A lesson before dying

A teen leaves behind a cancer-fighting foundation and a manual on how to treat the terminally ill

OnJan. 12, 2010, Carson Leslie was in hospice care, practicing his signature.

Six days earlier, the 17-year-old had published a book, “Carry Me,” chronicling his experience with cancer, and he was preparing to greet admiriers at his book signing in a few days.

At 3 a.m., after receiving an emergency blood transfusion at the hospital, Carson sat in the family room of his Preston Hollow home with his parents, Craig and Annette, and his older brother, “Craig T.” They were laughing at an episode of “Family Guy” on TV.

Annette left the room to take out her contact lenses, but Carson stopped her and said, “Mama, come sit next to me.” Annette replied that she’d be right back, but he insisted. Annette sat down on the sofa next to her son, whom she had watched wither before her eyes during three years of painful radiation and chemotherapy that proved unsuccessful. She fed him a pill and a small piece of bread.

Moments later Carson lowered his head and died.

“It was so sad,” Annette recalls through tears, almost at a loss for any other words to describe the day she knew would come. “I lived my greatest fear.”

Within four hours of Carson’s death, doctors removed the tumor that engulfed his brain and spine and shipped it to Baylor College of Medicine in Houston, where researchers injected it into mice. The tumor kept growing.

It remains alive today at Texas Tech University Health Science Center in Lubbock, aiding in one of three studies throughout the state to develop less-toxic treatments for pediatric cancer.

At the end of a patient’s life, doctors typically ask if the family wants an autopsy. Carson made his wishes clear long before the subject arose — “Make sure they study those tumors.”

Just months after his death, Annette launched the Carson Leslie Foundation to leverage donations toward specific studies carefully selected by a research board of doctors, including Carson’s oncologist. The mission is about more than the seemingly insurmountable goal of curing cancer; it’s also about bettering the lives of the estimated 10,450 children expected to be diagnosed by the end of this year, according to statistics from the American Cancer Society.

Recently the foundation secured a $3.2 million partnership with the Cancer Prevention and Research Institute of Texas, which is helping fund studies to find better treatments with fewer side effects.

Annette fills her time building relationships in the medical community, increasing awareness and planning local fundraisers. She even played a role at the political level, speaking at the Washington, D.C., home of U.S. Rep. Michael McCaul (a St. Mark’s School alumnus) to help kick off the bipartisan childhood cancer caucus that spurred the bill known as “The Creating Hope Act,” which incentivizes pharmaceutical companies to devote more efforts to cancer drugs for children.

“I can’t bring him back,” Annette says. “For me, it’s the way I grieve. I’ve always been a woman of action.”

Carson spent all of his brief life in Preston Hollow. As a baby he yearned for affection, his father, Craig, recalls.

“He always wanted to be held,” he says. “He was much different than his older brother, who was an easy baby, more independent.”

Carson lived and breathed sports, especially baseball. His dad coached both of the boys’ peewee teams at the Town North YMCA, and Carson became competitive as early as 5 years old. He wanted to play and win.

In his book, Carson describes himself as a “stud.” Adorning the entryway of the Leslie home is a large, black-and-white photo of Carson at the beach. He stands shirtless, shaggy-haired and confident.

In the early fall of 2006, Carson was a 14-year-old freshman at the Covenant School of Dallas, busy with two-a-day football practices. By November, doctors were cutting into his skull in an attempt to remove the malignant tumors that already had taken over his brain and spine. Carson wrote about the day he learned the word “oncology”: “I didn’t know oncology meant cancer, but my parents did. I did not know to cry Today, I know a lot about the word oncology: I know how the word feels, smells and tastes. It is a word I wish I still did not know.”

Naturally, he hated his oncologist, Dr. Daniel Bowers, at first. Annette avoided him as long as she could.

“I felt like he was a used-car salesman,” she says. “Every time I turned around he was walking toward the room. I wouldn’t let him in. I didn’t want to believe that it was really cancer.”

Bowers explains that Carson’s type of cancer, medulloblastoma, has a high survival rate of 75-80 percent and in most cases, doctors treat it with “everything but the kitchen sink,” attacking the tumor with as much radiation and chemotherapy the body can take.

While ill, Carson spent much of his time inspiring others and tending to his bucket list. He met celebrities and athletes (he formed a special relationship with the Rangers’ Michael Young), traveled to wild lands, saw his school’s stadium named after him and became a published author. But in those first moments, hearing the words that changed everything, he reacted like any fal- lible human being would.

