FIRST OF TWO PARTS
Editor's Note: This story was reported through interviews with Glenda Murray, Katelynn Murray, Cathy Neel and Dr. Shalini Shenoy, a pediatric oncologist at Children's Hospital in St. Louis. Children's Hospital denied the Southeast Missourian's requests to interview Dr. Jeff Bernowski. Writer Bob Miller's father serves on the ministerial alliance in Doniphan, the organization through which the house project began.
DONIPHAN, Mo. -- Pounding.
Straddling a tiny chest and pounding. Bruising the fragile skin with fists. Fighting to save a life. No time now for machines. Just pounding. One minute, two minutes. Silent pulse. But the pounding goes on. Five minutes. Ten minutes. Silent pulse. Twenty minutes. Thirty minutes. Still no pulse; not one strong enough to maintain life anyway.
But every so often, the little girl with huge, doelike eyes snaps up from the hospital bed and gasps, "Don't let me go. I want to live." The silent heart tells Dr. Jeff Bernowski this girl's body is dead. But her spirit says not yet. And so his pounding continues. Forty minutes. Fifty minutes.
Pounding.
The hammers in the Sunny Acres subdivision, now pounding in the first nails, break the silence on this scorching Sunday afternoon. A handful of men, gathered around a concrete foundation, are bending a Biblical code handed down from Moses.
Remember the Sabbath; keep it holy.
This work, even on the Sabbath, qualifies. Two local pastors, watching the progress, cannot argue the point.
A few feet away, Katelynn Murray sees the walls and windows chalked out on the concrete. Two large banner signs at the edge of the property proclaim, "Tiffani's Miracle Makeover."
To 16-year-old Katelynn, her little sister is most certainly a miracle. The house, too, is a miracle, but one that the Doniphan teen can't quite comprehend yet. Not after the last two years.
She can keep the quiver out of her voice for most of the story, even find small reasons to smile as she shares her memories.
But Katelynn struggles when it comes to the pounding; when it comes to talking about the day her little sister died.
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Ask anyone in this small Southeast Missouri town to describe Tiffani Murray and you'll nearly always start and end at the same place: her smile. Even on the day she found out she had cancer, the then-10-year-old found joy.
The red bumps on Tiffani's neck had doctors in Doniphan and Poplar Bluff, Mo., stumped. The bumps eventually appeared under her armpits as well; one on her neck grew to be as large as a baseball. Test after test and finally the doctors got their answer. They wouldn't give Glenda, Tiffani's mom, the results over the phone. She drove to the hospital in Poplar Bluff on June 16, 2005, Tiffani and her best friend, Micah Smith, in tow.
Non-Hodgkins lymphoma.
The reality hit Glenda hard.
Micah cried.
Katelynn was devastated.
Tiffani did cartwheels and said, "I'm in God's hands. I know nothing bad will happen."
For a year, the single mom drove to St. Louis with her daughter every three weeks for chemotherapy.
Tiffani lost her hair; she lost much of her strength; she didn't lose her smile.
She missed cheerleading tryouts -- something she'd longed to do for many years. Someone donated a uniform; she cheered whenever she was up to attending basketball games. The public school held fund-raiser after fund-raiser to help with medical costs. Glenda was forced to quit her job of seven years at a local bank. The family's trailer, set on a rented pad, became cramped from all the medical equipment. But the three girls battled through.
And finally, in June 2006 -- about one year after the cancer was first diagnosed -- the family learned that Tiffani was cancer free.
Their joy was short-lived.
A few weeks later, during a routine PET scan, doctors discovered one small cell had been missed during chemo treatment. And it was ravaging the 11-year-old's body with forest-firelike magnitude. Nearly unstoppable. Too quickly, the doctors at Children's Hospital in St. Louis ran out of treatment options. The only choice left was a bone-marrow transplant.
Even this proved difficult for Tiffani, who has a rare type of tissue in her marrow that eliminated all of her family members as potential donors. Eventually, a donor from another country was found. Tiffani was scheduled for the transplant Jan. 13, 2007.
The Make-A-Wish Foundation offered to send Tiffani on a trip before the transplant. She could have chosen just about anywhere. Disney World. The beach. She asked to visit her stepsister in Colorado. They spent the time in Estes Park, playing in the snow. Tiffani wasn't sick a day during the entire trip.
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Joy Bubble.
A nickname that came naturally to a little girl with an effervescent personality. Joy. It's literally her middle name.
The last year and a half had been tough; the bone marrow transplant was the worst yet. During the hardest part, Glenda turned off the lights in the hospital room and played Nicole Mullen's "My Redeemer Lives" softly in the background.
The very same God
that spins things in orbit
runs to the weary, the worn and the weak
and the same gentle hands that hold me when I'm broken
they conquered death to bring me victory
Now I know, my redeemer lives.
A few weeks after the transplant, when she was taken off life support, Tiffani came out of the intensive care unit softly singing the song.
The transplant was a success. Afterward, Tiffani was required to stay at the Ronald McDonald House in St. Louis for 100 days. She and Glenda moved in Jan. 30, on the third floor of the building. There was no elevator; the trip up taxed both of them. The next day -- a Wednesday -- Tiffani began coughing and running a fever. Glenda took her to the hospital; finding nothing wrong, doctors sent her back to Ronald McDonald House. That night, the little girl complained of her heart hurting. Her coughing worsened.
She told her mom the cancer was pressing against her heart.
"Don't say that," Glenda Murray told her daughter. "The cancer's gone."
But Tiffani's condition worsened. She vomited up her medicine. The coughing was more severe. Her backache became unbearable. By 8 a.m. the next morning, Glenda had decided to take Tiffani back to the hospital. They started down the three flights of steps, but on the first step, Tiffani sat down and told her mom she couldn't breathe. Glenda called an ambulance.
By the time they got to the emergency room, Tiffani was screaming, "It's a 15! It's a 15!"
Her pain was beyond the usual scale of 1 to 10 the hospital uses to judge pain level.
Dr. Jeff Bernowski escorted Glenda from the hospital room Tiffani was in, into a nearby office. It was one of the few times she'd ever left her daughter's side. She waited there with the hospital's bone marrow coordinator for about six hours.
Around 2 p.m., she was finally allowed to see Tiffani in ICU, where the girl had been placed on life support.
Walking into the room, Glenda's first thought was, My God, what happened to my baby?
With more cords and tubes running through her than Glenda had ever seen, Tiffani was motionless in the hospital bed. The back of her head and her chest were badly bruised, black and blue and more.
Glenda asked aloud what happened, and the doctor in the room told her, "That's where Dr. Bernowski beat her to save her life. That's how they did CPR."
For 58 minutes, Dr. Bernowski manually operated Tiffani's heart for her. Each time he stopped pounding with his fists, her heart stopped beating. And so he would start again, ensuring enough blood circulated to get some oxygen to her brain. But it wasn't enough oxygen. Her brain was damaged.
~Read Part 2 of Tiffani's story in Thursday's Southeast Missourian.
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Childhood non-Hodgkin's lymphoma is a disease in which malignant cancer cells form in the lymph system.
According to the National Cancer institute, about 15 percent of childhood malignancies are lymphomas, making them the third most frequent type of cancer in children following leukemia and malignant brain tumors. The non-Hodgkin's variety -- known as NHL -- is more common in younger children. About 1,700 children in the United States are diagnosed each year with some form of lymphoma.
cmiller@semissourian.com
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