How one man recruited his friends and made more friends and changed the lives of cancer patients and their families forever
By Jenni Laidman
This story was originally published in 2019 in Louisville Magazine. The City and Regional Magazine Association named it the best feature story in its circulation class in its 2020 national awards.
One boy dances. Around him, ball-capped and bearded men shake hands and banter. The women wear shorts, blue jeans, earrings, running shoes, strappy sandals, and they’re all talking or laughing or shouting. People nosh on pretzel-crust pizza or quesadillas or wings. They order beer by the bucketful, and their voices grow louder. Toddlers look around with big eyes, or make faces at a brother, or tap, tap, tap an adult shoulder. A woman in a tank-top stands to beckon friends. A man with a tanned and shining dome hunts for a place at the bar. And a 30-something in ankle-breaker heels weaves through them all, hefting a crate of canned goods. No one watches the dancing boy. He’s off to the side, out of the way, tick-tocking his arms like twin pendulums, hips swinging in the opposite direction, over and over, a joyful moment of dancer’s hypnosis. It’s hard to hear any music in this tumult, but the kid in the dark T-shirt and track pants keeps dancing, a human metronome in his own happy place.
This is Monday night, July 30, 2018, at Khalil’s in Valley Station, a popular South End sports bar and restaurant shoehorned into an undistinguished Dixie Highway strip mall that doesn’t even have its own name on its sign. About every third person who passes Khalil Batshon, the 32-year-old owner, greets him. They call him Charlie, the name he went by until college. Eye-to-eye, Batshon is boyish, with warm dark eyes — at a distance, he looks older with his black goatee and square build. He sprinkles his conversation with positive sayings. Tonight, perhaps because his Monday business is breaking records, he says, “My pastor at church says you got to learn how to receive.”
Later tonight, Batshon will pick up a blade. The room will fall still, waiting to see what happens next. It’s the ritual everyone is here for, holding their breath and hoping to hear their name called. Wes Faust, who works for a credit card processor, is riveted and he hasn’t even bought a ticket for a shot at the money. So is Frankie Story, branch manager at American Mortgage on Dixie Highway, who livestreams the moment to Facebook. Doodle Farris of Farris Plumbing and his buddy Scott Wright of Wright Mechanical, they’re always here. But all that is a few hours away.
The dancing boy suddenly stops, looks around, and races after a tall, bearded guy wearing a black T-shirt that says “Cancer Sucks!” — he’s always wearing something that says “Cancer Sucks!” This may be Batshon’s bar, but the big guy with the close-cropped salt-and-pepper beard, who couldn’t do small talk if you handed him a script, started the party. And he’s been starting one every Monday for weeks. July 30, 2018, marks week 14. His sister Donna Wilkins says, “My brother has the biggest heart. Just like my mom.” Her brother drapes his arm around the dancing boy and heads to the stage. The man’s name is Mike Mulrooney. That’s his youngest child, Graham, beside him, the kind of kid who worries about homeless people he sees on the street. Graham’s grandma Shirley was like that. So is his dad, who cries during movies. “My wife, Jenni, will look at me: ‘Are you all right over there?’ I’ll be the one blubbering.”
Mulrooney’s friends from his Pleasure Ridge Park High School days say that when Mulrooney saw some kid eating by himself in the cafeteria, he’d invite the loner to come sit with him and his friends, the PRP football team. “I don’t like seeing people by themselves,” Mulrooney says. “I just really don’t, ’cause I feel like everybody needs a friend, and if they’re sitting there by themselves, they probably don’t have anybody to hang out with.”
It’s an inheritance of tender hearts. It’s why Mulrooney is here tonight, why he does what he does: turning his South End friends into a volunteer army called Shirley’s Way.
Summerlynn Smothers was five years old when the vomiting started. It was 2013 and she was in kindergarten at Eisenhower Elementary School in PRP. The doctor blamed nerves, saying she probably just missed Mommy. Later, when she threw up in the car, her parents thought it could be motion sickness. Then the lymph nodes under her chin grew swollen and hard. Spring allergies, the doctor decided. Later, the pediatrician said strep throat and prescribed antibiotics. Then a lymph node at the base of her neck on the right side popped out. Stronger antibiotics would fix it, he said. By mid-May, Summerlynn was still sick. A test for mono was negative. So it’s a virus, the physician ruled. Then in June, about two weeks after Summerlynn turned six, another hard, swollen lymph node popped on the other side. John and Ruby, Summerlynn’s parents, who were in their mid-20s, were frantic, insisting on more testing. Everything came back negative. So the physician sent the family to Norton Children’s Hospital downtown for a workup. They were told to report to 7 West. “They didn’t tell us that 7 West was the cancer unit,” John says. The family read it on the ward sign.
