‘I need God more than ever’

‘I need God more than ever’

‘I need God more than ever’

At 31, D.C. soccer standout Shawn Kuykendall finds support in his family, friends and faith as he battles thymic cancer

Published on November 22, 2013

It was a clear summer day, but Shawn Kuykendall could feel a storm brewing somewhere deep inside. He wore shorts and canvas sneakers, his hair shaved but noticeably patchy in areas, like islands on a globe.

“How’s it going?” one of the young men asked.

“Uh, you know,” Kuykendall replied.

Above: Shawn Kuykendall is joined by his mother and two friends for weekly Wednesday prayers at the Washington National Cathedral.

Editor’s note: Shawn Kuykendall died early in the morning of March 12, 2014, eight months after being diagnosed with an incurable thymic cancer. He was 32.

Soon, they were all there, gathered in front of the massive building. Kuykendall had invited part of his support network – family, friends and some of the soccer players from American University, where he had coached until recently — to meet in front of the Washington National Cathedral at noon.

They walked inside as a group, single file down cement steps to the crypt level, finding seats in a cavernous room where colorful mosaics decorate the walls.

As friends and family scattered to different corners, Kuykendall turned a chair to face one wall. The bright tiles above him depicted a scene of Jesus after the resurrection. Kuykendall pulled out his notebook and flipped past the first page, where just a couple of weeks earlier, on July 20, he’d scribbled out an initial entry:

I’ve been diagnosed w/ cancer. It stinks. I’m 31, fit and my body is failing me. I can’t tell you how to feel or what to feel. I can hardly tell you how I feel.

He’d taken to the journal to help organize his thoughts. There was no other way to process the storm. In the spring, he was working out with the soccer team at American, where he was a four-year star before playing professionally with D.C. United and the New York Red Bulls. He was competing in a couple of rec leagues and exercising daily. He was in peak physical shape. At least, he thought he was.

A tumor had quietly rooted itself inside his chest, growing to the size of a small apple. He started to feel fatigued. Then one day a sharp pain pierced his back and midsection. There was blood work and doctor visits and more questions than answers. Eventually, that first week of July, doctors broke the news: thymic cancer, an extremely rare form. Stage IV, which meant it had spread. There was no known cure.

Friends and family lay their hands on Kuykendall for a final prayer. "I'm not going to waste my emotions wallowing in self-pity," he says.

Praise Be to God, Kuykendall wrote in the journal. You’re gonna see me write this a lot. Especially when I don’t know what’s going on.

He was facing a half-dozen chemotherapy treatments and beyond that — uncertainty. Kuykendall had no idea how to make sense of it all, what exactly would lie in store or how he’d keep his spirits up. There are 1.6 million people who have cancer diagnosed each year in the United States. Who among them knows?

In the Resurrection Chapel, Kuykendall’s mother and sister were just a few feet away, kneeled before a wall that featured Jesus and Saint Thomas the Apostle. Others had opened Bibles. Sports might be why the family name resonates in the soccer community – all five Kuykendall children played Division I soccer and their father played professionally for the Washington Diplomats more than three decades ago — but they all know Shawn as an extroverted jokester. How many pop songs did he sing with his acoustic guitar and then upload to YouTube? How many goofy photos had he shared on Instagram? How many times did he know just the right thing to say to lift someone’s spirits?

And now, with a medical death sentence shadowing him, he had no choice but to confront everything head-on. Why am I here? Why do these things happen? Why did God do this?

“Clearly when you get diagnosed with cancer, especially one as rare as this, it immediately comes to mind, really got to come to grips with it because you don’t know how long you’re going to live, you don’t know how fast it’s going to progress,” he said. “It’s really taken me to a crossroad with my faith.”

The doctors had a plan. They’d start with chemotherapy, six treatments from July until November, one every three weeks. They hoped the chemo might stop the cancer’s progression and shrink the tumor. Maybe they could eventually cut the mass away and give him more time.

The Kuykendalls had their plan, too. They avoided reading about the disease on the Internet. Faith would guide them.

Doctor and patient weren’t necessarily at odds.

“If there’s something that helps keep stability, keeps the mood up, that is usually a positive. Faith is one of these things, so I’m all in favor of it,” said Kuykendall’s doctor, Giuseppe Giaccone, head of the Lombardi Comprehensive Cancer Center’s lung cancer program at MedStar Georgetown University Hospital. “On the other hand, you may have situations where people do not accept the reality and that can be problematic because you need to be able to speak openly with the patient and plan together the further treatment. So you also need people to understand what’s going on and accept it when necessary.”

