her in a glass bubble," he said. "A lot of people expected us to do that. But you know what• I want her to go outside and play. I don't want to think about what she's going through every second of the day. You can't do that; you become a prisoner."

The Kunkels chose the road not taken by most parents of terminally ill children. Instead of putting Hannah through treatments that might have no effect on her tumor, they let her enjoy what could be her last summer. No chemotherapy. No radiation.

In June, Barb drove her daughters to Ocean City, Md. Paul stayed behind to work. Hannah, who loves to swim, frolicked in the water and got her scab wet, defying doctors' orders. A few weeks later, Paul took the girls to Niagara Falls. The family capped the summer with a trip to the Pittsburgh Zoo & Aquarium. Hannah played with the elephants, timidly touching their trunks and then pulling back her hand.

When they weren't on vacation, Paul took Hannah with him to his job at a gas station on Babcock Boulevard in Ross Township. Hannah brought coloring books and Lego blocks. She ate cinnamon bagels from the shelves.

The Kunkels are not halting plans for Hannah to start all-day kindergarten. Tomorrow is her first day at Assumption School in Bellevue.

"I don't want to lose sight of that date," Barb said. "When we found out, it was like, 'Oh my God. My child is never going to start kindergarten.' Believe me, if she's here the 28th of August, she'll go."

If anyone can calm the strained nerves of the Kunkels, it is Hannah.

She giggles constantly. She belts out Britney Spears' "Oops, I Did It Again." She loves to play with Barbie dolls. She paints her fingernails bright red. She says Tommy from the "Rugrats" cartoon is adorable.


When they married in 1982, Paul and Barb had planned to have only two children. They had just shut down a restaurant they owned in Sewickley when Barb found out she was pregnant a third time. Money was tight. Hannah was a surprise.

"I cried for a month, I was so upset," Barb said.

Hannah Elizabeth was born on Dec. 28, 1994.

Sister Katie calls her spunky. Sometimes there's a hint of mischievousness in Hannah's brown eyes. She got into trouble in May when she left the house - without telling anyone - to play in a neighbor's back yard.

"We couldn't find her anywhere," Katie said. "We were just about to call the police when she finally appeared."

Hannah wants to have five children - enough to do the chores around the house, she said.

"I want to be a nurse," she declared recently when her mother asked what she wants to be when she grows up.

Hannah's parents have told her she is very sick. Ask her to show you the boo-boo on her head and she complies with pride, as if she's showing off a new toy. She guides your hand to touch the scabby scar that snakes across her head.

On her worst days, Hannah is on guard. Her eyes move constantly, scrutinizing those around her. But she can become distracted in a matter of seconds, oblivious to conversations a few feet away. When "Rugrats" is on television, you might as well forget it.


On a recent Sunday afternoon, Hannah and her mother rested on the blue couch in the family's living room. A few feet away, Paul worked at the computer.

"You know, Mommy," Hannah whispered, "I hope that I die before you."

Barb, stunned, asked Hannah what made her say that.

"Because if you died first," Hannah said, "I wouldn't be able to live without you."

Nonsense, Barb told Hannah, that's not the way it's supposed to happen. Mommies and daddies are supposed to die before their children.

"Well, I'll make you a deal," Hannah said. "We can die together, and we can hold hands and go up there together."

For Barb and Paul Kunkel, their daughter's words are curious.

"You wonder," Barb said, "if down deep inside she knows what's going on."

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