The next morning they learned that their little girl had T-cell acute lymphoblastic leukemia, known as T-ALL. Physicians tabulate the success of cancer treatment by the percentage of patients alive five years after diagnosis. The five-year survival rate for this form of leukemia in children is pretty good, at more than 90 percent, according to the National Cancer Institute. But nothing prepared the family (including son Hayden, eight at the time) for what followed. Sitting in their small living room a half-mile from Dixie Highway, Ruby Smothers says, “Even to this day, I think: How did we get here? We had such a normal life, and then all of the sudden….”
Kentucky has the highest cancer rate in the nation. In fact, if Kentucky were a country, it would have the highest cancer rate in the world. (Australia is No. 1.) Another dreadful “We’re No. 1”: Kentucky leads the nation in lung and colorectal cancer diagnoses and lung cancer deaths.
States with more people may have more cancer cases, but no state has a greater percentage of its citizens with cancer. To compare populous states like California to nearly empty states like Wyoming, statisticians calculate how many cancer cases occur in each state for every 100,000 people. A 2019 American Cancer Society report showed Kentucky men and boys were diagnosed with cancer 570 times for every 100,000 people. That’s almost 75 cases higher than the national average of 495 diagnoses per 100,000. Women are less likely to get cancer than men, but the Kentucky rate remains heartbreaking and worst in the nation. Among Kentucky women and girls, there are 469 cases per 100,000 — 40 cases more than the national average. Imagine the entire population of Paducah, almost 25,000 people, all diagnosed with cancer. Every year. That’s how many males we’re talking about. To add females to this scene, diagnose everyone in Ashland, a town of 21,000.
And it looks more depressing when you consider cancer deaths. Only in Mississippi do more men and boys die from cancer. Kentucky women lead the nation in cancer deaths. Taken together, the number of people who die from cancer in Kentucky would wipe out a city with a population just shy of St. Matthews’.
A bearded guy with a blue University of Kentucky shirt walks up to the table just inside Khalil’s front doors. “I want 49!” he says like a man planting a flag on a new continent. The women running ticket sales look at him evenly. Frankie Story tells him, “You can’t have 49.” But he is insistent. “Whoever picked it, I’ll buy it from them!”
“It’s too late,” Story says. Somebody chose 49 a few weeks ago. Lucky it wasn’t him. Forty-nine was a loser. UK shirt doesn’t like the answer. He wants to know who’s in charge here. Story, with short blond hair and a fair complexion, is formidable at almost six feet tall. She’s also funny. “I’m the boss,” Story tells him, waving her arms as she gains steam. “I’m the boss of the whole world!”
Story knows there’s no time for drama at the ticket table. The line is backing up out the door, and ticket buyers with armloads of canned goods and $20, $40, $100 worth of $2 tickets are crouched over the table scrawling their names, contact info and lucky number on each ticket individually. Handwriting is what the law requires. Penmanship suffers.
By a little after 7 p.m. on July 30, every seat in Khalil’s is taken. A constant parade of chair-free patrons circulates through the restaurant like blood squeezing through sclerotic arteries, clotting along the wall to the kitchen, snagging at the far end of the bar and eddying around the giant blackboard in the back until they’re spit out again by the need for a beer, or a trip to the restroom, or a glimpse of someone they haven’t seen since high school.
Frankie Story knows there’s no time for drama at the ticket table.
The blackboard they hover near is classroom-size, but no classroom chalkboard ever won such attention. Last week it read $38,296 — the crowd loved that. Brisk ticket sales put the amount just above $40,000 by noon today, which brought in even more bettors. The new total reads $43,796, feeding the buzz sweeping the room. If someone wins, they’ll take home half the night’s total. If they’re not here, they get 40 percent. Near the blackboard, Mike Mulrooney’s dad, Mike Sr., turns the crank on a steel-mesh drum filled with this week’s tickets.
