A child's losing battle

A short life is spent fighting cancer, inspiring adults.

Published February 16, 2005

Nine-year-old Kyle Austin Cobb never knew life without cancer.

Diagnosed with leukemia when he was 3, doctors gave him a better than 80 percent chance of beating it. That was before years of chemotherapy and radiation ravaged his body and sapped his strength. He had two bone marrow transplants.

Late last month, as his family members put their hands over his heart, he quietly slipped away.

Yet even in such a short life, he had touched the lives of so many others with a mature strength that nurses see in young cancer patients.

"They know before anyone else that they're not going to be around," said Nancy Melley, one of Kyle's nurses at All Children's Hospital.

"These little kids act like they're in their 20s. They know they have to live as much life as they can quickly."

He would have turned 10 last week.

Those who knew Kyle best hope that the little boy who loved dinosaurs, Star Wars and anything connected to the military will continue to live through their memories.

"He would have been a good contribution to this world," the nurse said, "if he had been allowed to grow up."

* * *

Mary-Ellen Davis and Kelvin Cobb married in 1992, three years after meeting at a Clearwater gas station. They bought a three-bedroom, concrete block house in Pinellas Park and set their sights on raising a family.

Their first child, Kyle, was born in February 1995. Their daughter, Karissa, was born in June 1998. Two months later, their world turned upside down. Kyle, who always had been healthy, started complaining of stomachaches. He had frequent nosebleeds. His lips were dry and cracked. Bruises appeared at the slightest touch.

One afternoon, on a family outing, Kyle asked his father to carry him because his legs hurt. The couple decided to get him checked out at All Children's Hospital.

"Within 30 minutes, they informed us he had cancer," Kelvin recalled in an interview last week.

The doctors at All Children's told them Kyle's white blood count was high enough for the cells to split his bones in half from the inside. They devised an aggressive two-year plan to combat the cancer.

The doctors managed to coax Kyle's cancer into remission within the first month, but the treatments continued. He lost all his hair. He often was too sick to eat. A common cold meant a hospital stay. Still, as he neared the second anniversary of his diagnosis, he was able to go to day care, and Mary-Ellen was able to return to her job.

July 13, 2000, Kyle relapsed. A routine spinal tap revealed that the cancer cells were back.

The doctors explained that Kyle's relapse meant his chances for recovery were worse. They also decided to follow a more aggressive treatment plan, which included brain and spinal column radiation in addition to chemotherapy.

Kyle's skin was tattooed so the technicians would know where to direct the radiation. He had to wear a wire mesh mask, contoured to the shape of his head, which was bolted down so he couldn't move during the half-hour treatments.

While the chemotherapy robbed him once again of his hair, the radiation destroyed his thyroid and made him sterile, Kelvin said.

* * *

Mary-Ellen and Kelvin learned as much as they could about Kyle's illness. They documented each doctor's visit, each procedure that Kyle endured, in a three-ring binder. They came to realize that cancer wasn't something that happened just to adults.

"A lot of people don't know the world of children with cancer," Kelvin said. "The hospitals are full of them. There are children in isolation in every hospital in every town."

In August 2001, while Kyle was still undergoing treatments, he entered first grade at Sacred Heart Catholic School in Pinellas Park. Mary-Ellen and Kelvin chose it because it was a small school where Kyle would be exposed to fewer germs.

They were nervous about how the other kids would respond to Kyle. He was bald, and he had no eyebrows or eyelashes. When they met with the principal, she asked if they wanted Kyle's teacher to tell the other children about Kyle's illness.

"We said absolutely," Kelvin said. "The one thing kids fear the most is what they don't know. We didn't want them to be scared of Kyle."

"Very few arguments transpired in Kyle's classroom," said Penelope Howell, the principal. "The children quickly learned we need to be careful of the people around us."

Kyle finished his second two-year treatment regimen in July 2002 and began second grade at Sacred Heart the next month. Two weeks before Thanksgiving, he relapsed again.

Kyle's doctor, who was never pessimistic before, "was telling us that Kyle was most likely going to die," Kelvin said.

Miraculously, Kyle was in remission by January. The doctors started discussing a bone marrow transplant. But first, they had to wipe out the existing bone marrow with chemotherapy and radiation.

