Living and laughing

By Mark Dent

Published on Thu., November 20th, 2008

A white surgical mask covers Darren Kennedy’s nose and mouth. You notice this right away when he opens the door at his Missouri Street duplex on a late September day.

He needs the mask. His lungs can’t handle the air, which becomes obvious when you see the breathing machine connected to his arm by a tube and slung over his shoulder like a small backpack. He’s had that since his right lung collapsed.

“I only have nine more days with it,” he says cheerfully, pointing to the machine.

Bacteria got into the lung somehow, maybe from this crusty old house, and boom, the lung collapsed. These things happen when your immune system is down. And his has been down since Aug. 7.

It was on that day Darren, an Overland Park senior, learned his leukemia had returned. After two years of maintenance chemotherapy, he had only two months left before he’d stop treatment, and he relapsed.

His mother, Fe, moves about the house, washing dishes and packing clothes. Two days later, in early October, Darren and his parents drove to Boston, where he is now, in isolation, recovering from a stem cell transplant. Doctors told Darren that patients his age who have relapsed have a 10 percent survival rate.

On this September day, his words coming from behind the mask are slow and slurred because the collapsed lung keeps his breaths swift and short. But the charisma comes through clearly.

“Hey, I’m Darren, and I’ve got a lot of shit wrong with me,” he jokes.

Why not joke? He always makes fun of the wannabe dancers on “So You Think You Can Dance” and recites lines from “Chappelle’s Show.” He took his race, half-black and half-Filipino, which could have been an obstacle for someone growing up in Johnson County, gave it its own cool name, “Blasian,” and never let it affect anything he did.

He’ll admit he’s a little goofy. But that happens after years of watching Soul Train and sci-fi, listening and dancing to obscure funk music (ever heard of “Oh Sheila”?) and reading comics and graphic novels.

“I had to go back to school with a cane, but I got a handicapped pass. I used that baby for a week after I didn’t need it,” he says.

Why would he complain about not being able to fully walk for a while? He used to run everywhere. Wanted to be a college runner. But leukemia took that dream away. A cane for a few days didn’t make a difference.

“I’m going to be a bubble boy for like a month,” he says.

Why not approach isolation in good humor? An industrial designer, he has time to work on art projects. Maybe he’ll do some comic book illustrations or portraits of himself and friends like he’s done in the past.

Mary Dinges, a nurse at the University of Kansas Medical Center, has seen patients who sit around and wait for the doctors to do all the work and patients who don’t follow directions. She’s seen patients who do everything right, and then she’s seen Darren. The college kid who’s had so much taken away yet stretches and rides a stationary bike at 5 a.m. because he knows it’s good for his body, who comforts his parents when they thought they would need to comfort him, and who got off the table and danced after getting a biopsy because one of his nurses was curious about popping and locking.

“He knows there’s a chance he could die,” Dinges said. “But he says, ‘You know, I’m not dead yet.’”

The air conditioner is off inside the duplex, and sweat stains dampen the sweatshirt on Darren’s body. It’s gray, just like his sweatpants. A Kansas Track and Field logo is emblazoned on both. Darren always wanted to run track and cross country here.

Three years ago, as a freshman, he met up with coach Stanley Redwine and the KU runners in early August ready to forget about the summer. This was his shot to become a walk-on, to realize his dream.

The problem was Darren didn’t feel well. Hadn’t since June. He struggled through most of his workouts and ended each run with the mindset that when he made it to Lawrence and ran in a group, he’d feel much better.

He didn’t.

Darren always lagged. The established runners set the pace, and he’d bound along for one mile, two miles, three miles, and then he couldn’t take it.

He didn’t feel tired. He wasn’t out of breath. His legs didn’t ache. He just couldn’t keep up.

Then-KU runner Paul Hefferon knew Darren. He had run against him in high school, knew Darren was as intense as anyone. He thought something was wrong, maybe an iron deficiency, something physical. It would never be anything mental with Darren.

“I’d talk to him every day,” Hefferon said, “and he’d be like, ‘Man, I’m trying.’”

The disappointments piled up. By late October, Redwine told Darren to come back the next year.