The drawing is called the Queen of Hearts, and the rules can be a little confusing for first-timers. Basically: Can you guess which of the 54 cards is the queen of hearts? A locked glass case beside the chalkboard holds the cards, numbered one through 54 (two jokers included), face down, sealed in plastic. For $2 you can choose one of those numbers and write it on a ticket, and there’s no limit on how many tickets you can buy. One ticket is drawn each week. If one with your name on it is pulled from the barrel, the Shirley’s Way team flips the card that corresponds to your number. You only win the money if the card that’s unveiled is the queen of hearts. Not the queen of hearts? That card and its corresponding number are now off the board for future weeks. This week, 13 cards are face up and cannot be played, including No. 49 (the six of clubs from a week or two ago). If nobody wins, all the tickets are thrown away and the betting starts again for the following week. And here’s where it gets interesting: The money accumulates from drawing to drawing. Every new ticket purchase adds $2 to last week’s pot. It adds up quickly.
By 8:17, Batshon shrugs his way through the crush to grab the mic. “Let’s sell another $200 worth of tickets!” he says. One hundred and two tickets would take them to a $45,000. Wendy Barker, a roving ticket seller, stops to make a wish. “I want to see it go to the last day,” she says, meaning the queen of hearts would be the final card revealed. “I want to see it go to $100,000.” The amount seems impossibly large.
At 8:26 p.m., four minutes from the drawing, Mulrooney is at the mic. Ticket sales are closed. Someone has erased the dollar figure on the chalkboard. “Where are we at, Kim?” Mulrooney asks the woman holding the chalk. She shrugs. “Get ready to write the total down.” Men and women carry plastic jars of tickets shoulder-high through the crowd, emptying the contents into the drum before it’s closed for the last time. Mike Sr. turns the crank and the tickets tumble. Someone ushers a little girl in a long blue dress to the back of the restaurant to draw tonight’s ticket.
“Hold on! Hold on! Hold on!” Wes Faust’s voice rises above the din. Six minutes earlier, Shane O’Keefe brought ticket sales to a close. Now, standing onstage behind Mulrooney, he raises his arm to stop the drawing. The girl in the blue dress stands back. Faust rushes through the crowd, a ticket jar above his head, and dumps the last few tickets into the drum. They somersault into the mix as Mike Sr. begins turning again. The new total goes up on the chalkboard: $45,184. The crowd bellows.
Stop here, just for a minute, and notice something. Faust, vice president of Shirley’s Way, who can talk to anyone about anything, has known Mulrooney since grade school. O’Keefe, who keeps track of the money on these Monday nights, is Mulrooney’s neighbor, but they’ve also known each other since they were kids. So many people in this crowd have known Mulrooney for years, sometimes decades.
“I work with Mike’s wife, Jenni.”
“I’ve probably known him for like 30 years.”
“I played softball with Mike years ago.”
“I’m friends with Mike Mulrooney, and I used to do his mom’s nails.”
“He coached my daughter.”
“I did a job for Mike and found out that we have a million mutual friends.”
Mike Sr. thinks he knows what’s going on here. “This could only happen in the South End,” he says. Maybe. But it’s probably less geography and more like six degrees of separation — or actually, one or two degrees — in action. The power of networks. The power of friendship. The wheel of connections created by one guy who couldn’t stand hearing sad stories: Mike Mulrooney.
The barrel stops. The little girl in the blue dress looks at the ceiling and reaches deep into the drum. She draws a ticket that travels hand to hand to Mulrooney, who stands with his arm around Graham. Batshon unlocks the case of cards. Mulrooney reads the name on tonight’s ticket, followed by the number — 21. Batshon picks up a blade. The crowd grows quiet. He slices the plastic around card No. 21 and flips it over to reveal — a 10 of diamonds.
The cheering is the loudest of the night.
“So it carries over to next Monday!” Mulrooney yells. “You can start buying your tickets now.”
Mike Mulrooney, now 49, never thought about cancer until his mother, Shirley, was diagnosed with liver cancer in 2011. “I really didn’t anticipate anything coming from it. You just don’t think that today somebody should die from cancer,” he says. In fact, when a doctor told the family that Shirley’s treatment options were limited and the prospect for recovery dim, Mulrooney got mad. “I didn’t believe him,” he says. “I told him he didn’t know what he was talking about.”