An anonymous donor was located, and Kyle received the transplant on April 8, 2003. It changed his blood type from the one he was born with to his donor's and left him without antibodies to ward off infection.

Unable to return to Sacred Heart, he became a student in Pinellas County schools' hospital homebound program. His teacher, Tamyra Baker, came to visit him twice a week, either at home or at the hospital. He finished second grade on the honor roll.

"He was such a courageous and brave little man," Mrs. Baker said. "He'd be so ill and not feeling well, but unless he was sound asleep, he always wanted me to stay. He'd want to work. At the end of the year, he would always pass all his tests. He just kept pushing on, pushing forward all the time."

Kyle's hair grew back, and his life became relatively normal. He was unable to eat the bologna sandwiches he loved because processed meats could trigger an infection. He wasn't allowed to bait his own hook when he and Kelvin went fishing at Fort de Soto. He had to continue to stay away from crowds and guard against germs.

While there were many happy times - trips to Busch Gardens and SeaWorld and Devil Rays games - the thought of a relapse was never far from their minds, Kelvin said.

"We pretty much lived each day as if it would be the last," he said. "We didn't postpone things until tomorrow."

Still, Mary-Ellen and Kelvin dared to hope. Coming up on the one-year anniversary of the transplant, all of Kyle's tests were normal.

"We hadn't seen that for a long time," Kelvin said. "I actually made the mistake of thinking that we had gotten it this time."

April 8, one year to the day of Kyle's transplant, the doctors told Mary-Ellen and Kelvin the cancer had returned. This time, the doctors could only offer a 10 to 20 percent chance of survival.

"Your kid looks up to you," Mary-Ellen said. "You have to have a positive outlook if you want your kid to have a positive outlook."

The doctors told them Kyle's options were limited.

"The question of quality of life came up - whether we should continue treatments or stop," Kelvin said.

* * *

A flurry of e-mails went out to pediatric oncology programs to see if any of them could give Kyle a second transplant. Duke University Medical Center responded. June 2, Kyle was invited to come for a week of testing.

The couple decided that Mary-Ellen would stay with Kyle. Kelvin would spend most of his time in North Carolina, returning home when necessary to attend to his electrical company. Before the end of January, he would make 15 round trips.

Kyle checked into his hospital room June 27. He got his first round of chemo to destroy his old bone marrow at 4 a.m. the next day. He had his second bone marrow transplant on July 6 and spent seven weeks in the hospital.

As he walked down the hallway to the pediatric unit's only exit Aug. 24, nurses and patients showered him with confetti, a Duke tradition when a child leaves the hospital. He started visiting the clinic as an outpatient, and the family's life assumed a pattern of sorts.

Kyle moved into an apartment Mary-Ellen and Kelvin had rented close to the hospital. Kelvin brought Karissa up as often as possible. When he left her at home, Mary-Ellen's parents took care of her.

On good days, Mary-Ellen and Kyle explored the Duke University forest. Kyle had to wear a surgical mask and long-sleeved shirts to protect him from mosquitoes. Often, they saw deer. One day they spied an owl. When Karissa came to visit, Kyle took her for walks in the woods. His spirits always lifted when his little sister arrived, Mary-Ellen said.

In October, Kyle contracted a virus. About a week before Thanksgiving, a CAT scan showed tiny spots on his lungs and a couple on his kidneys. He was readmitted to the hospital where he received heavy duty antibiotics.

He was given a pass to return to the apartment for what was to be his last Thanksgiving dinner but was admitted to the pediatric intensive care unit in early December with a serious lung infection. The membrane around his heart filled with fluid, and the doctors had to insert a catheter to drain it.

The doctors decided to put Kyle on a ventilator. Mary-Ellen called Kelvin at 6 on the morning the machine was moved into Kyle's room.

"I told him I loved him," Kelvin said. "He said, "I love you, Dad.' Those were the last words I heard from him."

Kyle lapsed into a medically induced slumber.

Christmas Eve, the doctors took a lung biopsy that showed the air sacs on the ends of Kyle's bronchial branches were severely damaged. Then, a few days after New Year's, Kyle developed an irregular heartbeat.

For a couple of weeks, Kyle hovered in a semiconscious state, communicating with Mary-Ellen and Kelvin by squeezing their hands.