Armed with their Christian faith and buoyed by Kuykendall’s fighting spirit, they staked out every corner of the dim chamber. “The Resurrection Chapel gives expression of Jesus Christ’s victory over death,” reads the cathedral literature. It would become a weekly appointment. Gather. Descend the cement steps. Bow heads. And close their eyes in preparation for the biggest fight of their lives.

Kuykendall underwent six chemotherapy treatments and became friendly with staff at MedStar Georgetown University Hospital, including oncology nurse Allison Whitt.

‘Our new normal’

A curtain closed Bay 14 from the rest of the world. Kuykendall, wearing sweatpants and a white T-shirt, sat in the corner, a clear plastic tube running from a port in his chest to a bag hanging overhead. The Lombardi Cancer Center can be a lonely place, a drip-by-drip reminder of what’s at stake.

The second round of chemo just happened on the 25th, Kuykendall wrote in late July. It’s really hard to pray and to focus, to read or to meditate on God at this moment, on His word while I’m in pain.

FAMILY VIDEOS

Kuykendall has posted more than two dozen light-hearted videos on YouTube over the past seven years. Included among them are the family's quirky annual Christmas music videos (a must-see), and several of him playing guitar and singing.




Six weeks later, on a warm August day, Kuykendall was back, and Bay 14 was crammed with family and friends, enough to prompt a neighboring patient to complain about the noise. Kuykendall and his support team couldn’t help themselves. The medicine was serious — a crippling cocktail of menacing names: cisplatin, doxorubicin and cyclophosphamide — but spirits remained light.

They talked pop stars and TV shows, soccer and celebrities. Everything but cancer. A small machine — an IV pump, not larger than a shoebox — hummed nearby, pushing chemicals through the tube. But the medication was treated like something to be monitored casually, like the air conditioner.

Kuykendall told bad jokes — “What did the fish say when he ran into the wall? Dam.” — and the whole room erupted in laughter.

“Hate to break the party up,” said Allison Whitt, an oncology nurse. She pulled on a pair of rubber gloves and swapped out the empty plastic bags. Soon a new red fluid crawled through the tube and Kuykendall sat back in the cushioned chair and submitted to the medicine.

He had tried in the past to control his body. Growing up, he was always shorter than the others. He’d step into the bathroom, close his eyes and plead with God — always disappointed to flip the switch and see the undersize boy in the mirror.

Years passed and his body was suddenly an even bigger mystery. Kuykendall could rub his chest and feel the tumor, a small rubbery bump. Life was different now — “Our new normal,” as his mother called it — and every day brought fresh reminders.

Kuykendall knew the prognosis wasn’t good. Because thymic cancer is so rare — about 500 new cases are diagnosed in the United States each year — there was a lot of guesswork involved. His doctor said he might have two years left. Maybe more. Maybe less.

The thymus is a gland located in the middle of the chest, just behind the sternum. It is vital to shaping the immune system early in life. By adulthood, it’s mostly fat tissue with no real function.

Kuykendall sought out Giaccone, one of the few doctors in the country who specializes in thymic cancer. The doctor said chemotherapy typically shows about a 50 percent success rate in shrinking the tumor.

“I think he’s in the good part of 50 percent,” Giaccone said.

Being around kids from a McLean youth soccer league in August is good for Kuykendall's spirit.

‘Take it as it is’

Because of his treatment, Kuykendall isn’t supposed to be in the sun too long, so on a cool September Saturday afternoon he found a seat in the shade of Section 308. D.C. United was suffering through a terrible season and was hosting the Los Angeles Galaxy at a mostly empty RFK Stadium.

“When I was here, we’d just won the [MLS] Cup so it was 24,000″ fans, he told the friends who’d accompanied him. “The whole lower bowl was full.”

Kuykendall was drafted by United in 2005, appearing in two games before he was traded to the Red Bulls a year later. A torn anterior cruciate ligament in his right knee derailed his career, but he never actually walked away from soccer. How could he? Along with their Christian faith, the sport had been pillar for the Kuykendall family.