But Darren kept running by himself. He still couldn’t break out of his funk and started questioning his health. A large bump had swollen on his neck. Hives appeared on his arms at random times. He broke into sweats at night.

Friends on his floor at Templin Hall assured him the bump on his neck was nothing, that it would go down. That was enough for Darren. He knew he didn’t feel right, but he didn’t do anything about it. He wanted to run.

When he ran, the dream was alive. Somehow he could still be a college runner. If he stopped, he was giving up. The dream would end.

Then, one November day, Darren was walking uphill to class. He panted and struggled to make it to the top. Three months earlier he’d been running 60 miles a week. Around him, out-of-shape kids didn’t breathe heavily at all.

Darren gave in. He threw his running shoes in the closet and called his father, Keith, who was living with Fe near Boston, telling him about all his health problems. Before then, Keith had had no idea. He told Darren to see the family doctor in Kansas City.

So Darren went. The doctor felt the bump on Darren’s neck and found several smaller ones. He told him they were lymph nodes, and he found more swollen ones around his groin and armpits. Darren felt as if he was in a bad movie. Alien parasites were inside his body, trying to burst out.

The doctor ordered a biopsy for the lymph node on his groin, and Darren limped around Lawrence for a few days waiting for the result.

Back in the same doctor’s office on Nov. 22 about to hear the results, he played the dream scenario in his head while he waited. His doctor would rush in with a grin on his face and say he had mono. He’d have to take a couple weeks off and then start running again.

Then his world collapsed.

The doctor walked in slowly and scratched his head. No smile. He told Darren his bone marrow was creating abnormal leukemia cells that were crowding out his normal red and white blood cells. It was serious, something called acute lymphoblastic leukemia.

He sat there, shocked. He muttered one word, a question.

“Yeah?”

“We have to get you in right away.”

Then silence. Just thoughts of losing his running career. His routine at KU. His life.

Alone, Darren wanted familiarity, comfort. He left the hospital and drove toward his family’s old home in Johnson County. He stopped at a Burger King and then pulled up to a neighborhood park. He’d done running workouts there before.

In that car, visions of himself from a few months earlier crept into his mind. He was running, killing himself to improve his times. He was healthy. He was normal.

In the coming weeks and months, the vision of that runner dissipated as his body underwent punishing amounts of chemotherapy in Boston. When he left the hospital after a week of chemo and got back to his parents’ house, he looked at his scrawny figure in the mirror. He didn’t see a youthful, 6-foot-2, half-black, half-Filipino athlete. He thought he saw a Holocaust victim.

Darren had always lived an independent life, rarely asking for favors and letting nurses find out if something hurt rather than telling them. He never wanted to bother anyone. For the first two months of chemotherapy, his body was so weak that his mother had to help him bathe and even then, he shook uncontrollably from the activity.

His dependence on others would have torn him apart inside, but for a while, Darren could hardly piece together thoughts. The chemo messed with his mind. He spent the bad days lying on his bed, staring at the ceiling.

But in that car, all he thought about was the runner. The tears came.

He wanted to dance. That’s how he felt after six months of chemo. There was no day they told him he was cured, just a step-by-step process that made him stronger and put him in remission by May 2006, when normalcy started again.

Darren had plans when he moved back to Lawrence. He took up dancing again with the Rhythm Kingz and won several popping and locking competitions. His running dreams were over, but he filled the void by becoming a manager for the track and cross country teams. When Darren saw Colby Wissel win the 2006 Big 12 Championship, he felt the fire, as though he was the one running.

And instead of pushing himself with his runs, Darren did that at the industrial design building. He would go there in the early evenings and sometimes would work on art projects until the next morning.

“He’d tell me that for his projects he could easily do enough to get 100 percent on them,” said his friend and Overland Park senior Jim Schweiker, “but he’d always force himself to work harder to become the best of anybody.”

Darren didn’t talk about leukemia unless someone asked. And none of his friends asked. They say they forgot he had it. The laughing, dancing bundle of energy was back.

Then came the harsh reminder in August.

Darren was almost a free man. Two months of maintenance chemo separated him from the end. But on Aug. 7, Darren was back at the doctor. The leukemic blasts in his bone marrow had gotten used to his medication. Relapse.