Mulrooney put out a call on social media looking for another oncologist, and the family ended up at James Graham Brown Cancer Center, where physicians sounded far more optimistic. But the cheer wore thin as the months rolled on. “Treatment after treatment after treatment and we weren’t gaining anything,” he says. Each new approach seemed like a guess, an experiment. Maybe this will work. Maybe that will. “Finally, one day the doctor walked in and he said, ‘There’s nothing else we can do,’ and turned right around and walked out. And we’re just standing there.”
Shirley Mulrooney came home to die. And that’s when the truth about having cancer in America came home to her son.
Shirley was the type to cry at sad movies and put her hand over her mouth in distress when a tragic story hit the evening news. Nearly every kid who attended St. Paul’s Catholic School on Dixie Highway remembers her from her years as a bus driver, before the school eliminated buses and she went to work for Humana. People knew her from St. Paul’s Catholic Church, where she was a lifelong member. They knew her through her three kids, Donna, the oldest, Mike in the middle and Lynn, the baby. “She was always cooking for people. If someone was sick, she’d take them soup,” Mike Mulrooney says. “She would make cookies and take them to the neighbors.” Carrot cake was her specialty. People asked her to bring it to family events. She liked to go to funerals and talk to people. “She was the mom of the ’60s and ’70s, the Beaver Cleaver-mom type,” Mulrooney says. So as she grew sicker, everyone wanted to visit. And the visitors told stories.
Mulrooney couldn’t believe what he was hearing as he ushered guests out of his mother’s room, trying to protect her from hearing anything bleak. “They were telling me of friends and family that had cancer or some other life-threatening disease, and they couldn’t work, and couldn’t pay their bills,” he says. Visitors talked about friends choosing between life-saving medication and food, between paying a medical bill and making a mortgage payment. They talked about homes lost and treatments skipped because it all cost too much. How could this be? Mulrooney couldn’t stop thinking about it. All that money raised for cancer research — millions in tax dollars and donations — and people had to go broke to reap the results of what their taxes had, in part, made possible?
For two years Shirley struggled with an illness that made her son wonder why God would let a church-going woman who took care of others suffer so. She died March 5, 2013. She was 63.
As her body was wheeled out to the hearse, Mulrooney leaned over, kissed her on the forehead and made a silent promise. “I didn’t know what we were gonna do,” he says, “but I promised her we would do something.”
Summerlynn’s initial treatment failed. What was to be a week in the hospital stretched into a month. Her dad, John, missed work several days to be at the hospital with his wife and daughter. The couple tried to keep up with a confusing round of discussions about Summerlynn’s care. They hardly knew what to think. One doctor advocated more aggressive therapy; the other doctors outvoted him. The doctors asked the parents, “What do you think?” John was taken aback: “Well, I think you have the medical degree, so we’re going to go with the majority.” It’s a decision they’d come to regret. Still, by September 2014, Summerlynn’s cancer was in remission. They hardly had time to celebrate when, in October, a round of high-dose chemotherapy damaged Summerlynn’s kidneys. What was supposed to be a day in the hospital stretched beyond a week. Among the kidney’s many duties is the regulation of blood pressure. Summerlynn’s was elevated, so she was put on blood pressure medicine. She was six years old.
Her doctors said the next best step was bone marrow transplantation, which uses radiation and high-dose chemotherapy to wipe out the faulty blood-making cells in Summerlynn’s bone marrow. Those would be replaced with donated placenta/umbilical cord blood cells, which would rebuild her immune system and blood supply. After a quick consult at Cincinnati Children’s Hospital Medical Center, where doctors agreed that a transplant was the way to go, the family went forward with the procedure at Norton Children’s.
It began the worst year yet in the life of this small family.
Although Summerlynn was scheduled to begin stem cell treatment Jan. 15, 2015, problems with her lungs delayed the process until March 3, when she finally began the regimen that would destroy her immune system and blood-forming cells. On March 12, she received the new cells, and a month later, she was back home. But there was little sense of victory. Not only did she test positive for a “superbug” called carbapenem-resistant Enterobacteriaceae — a difficult-to-treat and often deadly bacteria that doesn’t respond to most antibiotics — she was plagued by viruses and other infections that kept the family running back to the hospital. By July, her condition had so deteriorated that she was admitted to Norton Children’s for what turned out to be the rest of the year.
