If he weren’t so busy learning his fourth language and marshaling aid to refugees, Sean Kenney might pause and take stock of his own troubles. He might ponder his chronic vision, hearing and speech challenges. He might flash back to the long ordeal that began when a tumor popped up from his brain stem like a tulip bulb.
But as Kenney navigates the crowded neighborhoods of Beirut, he sees children begging on street corners and entire families huddled in abandoned buildings. He sees up-close the desperate plight of the 1.5 million Syrians who have streamed into Lebanon to escape the world’s deadliest ongoing conflict. Next to their burdens, his seem as light as the breeze off the Mediterranean.
“I get a lot of encouragement and energy from working with other people,” Kenney says. “It helps me put into perspective the struggles I have.”
At 31, Kenney already is a veteran world traveler and aid worker. He’s studied throughout Latin America, taught school in East Africa and worked with relief agencies in the Middle East. He now manages a Beirut-based program of Catholic Relief Services that provides assistance to refugees and migrants in Lebanon, as well as Cyprus, Jordan and Tunisia.
To his parents, who live nearly 7,300 miles away in El Paso, Texas, it’s no small wonder that Kenney can even live overseas, let alone speak other languages and traverse cultural boundaries as nimbly as a diplomat. They recall all too well the many trials their eldest son endured after his wavy blond hair was shaved for his first brain tumor surgery when he was just 3.
In that journey, however, Jody and Mike Kenney trace the origins of Sean’s current path: how he drew from his own suffering to help others facing hardships, how the compassion shown to him during treatment magnified his own innate kindness, how his love of speaking foreign languages harkens to a time he struggled to speak at all.
“He works with people who have had incredible struggles in their lives,” his mom says, “so in an indirect way, he understands what that’s like.”
Jody Kenney remembers how it all began. It was the summer of 1990, and the family had just moved to Memphis, where Mike Kenney was taking a job as professor at Rhodes College.
Sean had been throwing up in the morning once every several days, only to feel better later. When antacids didn’t help, Jody took him to the doctor.
The diagnosis that eventually came back was that the naturally upbeat youngster with blue eyes and an easy laugh had a juvenile pilocytic astrocytoma. It’s a rare type of brain tumor, generally benign or low-grade.
Doctors, however, attached a scary-sounding adjective — dorsally exophytic — to their description of Sean’s tumor. That meant it was growing outward, protruding from the top of the brain stem, and pressing against areas controlling breathing, swallowing and other functions.
If there was any upside to their situation, it was that the Kenneys had just moved to a city that’s home to St. Jude Children’s Research Hospital. Not only would St. Jude provide high-end care, it would cover all the Kenneys’ costs — a major relief for a young family that had no insurance because coverage under Mike’s new job hadn’t kicked in yet.
Ideally, tumors such as Sean’s are removed surgically. But as would often happen during his treatment, things didn’t go ideally. Doctors weren’t able to cut out the entire mass.
After the operation, Jody Kenney walked the halls of St. Jude and stopped to gaze at a wall containing the names of other child patients.
“At first I was angry — why did we have to be members of this club?” she recalls. “It didn’t take long for those feelings to turn into being so incredibly grateful that St. Jude was there.”
It was barely nine months before the tumor started growing again. St. Jude doctors told the family radiation was their only real option, even though it could cause cognitive problems in their son’s developing brain.
This was long before the arrival of more precise, less damaging radiation technology in the form of the proton therapy St. Jude now uses on many pediatric brain tumors.
For Sean, the radiation therapy remains a blur of memories of big machines and a nurse who drew pictures of Ninja Turtles on his hands. The treatment, however, somewhat stabilized the tumor without causing cognitive harm.
For the next eight years, the tumor seemed to fade in relevance as Sean returned to being a regular kid. He rough-housed with his two younger brothers. He played lots of baseball. He went hiking and camping with the family.
But during a routine checkup at St. Jude in the spring of 1999, just before Kenney’s twelfth birthday, doctors detected a reawakening of the long-dormant mass on his brain stem. With the tumor growing again, and with Sean unable to get more radiation because of the high doses administered years earlier, the family faced another grave choice.
A difficult surgery
Doctors told them a second operation — far more aggressive and invasive than the first — was needed. Their advisories about potentially severe side effects proved prophetic.
The surgery left Sean unable to swallow or speak. He suffered double-vision, along with respiratory and cardiovascular complications, and lost hearing in one ear.
“It was a little bit of a shock how debilitated he was,” Mike Kenney recalls.
Much of the collateral damage from the surgery proved either long-lasting or permanent. For two and a half years, Sean wore a tracheotomy tube and took meals through a feeding tube. He endured up to five rehab sessions daily.
Mike and Jody shuttled their son to various far-flung specialists: speech therapists in Kansas and Nebraska, cardiologists in Texas, swallowing experts in Illinois.
It should’ve been an agonizing experience for an adolescent boy, especially one so active. But Sean? His natural optimism, along with the support of his close-knit family, carried him through.
He and his parents and brothers celebrated each victory, each sign of progress, no matter how small.
“Every couple months I would do a barium swallow (test) on the X-ray, and there was just really small improvements….Every little positive step was a step in the right direction.”