“He turned over in his bed and just wept and wept and wept,” Annette says. He wouldn’t open his eyes, he wouldn’t talk, he wouldn’t eat. The doctors became concerned. Finally, his brother Craig T. — whom he called “Bub” — walked into the room with a cardboard cut-out of Derek Jeter and told him he’d better get up and start fighting because he was going to meet his baseball hero.

By the beginning of 2008, Carson went into remission. His hair grew back, and he returned to school.

“I was convinced that he was cured,” Bowers says.

Medulloblastoma returns in about 20 percent of patients who survive. For nearly a year, each of Carson’s routine brain scans came back clean. Until one didn’t. Doctors spotted crumbles of medulloblastoma up and down his spine and, after a couple of last-ditch treatments failed, including a stint at St. Jude’s Children’s Research Hospital, the Leslie family ran out of options. In June 2009, another brain scan revealed the tumor had grown.

“We could tell by the way Dr. Bowers walked into the room,” Annette says. “It looked like he had been hit by 17 trucks.”

Although Bowers has good relationships with all his patients, Carson was special, he says. They saw each other almost daily, and Bowers always made sure he’d read the sports section, because when they weren’t talking about cancer they were talking about sports.

The final diagnosis hit Bowers hard.

“It was very much out of the blue,” he says. “It’s the most awful thing that I do. Tumors are smart. That’s the most frustrating part of the job. Over time, they build up resistance to treatment.”

Through it all, Carson never complained or got angry with Bowers. The oncologist he once hated — who came bearing the worst possible news — became one of his best friends. Bowers recalls a moment the two shared near the end, when Carson knew he was dying.

“I could tell Carson was very quiet and thinking about it. And then he said to me, ‘I just want to tell you I love you.’ No patient has ever said that.”

Inschool, Carson had always been more of a math-and-science kid. When he received an English assignment to write about his experience with cancer, Annette called Pat Gordon, a family friend who had been Craig T’s English teacher at Covenant. She agreed to come over to the house and tutor Carson.

Gordon describes herself as the Dictaphone to Carson’s writing process. Their oneon-one meetings became a form of therapy in which she prepared a list of topics and asked Carson questions about each. Inspired by the structure of Sandra Cisneros’ “The House on Mango Street,” each topic became a chapter of Carson’s book — “Waiting Rooms,” “Birthdays,” “Friendship 101.”

Carson spoke, and Gordon typed.

“He was a deep-souled boy,” she says. “He really started to appreciate the written word. He understood language and its transformative qualities.” Most people don’t think about the time they have on earth, Gordon says, but the immediacy of Carson’s life could not be ignored. He shared with her the loneliness of having cancer. After a while, people stop coming around, and their lives move on. They don’t know how to treat someone who’s dying; they only see the death.

“We’ve singled it out,” Gordon says. “You have to look at the whole person. Death is part of the human experience. You don’t have to have words; you just have to show up.”

Every single day for three years after Carson’s death, Annette walked from her home across the street to visit his memorial bench at Sparkman Hillcrest. It sits under a large oak tree, facing a picturesque pond and gazebo. A tattered baseball rests in a groove of the tree trunk. The bench is engraved with Carson’s favorite Bible verse, Joshua 1:9: “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”

Now, Annette allows herself to visit only once a week. She brings with her a damp paper towel to clean the bench of dust and debris. She kisses the edge of the bench, and wipes it clean again because, she says, Carson hated her lipstick smudges.

All the while, she can’t get the words out of her head: “Mama, I thought I was gonna make it.”

Fulfilling her promise to Carson through the Carson Leslie Foundation is what helps her heal. Bowers, an associate professor at UT Southwestern, still spends most of his workday trying to outsmart the tumors that killed Carson and continue to kill 1 in 5 children diagnosed with cancer.

Gordon now serves as the director of rhetoric at Covenant. Her brief time with Carson taught her to listen more and ask better questions of her students. She still teaches one senior English class, centered on the theme, “What does it mean to be an authentic human being?”

The search for a cancer cure will go on, and on, but amid all the colored bracelets and Make-a-Wish moments, Carson left the world with something else that’s often overlooked: a manual for how to treat others.

He wrote about this in a June 29, 2009, entry titled “Blessings,” shortly after he received his final diagnosis.

“I’m not writing this book to bring awareness to children’s cancer, but to give insight on how to treat others who are battling crippling diseases such as cancer. Share your blessings — no matter how small.”

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