And it got worse. She developed a pair of blood-related disorders associated with transplantation, each of which caused life-threatening blood clots. Ultimately, the clots destroyed her kidney function, and by the end of August, she was on dialysis thrice weekly. The disorders caused fluid to build up inside the sac that holds the heart and lungs. The pressure collapsed a lung. The clotting covered her in bruises. Her arms were matchsticks. She couldn’t walk. She could hardly sit up.
On Oct. 11 Summerlynn’s mom asked a friend to stay with their daughter in pediatric intensive care so they could have a special 10th birthday with Hayden, who had been living with his grandparents through most of this. Throughout the day, the friend noticed Summerlynn was unusually quiet. The friend was worried, even though the medical staff told her it might be the results of sedation the day before, or due to throat pain from a recent bronchoscopy. When Ruby returned to the hospital later that day, Summerlynn wasn’t talking. Instead, her eyes roamed the room, back and forth, back and forth, tracking nothing.
“Something is really wrong,” Ruby told the medical staff. They tried to reassure her. Finally, she called 7 West and asked a nurse who knew Summerlynn to have a look. Two 7 West nurses confirmed that this child was not at all herself, but a CT scan revealed nothing. Summerlynn remained immobile and weirdly silent. She was barely blinking. The following morning, an oncologist ordered an MRI and other tests. The odd eye movements were seizure symptoms. The MRI showed something on her brain. Her spinal fluid was bloody. Together these added up to an immune system in revolt with another life-threatening disease called hemophagocytic lymphohistiocytosis. It had turned her immune T-cells and natural killer cells into enemies, and they were laying siege to her brain.
When Summerlynn finally pulled through — she didn’t speak again until Halloween — she was a different child. “We say she went away,” Ruby says. “Wherever she was for that amount of time, she came back different.” This was a kid who would shoot marshmallows at the nurses who visited her in isolation. “She was always dancing around, acting goofy,” John says.
The month after Summerlynn’s transplant, John lost his job. At first, he’d taken advantage of the Family Medical Leave Act, which provides up to 12 weeks of unpaid leave while protecting the worker’s job. But when those three months ended, little grace remained. The company where he worked almost 10 years let him go. The family was already in debt. The medical insurance John purchased through work for $100 a week had never been adequate, carrying an annual $5,000 deductible and copays. They couldn’t keep up: mortgage payments, car payments, utility payments went unpaid. Then there were the medical bills and the prescriptions Summerlynn needed to live.
If work had no grace for the Smotherses, the South End did. A woman they didn’t even know named Jessica Stottman heard about Summerlynn and sponsored a yard sale for her. The woman lives on Mike Sr.’s street. Mulrooney saw what was going on and gave the woman a check for the family. And then he really got involved.
“They paid our house payment for a year,” says John, who now works at Ford. They made sure Summerlynn had all her prescriptions. They gave the family gift cards for Panera, the grocery store and Papa John’s. “They made sure we had presents for the kids for Christmas,” Ruby says. “If Summerlynn’s birthday was coming up, they made sure she had gifts to open. Last year (Mulrooney) showed up at our house; he found out everything she wanted to do for her birthday” — dinner at the Outback Steakhouse, a visit to the Build-A-Bear Workshop — “and he came with gift cards for all of it.
“We wouldn’t have our house if Shirley’s Way hadn’t stepped in,” Ruby says.
“They covered everything, basically,” John says.
When Mulrooney was still a student at U of L pursuing a degree in business management and working nights at UPS, he started a computer business. It was a surprising decision for a guy with no interest in or knowledge of computers. It was an even more unlikely choice because the former PRP classmate who suggested they go into business together wasn’t really anyone Mulrooney liked much. Mulrooney just happened to run into him at the grocery store and they got to talking. And, to make it a trifecta of cockeyed ideas, the business plan depended on a third guy who wouldn’t be a partner, even though he was the only one who actually knew anything about computers. The third man would do the repair work. This was in the early 1990s. While today you need not know much of anything to own and operate a computer successfully, in the 1990s, you made a commitment to at least glancing knowledge of what lurked under the plastic cover of your big desktop machine. Mulrooney knew less than that. “I didn’t even know how to load Windows on a computer,” he says.