Shawn, center, is shown with his father, Kurt, and brother Kris. Kurt played professional soccer with the Washington Diplomats. (Family photo)

His father, Kurt, discovered soccer as a student at American in the early 1970s. Within three years of first kicking a ball, he was selected for the U.S. national team and was drafted by the Washington Diplomats of the North American Soccer League, the highest level of pro soccer in the United States at the time.

Kurt was a goaltender. He learned to be stoic. Even if his team was scored on, he felt it was his job to be the rock, the team’s stabilizing force. “You have to pretend that things are going well, and we’re going to get out of it,” he said. It was a skill set that would suit the family patriarch for years to come.

When the game finally passed Kurt by, he and his college sweetheart, Sherry, returned to the Washington area. He became a licensed Realtor and began a family. Together they raised five kids and built a comfortable life in the Virginia suburbs.

Growing up, the Kuykendall children were always allowed to play ball in the house — encouraged, actually — but there was a 25-cent fine for hitting a wall or knocking over a lamp. Kurt called it the “Family Room League,” and he taught his three boys and two girls soccer skills and quick indoor training lessons on a large area rug.

The couple home-schooled their children. Each morning would start with an hour of soccer before the daily devotional and then classroom work. Shawn always raced his siblings, treating everything like a competition. “He didn’t care if he did it right or wrong, he just wanted to be the fastest,” his mother said.

Juggling five kids and their busy schedules wasn’t easy. Plus, Kurt coached and Sherry played in adult leagues. There was an order to everything. The family had “Dollar Appreciation Week” and all the kids had to earn enough money through chore work to earn daily “rent.”

Years later, though, any sense of order suddenly felt shattered. Kurt knows his family has been blessed but says he’s had to accept that things like wealth and power were “illusions of control.”

“It’s actually very freeing because I can’t control the outcome for Shawn,” he said. “I can’t control the outcome for me. I thought I could — and I certainly have tried — but I now know I can’t.”

For both mother and father, when Shawn wasn’t around is when they worried most. They stayed home with their thoughts the day their son returned to RFK Stadium to watch his old team. Midway through the game, a fan club across the field unveiled a 12-foot-long banner in Kuykendall’s honor, featuring the words “once United, always United.” At halftime, Kuykendall was eager to go visit.

“How are you doing?” one fan asked.

“Doing good,” Kuykendall said. “Four cycles in. . . . Some people live a long time with this, some people don’t. . . . A lot of it is my faith and trust in God. He’s got a plan for this. Just take it as it is. It is what it is, right? Can’t do anything about it. I’m not gonna waste my emotions wallowing in self-pity.”

He returned to his friends in Section 308 for the second half. Feeling his energy level fading, he couldn’t have been further removed from the field and from his playing days.

American men's soccer Coach Todd West, left, and assistant Nick Stames show their support for Kuykendall with close shaves.

‘I’m pretty drained through the process’

As the weeks passed, Kuykendall had to grow comfortable with what he saw in the mirror each morning. His skin ran the spectrum from pale to yellow. He missed having hair to comb. He’d taken to dyeing his disappearing eyebrows darker.

He prayed often about what good could come from his situation.

I realized that I’ve spent a lot of time on things that maybe don’t matter too much, he wrote in his journal, whether it was a text or a stupid iPhone game or TV. I’ve gotten really good at things that don’t matter. Oh, Lord, please forgive me for even in these times for putting these inconsequential things before you. Gotta tighten my game up.

He continued with his weekly visits to the cathedral, praying for others more than himself. Some friends helped launch a nonprofit called Kuykenstrong. The fundraising was intended to help with medical bills, but most of that had been covered by his COBRA insurance. He’d hoped the foundation, which had raised about $60,000, mostly through the sale of #Kuykenstrong T-shirts, eventually could be used to help others.

’Shawn

””

’Shawn (””)

One morning in late September, Kuykendall woke up in particularly good spirits and was back at American wearing a blue practice jersey. He was part of a team again, joking, laughing and talking soccer. Before practice, the squad squeezed into the campus salon, Tigi, where the coaches agreed to get their heads shaved, a symbol of solidarity with their former star.

“Look at them,” Kuykendall cooed. “They’re nervous.”

Todd West lowered himself into a chair, and Kuykendall took the clippers and buzzed a line down the middle of West’s scalp, sending wisps of dark hair to the tiled floor. West is in his 14th year as American’s coach and is the man who recruited Kuykendall to play at the school and later hired him as an assistant coach.