The news surprised him but only for a second. He didn’t think about how the doctors would surely overwhelm him with chemo for the next month. He didn’t sense a loss of invincibility. He didn’t wander to his old neighborhood for comfort. At that moment, one thought crossed his mind — fight.

And that attitude hasn’t changed. Keith Kennedy got a phone call from Darren a few weeks ago. His son started talking about parallel universes.

This was out of character. Keith had never heard anything like this. Darren talked about an alternate version of himself who was running track, doing art projects at school and living like everyone else.

Then, Keith asked him a simple question. Would he change into that Darren, if he could?

No, Darren said.

He wouldn’t. If he did, he wouldn’t have met all the doctors, nurses and patients he’s befriended on the way. He wouldn’t be as close to his friends and parents. He wouldn’t be himself.

“I will tell you,” his father, Keith, said, “he is the strongest person I know. His resolve, his focus, his sense of humor. He approaches this thing with such courage.

“He is my hero.”

They’re calling it his new birthday. If everything goes to plan, Darren, his family and his friends will forever recognize Oct. 31, 2008, as a new beginning, the day tiny cells from two umbilical cords gave him life.

The procedure was a cord blood stem cell transplant. Stem cells from the cord blood worked their way into his bone marrow through an IV line for about an hour. Ideally, those cells will settle and start forming healthy red and white blood cells and platelets.

Now Darren is in the midst of the toughest part for him yet: day 20 of 40 in isolation at the Dana-Farber Cancer Institute in Boston. Doctors say the stem cells are adjusting to his body according to schedule, but the process has been difficult. Since the transplant, Darren has experienced several normal side effects. His weight has ballooned from 172 to 208 pounds because of a liver complication. Every time he coughs, his organs throb. He’s fed through a tube.

Darren finds himself apologizing often, to the medical staff for having to baby him, and to his family for having to see him like this.

But on the better days he walks around. He checks his computer. He’s even showed off a few dance moves to the nurses. Darren passes time in isolation, where he’s around only his parents and the medical staff, with phone calls from friends and Redwine and a steady stream of cheesy movies on the Sci-Fi Channel. A banner signed by tons of his friends and flowers sent from Lew Perkins decorate his room.

Although he is about halfway through the isolation period, the risks remain. Darren’s body is brand new. He has no immunity. No way to fight infections. A common cold would be a major complication. The flu could kill him.

Aside from infection, the new stem cells could attack his body and cause severe trauma. It’s called graft-versus-host disease.

Best-case scenario is this: Darren builds immunity, suffers minor complications with the new cells and leaves the hospital shortly after the 40 days. After about 100 days, he’ll have enough strength to exercise briefly, and he’ll make routine visits to the hospital, probably weekly. He’ll take lots of medication. In one year, he’ll be able to eat at restaurants again. For the next few years, he’ll have to take antibiotics or antiviral meds. Long-term, he’ll probably have to take some form of medication routinely to live a healthy life, but always with a chance that complications with the stem cells could arise at any time.

Worst case: Darren dies. About 60 percent of cord blood transplant patients at Dana-Farber live until the next year. That means 40 percent don’t. Of course, Darren has heard all about the 10 percent long-term survival rate for a relapse patient his age.

But Darren dismissed that right after he heard it.

“I’m not some statistic,” he said. “I’m me. Why can’t I be in the 10 percent?”

That’s what he tells his friends and family. Darren knows he could die, and he knows life won’t be easy in the coming weeks. But he pushes the complications to the back of his mind. All he thinks about regarding the leukemia is how he’ll spend the rest of these 40 days in isolation.

His life is like one of his favorite poems, Langston Hughes’ “A Dream Deferred.” This disease, this setback, as Darren calls it, deferred his old dreams of running and living at KU like a normal student, but he’s got plenty of new ones.

He’s going to do art projects he wouldn’t have time for in school and try to learn Filipino while he’s in the hospital. That way, he can talk to his mother, Fe, in her native language so he can truly understand her. Long term, when it’s all over, he’s not sure yet. But he never says “if” regarding the future. It’s when.

“One day I’m going to get that ultimate goal…” Darren says on that September afternoon, not quite finishing the thought.

He explodes with laughter. The white mask can hide the smile, but not the sound.

- Edited by Tara Smith

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