Kenney’s speech came back slowly, aided by a prosthetic device called a palatal lift. It allowed the air from his diaphragm to pass through his mouth, not his nose.
His recovery complete, he went to college and pursued his passions — social justice causes, international relations and other cultures in general.
He studied abroad in places like the Dominican Republic and El Salvador. Impressed with the work carried out on behalf of the poor by the Catholic Church, he joined the Jesuit Volunteer Corps.
“Sean has this incredibly generous heart,” his mom says. “I like to think that’s because of us, but I think it’s also got to do with his experience at St. Jude.”
In the Jesuits, Kenney found a group embracing practices he’d seen at St. Jude. They cared for the whole person, not just one’s medical, nutritional or economic needs.
His work with the group took Kenney to places like Tanzania. He learned Kiswahili and tutored kids in mountain villages before teaching in a high school he helped establish.
After graduate school, Kenney went to work with Catholic Relief Services in Jerusalem, the Gaza Strip and other areas of the Middle East. In early 2018, he began managing the CRS program in Beirut dealing primarily with refugees from the Syrian civil war.
The heart of the refugee problem
In Beirut, Kenney is surrounded by contrasting scenes of past war damage and stunning beauty: abandoned, shell-pocked skyscrapers looming above the city’s flowering jacaranda trees and dramatic coastline, collapsed concrete structures framed by the distant mountains and cedar forests.
The culturally diverse, cosmopolitan feel of the city appeals to Kenney. And it’s not lost on him that he’s in the ancestral homeland of St. Jude founder Danny Thomas and the other Lebanese and Syrian immigrants who established ALSAC, the fundraising and awareness organization for St. Jude.
But the refugee crisis is nothing less than overwhelming.
Lebanon, which has seen its population swell from 4.5 million to more than 6 million, has the largest per-capita share of refugees of any nation in the world. The influx has strained the small country’s services and infrastructure.
Kenney’s job has him juggling what a colleague calls the “boring stuff” — emails, budgets and reports — with regular visits to the field. He helps a partner group, Caritas Lebanon, manage funding and allocate resources as it provides refugees protection, shelter, health care, and psychological and social support in addition to job training and education on life skills.
Sojourning into the dark heart of the refugee crisis, Kenney works with Caritas to promote protection standards in a government retention center that replaces a squalid, overcrowded facility located under a highway bridge. Inside, several hundred refugees and other people detained for lacking proper documentation are held in cells awaiting processing by security officials.
“Functionally, it’s a jail…,” Kenney says. “There are people there — they’re not criminals, by and large. They’re there because of circumstances in their lives that they wish they had more control over, but they don’t.”
The center presents scenes of desperation and vulnerability to which Kenney has grown accustomed. “It can be a bit frustrating seeing the extent of the problem.”
Every couple of weeks, Kenney travels high into the forested mountains outside of Beirut to speak with staff and residents at two ancient convents that have been transformed into shelters for victims of gender-based violence — a chronic threat facing refugee women.
“Sean is absolutely loved by partners as well as shelter staff,” said Katy Cantrell, director of programs for CRS Lebanon.
“He approaches everyone with respect and openness, and because he does that, people are willing to share their challenges.”
The work in Beirut has required Kenney to learn yet another language, Arabic. Every few days, he walks three miles across the hilly city, passing through neighborhoods in which English and French are spoken, to take Arabic lessons from a Syrian refugee.
“Everywhere I go,” he says, “I make a real effort to learn the language.”
Through it all, Kenney still carries physical burdens from the tumor treatment. That’s not surprising, given a St. Jude study released in 2018 that found that one-third of all survivors of pediatric central nervous system tumors require assistance for daily living.
Kenney doesn’t need assistance, but his soft palate — the fleshy, normally flexible area along the back of the roof of the mouth — remains paralyzed. He still wears the palatal lift to ensure his speech is clear.
In addition to the partial hearing loss, Kenney’s double vision persists, although, as he puts it, “I’m so used to it now, I don’t really know anything different.” And he has cardiovascular and respiratory complications, as well as sleep apnea.
“He’s a resilient guy,” says Sean’s dad. “These issues remain, but he’s moved forward.”
Forward, indeed. At his post in Beirut, the man who not so long ago couldn’t eat or swallow is literally savoring life now, relishing a rich Levantine cuisine that includes manousheh — a pizzalike breakfast dish — as well as fresh hummus, meats and bread.
He carries an athletic frame and broad smile, not to mention that effervescent optimism. He credits the tumor ordeal and St. Jude with helping him realize how precious life is, and how it should be lived to the fullest.
During his treatment, Kenney discovered that, like Danny Thomas, he’s inspired by St. Jude Thaddeus, patron saint of hopeless causes. His main memory of the hospital founded by Thomas is the hope it exuded for patients and families alike.
“That has always stuck with me,” he says. “Where the world sees a hopeless cause, there’s always hope.”
He took that hope and passed it on to others.
Kenney sees the same hope and faith among the Syrian refugees. Despite the conditions they face, their cries of Ahamdulillah (“Praise be to God”) and Inshallah (“If God wills it”) continually echo through the narrow streets of Beirut.
“They’ve all overcome a lot of challenges and are truly resilient people,” Kenney says.
He’s referring to the refugees, but he very well could be describing himself.