“If anything, his competitiveness was something you wanted to tone down,” West said of Kuykendall’s playing days, “which is better than having to dial it up.”

Players assured their newly bald coaches they’d look more intimidating on the sideline, and everyone laughed as they walked out of the salon and toward the nearby field. Kuykendall practiced with the team, partaking in an up-tempo keep-away drill. He was the most animated player on the field. “Let’s go! . . . Your feet are garbage. . . . Really, Charlie?!”

As the practice session wore on, his breathing became labored and his hands found his hips. When players took a water break, Kuykendall called out to coaches, “An IV for me.”

When he woke up early the next morning, he logged onto Facebook and wrote:

Chemo. . . Round 5. . . And while I have certainly been gaining strength and feeling better after each round, I must admit I’m pretty drained through the process. This is the first time I’m really dreading going in for treatment and the subsequent awful days to follow. . . . It’s not easy to fight and I certainly can put on a brave front. Today, I want to say how difficult it is and I need God more than ever.

Kuykendall had a short meeting with his doctor and then went through the familiar routine. He was stationed in Bay 16 this time, chained to the humming machine by the clear plastic tube. Friends came and went throughout the day, and the group swapped embarrassing stories about ex-girlfriends, college hangovers, shared hijinks. They teased Kuykendall plenty.

“You can’t do that!” he’d protest with a smile. “I have cancer.”

Eventually, the medicine caught up to him, and his eyelids became heavy. Melanie Menditch, a childhood friend who accompanied him to each treatment, tried to keep the mood light.

“Shawn, what was the best day of your life?” she asked.

He was silent for a moment, thinking.

“I don’t have one,” he said. “Not yet.”

His condition seemed to worsen following his sixth chemotherapy treatment. "Just a constant state of discomfort," he said.

‘Argh! That taste!’

Shawn’s mental state was often dictated by his physical condition. He had gained about 15 pounds from his springtime weight of 175. He couldn’t exercise as much as he’d like and his appetite only grew. A whole pizza was not out of the question, as food was one of the few comforts readily available.

“People always want you to go to dinner, too, which is great,” he told Giaccone during one appointment. “But I eat too much.”

He was usually the youngest patient at the Lombardi Cancer Center, always among the first to arrive and last to leave. Each session felt more draining than the last, and since late summer he’d been spending more nights at his parents’ home in Oakton. He had recently started a new job with Montgomery Soccer Inc., the governing body for one of the country’s most robust and active youth soccer communities, but was unable to work steady hours. There were headaches and temperature changes and nausea.

His condition seemed to worsen following the most recent treatment. At night, he’d sweat through two or three shirts. He had difficulty sleeping and spent full days in bed. And even when he was feeling fine, he knew everything could change within an hour. “Just a constant state of discomfort,” he said.

Kuykendall woke up one Sunday in mid-October with pain shooting through his lower back and stomach. By the next day, it had spread to his hip, leg and knee. It felt similar to the pain that first sent him to the doctor four months earlier and all he could think was: Is cancer taking over my body?

Doctors encouraged him to dip into his pain medication and the next morning he visited Giaccone, who couldn’t link the pain symptoms with the cancer. Kuykendall stuck with the Percocet and struggled through the week, finding some comfort in routine. He wrote in his journal:

I need to be more purposeful. I’m at Prayer Wednesday here and we’ve had 6 people show. I need to be pouring into their lives, I need to be calling to them more, I need to be investing in them, coming before God, humbly bringing things to God.

When he met with Giaccone next, he heard a bit of good news: The tumor that had previously been the size of a small apple was now about the size of a golf ball. The doctor was optimistic that surgery might be an option but wanted to wait until the PET scan following the final chemo treatment.

At treatment No. 6, Kuykendall was assigned to Bay 10.

“When does my hair start growing back?” he asked a nurse.

“Month or two months,” she said. “But it may begin sprouting a little sooner.”

Another long day rotating through colorful liquids. The machine started beeping late in the afternoon and a nurse quickly appeared. He was almost finished, needing just a final injection of saline to clear the line and flush the port in his chest. Even though the solution is fed directly into his bloodstream, the effects quickly find his mouth.

“Argh! That taste!” Kuykendall said, grabbing his nose.

The unit was quiet and mostly empty when Kuykendall finished. His eyes were half-closed when it came time to leave.

“You’re good to go,” a nurse announced.

He slowly rose from the chair and shuffled out of the building.