Jan. 22, Mary-Ellen added the following lines to the online journal she had begun in June to keep friends and family members informed of Kyle's condition:

"Why do I keep up the fight for Kyle? Before Kyle had to go to (the intensive care unit), with tears running down his cheeks, Kyle told Kelvin and I that he didn't want to die. There was still too much he wanted to do."

* * *

On the morning of Jan. 25, Kyle's nurse told Mary-Ellen and Kelvin that Kyle's eyes were moving under his closed lids. Kelvin went in to see him. Kyle opened his eyes halfway and tried to focus.

"It was almost like he was telling Daddy goodbye," Kelvin said.

Kelvin had to fly home Jan. 27 to prepare three weeks of payroll for his employees. Kyle's doctor called him that night and asked him to come back. Kyle had taken a turn for the worse.

Kelvin arrived at the hospital around 2 p.m. the next day with Karissa and Mary-Ellen's mother. As he looked down at Kyle, so small and pale in his hospital bed, he made a decision.

"The thought occurred to me that I should go get his clothes for him so he would die with dignity," Kelvin said. "I went back to the (apartment) and got his little Army greens he liked wearing."

With Mary-Ellen's help, he dressed Kyle and placed his toys around him. They switched on one of Kyle's favorite songs and drew near his bed. Then they nodded to the respiratory therapist to turn off the ventilator.

"I told him I loved him with all my heart," Mary-Ellen said. "I told him it was time to go home to heaven. I told him, "You don't have to worry about being alone. Some of your friends from the hospital will be there with you.' "

"We had our hands on his heart," Kelvin said. "We were saying, "I love you' in his ear when we saw the machine flat line."

* * *

Calvary Baptist Church in Clearwater was filled to capacity Feb. 5, the day of Kyle's funeral. A table at the back of the church held the reminders of a little boy's short life: a large three-ring binder filled with medication lists, temperature charts and platelet counts, an ID badge from Duke University Medical Center, a "Transplant Day" certificate.

Five photo albums showed Kyle in better days, playing "Army man" at the North Carolina apartment, celebrating Karissa's sixth birthday, and preparing to go fishing with his dad.

The albums also contained images that would make any parent cringe: Kyle being fed into a bone scan machine, Kyle strapped to a table receiving radiation, Kyle in a hospital bed connected to a tangle of surgical lines.

Extremely detailed colored-pencil drawings, mostly of dinosaurs and fish, were in a pile on the table. Another table held a half-dozen Lego models of planes and submarines that Kyle had built, a wooden model of a dinosaur skeleton and a science project on asteroids.

At the front of the church, surrounded by floral baskets, was a small white satin-lined casket. Kyle's body lay inside, dressed in an Army camouflage outfit.

At 11 a.m., the Rev. Willie Rice began the service. First Kelvin, then Mary-Ellen spoke. Longtime family friend George Morris talked about the day just before Kyle left for Duke when he was baptized in his grandfather's bathtub. Kelly Walker, Mary-Ellen's best friend and Kyle's godmother, recalled meeting Kyle for the first time when he was 3 weeks old.

"He had the most soulful eyes," she said. "He was such an old soul. He seemed to know things children don't have a right to know."

At the conclusion of the ceremony, a phone voice-mail message Kyle had recorded was played. It was the same recording that had comforted Mary-Ellen after Kyle had been placed on the ventilator and could no longer talk to her.

Everyone went outside and watched as Karissa released a white dove from its cage and listened to a bagpiper play Amazing Grace . The dove headed east toward the hearse waiting in the church driveway, then turned south and flew away along Osceola Avenue.

* * *

Despite Kyle's passing, his family decided to celebrate what would have been his 10th birthday Feb. 8. Mary-Ellen and Karissa baked a cake. Karissa blew out the candles. Mary-Ellen and Kelvin allowed her to open Kyle's Christmas presents, still in their holiday wrapping paper.

Mary-Ellen put messages inside seven helium-filled balloons, asking whoever finds them to return them to the family's address. After dinner, she and Kelvin and Karissa went outside and looked up at the stars.

They released the balloons and wished Kyle a happy birthday in heaven.

How to help

Kyle Cobb's medical bills for the six years he battled cancer ran into the millions of dollars. Not all of the expenses were covered by insurance. The Kyle Cobb Transplant and Family Assistance Fund has been established through Bank of America to help the family. Contact Kyle's grandmother, Marion Davis, 536-3268, for information.