So of course the two men signed a one-year, $900-per-month lease on a Shively storefront, and River City Computers was born. And almost died. Two weeks after they opened, the guy with computer knowledge split. “It was mess,” Mulrooney says. While his partner took on the sales side, Mulrooney bought every book he could find about computers and started reading. He also dropped out of school. (It would take him 10 years to earn his degree.) “People would come in and say, ‘Oh, I got to have the RAM updated,’” he says. “I’d go to the library trying to figure out what RAM was, what ROM was, and hard drives….”
Then he found a lifeline. Several actually: 800 numbers. “Back then, you could call an 800 number on any computer, and they would walk you through stuff,” he says. “I’d call the 800 number and act like I knew what I was doing. ‘Hey, I got some memory I’ve got to put in this machine, and for the life of me, I can’t see where it goes.’” While he kept reading and learning, he forged connections with technical-assistance departments at every major personal computer company. “I had relationships with these people on these 800 numbers, and they would know me when I’d call,” he says.
With a combination of native intelligence, a willingness to work and an ability to make personal connections, Mulrooney created a career in technology — a field infamous (in myth at least) for attracting the socially stunted. Because of it, the partners renewed the lease on their storefront for a second year. Today, Mulrooney works in IT for Brown-Forman. And he’s still making connections.
In her black dress with peek-a-boo shoulders and her mother’s gold hoop earrings, Kellye Duckworth may be the most elegantly attired woman in Khalil’s on Nov. 26. A few hours earlier, she wore this to her mother’s funeral. At noon, they buried Patty Fields right across Dixie Highway in Bethany Memorial Cemetery. From the cemetery the family could see the Gene Snyder Expressway and a Miller Lite truck making its way west, fulfilling Patty Fields’ prediction that, when she died, there’d be a procession of Miller Lite trucks to mark her passing.
Now the cousins, aunts and uncles are buying Miller Lites in her honor. They slowly make their way through the throngs jamming Khalil’s, heading to the stage area. At 6 p.m., it’s too late to hope for a seat. By the time the family has hugged everyone they know and waited for a clear path, the better part of a half-hour has passed. The place is a madhouse.
All day things have been popping at Khalil’s. At 10 a.m., ticket buyers began streaming in to buy Queen of Hearts tickets — 3,000 sold in two hours. Around 3 p.m., people started occupying tables for friends and family who couldn’t get out of work early. By 6 p.m., finding parking is near impossible. A few desperate people pull in at Cracker Barrel nearby — a practice that soon brings towing threats. Near the stage, Mike Sr. cranks a new ticket drum, this one Plexiglas, the barrel about three feet in diameter. It can hold 30,000 tickets. The old steel-mesh unit can no longer handle weekly ticket volume. That one was actually the second drum the Queen of Hearts raffle has used. They never expected to outgrow it. But they’ve outgrown everything — and even, almost, Khalil’s. By mid-October, people were watching the drawing from their cars in the parking lot because they couldn’t get in. So when the little thrift shop next door went belly up, Khalil’s expanded. They cut a doorway between the two spaces, spruced up the addition, put up a long table for ticket sales, and, presto, 100 more seats. The new room lacks the ambiance of the main dining room — no dark walls, no bar signs, no lineup of televisions. It looks, instead, like a fine place for a church supper. But 10 bucks guarantees a buffet dinner and seating. And something else is different tonight. Many tables are covered with growing drifts of paper scraps — the remnants of $1 pull-tab games Mulrooney says aren’t much of a moneymaker, though customers like them to pass the time.
The real attraction remains the chalkboard, which has reached $360,612. As 8:30 approaches, Mulrooney takes the stage and directs the crowd’s attention to Duckworth and her family standing shoulder-to-shoulder in front of the stage. “Raise a glass,” Mulrooney tells the crowd.
Raise a glass to Patty Fields. Patty Fields, the life of the party, the longtime bartender at Tumbleweed in Shively. “Pattilicous,” her friends called her. “The funniest person I ever met,” her own sister says. Patty, the main wage earner and mortgage payer for her little family. Patty, whose family nearly lost everything when she was diagnosed with stage 2 pancreatic cancer.