“I think you should dance out or something, Shawn,” his mother said.

Kuykendall after a PET scan on Nov. 15. Doctors relied on scan results before making a final determination on surgery.

‘I’m scared. I want to live’

Soccer is a sport dependent on structure. There are rules and boundaries. For anything good to happen, several parts must move in sync, each piece giving the larger unit purpose and mission. In the Kuykendall family, everyone processed Shawn’s sickness separately but also together.

“You hear other stories of families going through it, you’re praying for them, but until it actually hits you, you don’t know how hard it is,” Sherry said.

“We’re hopeful,” Kurt said. “We realize, it could be one answer, could be another answer. We’ve resigned ourselves it doesn’t matter. We’re going to miss him if the Lord takes him home early. If he doesn’t, we’re grateful to have him around more.”

As the days grew colder in November, Kuykendall spent most nights at his parents’ home. Even on days he couldn’t bear to leave the house, he stayed connected through social media. Friends could tell that the bad days began to outnumber the good. “Oh hi throw up. 3rd in 4 days. #ChemoProbs,” he tweeted, 2 1/2 weeks following his final chemo treatment. It was followed a few days later by the simple update: “This is getting worse.”

Photos: The fight of his life

Completion of a sixth round of chemotherapy on Oct. 17 leaves Kuykendall in a celebratory mood. Click on the image to view the gallery.

Though his hair seemed ready to return, his energy level was less willing. Something was wrong. With the first five chemo treatments, his condition and spirits improved with each passing day. But several weeks had passed and Kuykendall was still vomiting, struggling to sleep through the night and short on energy. He missed a couple of his midweek pilgrimages to the cathedral, and at night, the cold sweats would get so bad that he’d wrap a towel around his head and wake up to find it drenched.

Doctors ordered PET and CT scans and would compare the results with his initial scans before making a final determination on surgery. At the hospital, Kuykendall prayed as a laser passed over his body. Between scans, he grimaced with pain and shivered with discomfort. At the end of a long day, he went straight to the emergency room.

He waited and waited, and before long, the on-call physicians were able to look at the scans from earlier in the day. That’s when his worst fears were confirmed.

On the drive home, he pulled out his iPhone and began texting updates to those who’d been checking in on him.

“Just leaving ER. Not much to say. Scans came back. Mass is larger. Spread more aggressive.”

“Disheartened to say the least. Will keep fighting. And praying to find peace.”

“Its ok. God has a plan. Live or die. I win. Will continue to fight. But can’t lose hope.”

The next day, he logged onto Facebook and broke the news to his larger family of supporters, those who prayed, who bought T-shirts, who called every day.

I’m scared. I want to liveBut I’m here to say that God is sovereign and good. When I can see the good. And when I can’t see the good.

The news hasn't been as positive in November. But Kuykendall keeps the faith. "God has a plan. Live or die I win."

Two days later, accompanied by his parents, Kuykendall arrived at Giaccone’s office to discuss the next step. The doctor explained that even though the mass grew only a half-centimeter, any growth was a bad sign. Giaccone feared Kuykendall’s body had begun to reject the chemotherapy.

Surgery felt like a near-certainty only a couple of weeks earlier. It was now off the table for the time being. Radiation, too, could do more damage than good at this point. Hoping to bring the tumor back under control, Giaccone decided to put Kuykendall on another round of chemotherapy, a new mixture called carboplatin-taxol, typically used to treat ovarian and lung cancers.

Kuykendall had hoped so badly that he was finished with chemo and ready for the next stage of his battle. The physical torment made it more difficult to stay upbeat, but generally, Kuykendall still managed to keep his biggest fears at bay.

ABOUT THIS STORY: After receiving a diagnosis of thymic cancer, Shawn Kuykendall granted reporter Rick Maese, photographer Toni Sandys and video journalist Whitney Shefte unrestricted access to his treatment, family, friends and doctors.

“I don’t feel as captive by them,” he said. “I don’t feel as enslaved by them, if that makes sense. . . . Getting bad news doesn’t seem so bad anymore. It’s just sort of part of the process.”

Despite the setback, Kuykendall’s plan didn’t change — Please pray first and foremost that I can find an unparalleled peace from God through this, he urged his Facebook friends. He maintained a positive outlook. After all, he had his faith, he had his family and he had no qualms continuing his battle with his eyes closed.

Cancer might not hear prayers. But he was still confident God does.

 

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