Although Fields didn’t have health insurance and couldn’t work after her diagnosis, at first she found help: food stamps, disability income and Medicaid. Then the government changed its mind about the food stamps because 18-year-old Kellye Duckworth’s two-day-a-week job as a Tumbleweed server brought in too much money. And then Duckworth was told she’d have to move because her income threatened Patty’s Medicaid eligibility. Then a nearly $50,000 balloon payment came due on Fields’ home loan. Then — actually, right after food stamps began and the family had its first full fridge in forever — the refrigerator gave out with everything in it. “And the next thing you know, we get a thing in the mail, a little letter from Mike and a hundred-dollar gift card from Kroger,” Duckworth says. Shirley’s Way covered several thousand dollars in house payments. It paid for good secondhand appliances.
Duckworth, then a student at the University of Louisville, had planned to marry in 2019, after graduation. But as her mother’s illness worsened, she and Drew Duckworth moved up the date by a year. The high school sweethearts were married June 2, 2018. Patty died Nov. 21. Shirley’s Way sponsored a fundraiser so the family could buy a headstone.
If you were treated for cancer in 1995, it took about $54,000 to keep you alive for a year, a study published in July in the Journal of Surgical Oncology reports. In 2013, that year of life costs almost four times as much — $207,000. There’s no published data on what a year of cancer care costs now, six years later. You can bet it hasn’t gone down.
The cost of cancer care is not only growing, it’s life-threatening.
Drug pricing is part of the problem. When the U.S. Food and Drug Administration approves a new drug, studies show companies base the price on drugs already on the market — plus 10 percent to 20 percent. In 2012, 11 of 12 new cancer drugs approved by the FDA cost more than $100,000 per year. There’s no overall data on what new cancer drugs cost today, but one website that covers the pharmacy market reported that a new drug for lymphoma has a U.S. list price of $373,000. The list price for its use in acute lymphoblastic leukemia in children and young adults is $475,000.
After a new drug launches, the Surgical Oncology authors report, its inflation-adjusted price rises about 5 percent a year. The price goes up again — typically another 10 percent this time if the FDA approves its use for another form of cancer. The only time the cost goes down is if the FDA OKs a competing product. But the drop is only 2 percent.
And drugs are only part of the picture.
Hospital costs, this study found, account for 48 percent of the total medical bill, compared with, say, the 16 percent share going to chemotherapy.
An astonishing number of people faced with the cost of cancer lose everything. An October study in theAmerican Journal of Medicine reported that more than 42 percent of people diagnosed with cancer from 2000 to 2012 wiped out their life savings in two years. That’s more than four million people, and this study looked only at those age 50 and older.
When the cost of cancer care hammers patients and their families, it’s called financial toxicity. Financial toxicity is most often a disease that hits young people, women, people of color, people who live far from treatment centers and the unemployed. Younger people are vulnerable because they’re often under-insured, have lower-paying jobs and have higher non-medical expenses, such as child care. Their cancers are also treated more aggressively, and that’s more costly. Although the burden falls hardest on the uninsured, deductibles and copays overwhelm even some insured cancer patients.
Patients who face financial hardship are more likely to delay or skip treatment. They miss car payments, utility payments, meals, tuition. Bankruptcies increase. Cancer patients are 2.5 times more likely to declare bankruptcy than their peers. A study of 900 bankruptcies published earlier this year in the American Journal of Public Health showed illness-related expenses — both the cost of care and work lost during illness — were important contributors to two out of three bankruptcies. Who’s filing for these bankruptcies? Often it’s middle-class people with health insurance. And here’s a chilling fact: Those driven to bankruptcy have twice the risk of dying compared with cancer patients who avoid bankruptcy, theJournal of Surgical Oncology reports.
This doubled risk of death hits no matter the type of cancer involved or how early it’s caught, a study in theJournal of Internal Medicine reports. The financial burden functions like a diagnosis for a second deadly disease atop the cancer. Not only does cancer kill, so does the cost of treating it.
Spencer Moorman knows what this looks like. She sees it in the eyes of the moms and dads she talks to every day. Moorman is a social worker with University of Louisville Physicians Pediatric Cancer and Blood Disorders. She works with the families of cancer patients in Norton Children’s Hospital. It’s her job to try to catch these families before they fall, to hook them up with resources, to make sure they can get their car fixed to get to treatment, can pay their rent so they don’t end up homeless, can keep the lights and water on and buy groceries. It’s often a frustrating scramble.
“There are so many needs that it’s overwhelming,” she says. “It’s beyond comparison for those who haven’t lived it, but we’ve seen families who were hardworking and middle class who then lost their homes because of the cancer diagnosis.”
Although nonprofits exist to help cancer patients, most have broad restrictions on who they will help, Moorman says. Some organizations help only people with one type of cancer, or in one part of the country, or at one stage of diagnosis. Many require families to fill out complicated applications, submit W2s and paystubs and photographs and a letter at a time when families are already overwhelmed by what they have to deal with every day.
Then, about five years ago, Moorman heard about Shirley’s Way. Although at the outset Shirley’s Way found patients through friends, today families who need help apply through hospital social workers, who help determine real need. “Shirley’s Way has been such an invaluable resource because they make it easy,” Moorman says. “They do require certain forms to be filled out, but it’s not this intensive process that other organizations might require.” Oncology social workers all over town tell the same story: Shirley’s Way is a game-changer.
It’s after dark at Sportsdrome Speedway in Jeffersonville, Indiana, Aug. 18, 2018. As one race ends and the Dopplering whine of cars on the figure-eight track vanishes, Scott Wright resumes talking about the car he and Doodle Farris built from nothing. It gleams under the work lights, sleek black with red-orange 48s painted on the doors, the numbers leaning rearward, caught in the wind of anticipated speed. There isn’t a piece of metal or a part on this car that Wright and Farris haven’t handled, right down to the twin “Cancer Sucks!” Shirley’s Way logos on either side of the hood. All over the track, cars display the logo, maybe 20 of the vehicles racing tonight.
Wright and Farris, who put $50,000 into the car, don’t keep their winnings. They give it all to Shirley’s Way. “You don’t make a ton of money doing this,” Wright says. “So we kind of have fun and help out.” Part of their inspiration is Wright’s father, Tom, who died of leukemia about nine years ago. Tom Wright got the two started in racing, back when they lived across the street from each other and raced go-karts. Now the racers have turned their competitors into Shirley’s Way believers, a few of them also donating at least some of their winnings to Shirley’s Way. “Most have been affected by cancer, so they all know,” Wright says.
Before the Queen of Hearts, Shirley’s Way survived solely on things like this: interested friends, glow-in-the-dark golf scrambles, small concerts with local musicians, poker runs, T-shirt sales and several 5K races, along with the sponsorship of a few South End businesses: Wright Mechanical, Leanhart Plumbing, real estate agent Diana Davis, Plumbers Supply and MaxCare Professional Cleaning Systems. Although Shirley’s Way now has three part-time employees — handling most of the paperwork, patient advocacy and Shirley’s Way merchandise — everything else is volunteer-powered. On Queen of Hearts nights, no fewer than 15 volunteers swing into action. Even with the volunteer army — and each board member takes responsibility for a fundraising event, too — Mulrooney still has to go out out a few nights a week and sometimes during the day for Shirley’s Way. “I got a family to take care of, too, so it gets a little intrusive, but I enjoy it,” he says. (In addition to Graham, 10, he has two daughters: Kayden, a sophomore at Atherton High School, and 12-year-old Addie, who attends Notre Dame Academy.)
What the organization lacks is big donors. For all his connections, Mulrooney has no rich associates, no influence with a charitable granting agency, no national sponsorships. All those things are on his wish list, but he’s still figuring out how to do it. “We got to find a money tree somewhere,” he says.
Vicki Guffey and her family are at Khalil’s on Feb. 4, 2019, for what has become a family ritual since Queen of Hearts was three weeks old. Her husband Will arrives at 3 p.m., saves two tables in the new room, and spends the afternoon visiting with neighbors and playing pull-tab games. By 7:30 p.m., every table in the extra room is full and people bustle to the buffet to fill their plates. Yet compared to the main restaurant, it’s a church service in here. Out there, beach balls bounce like frantic punctuation, batted from table to table as the wait staff tries to find a path through the melee. Khalil Batshon takes to a bullhorn: “Clear the aisles! Clear the aisles!”
The total on the blackboard tonight is up above $700,000.
Mike Mulrooney, Miller Lite in hand, looks around the room. “It’s insane,” he says. He’s getting a weird vibe. “I’ve been thinking about it all day. I really just have that odd feeling it’s going out tonight.” A woman standing nearby overhears and hollers, “Yeah! And I’m gonna win!”
To the Shirley’s Way team, it sometimes feels like the rest of the city is sleeping through the excitement and the urgency. By the end of 2018, the South End organization had donated $563,000 to cancer patients since 2014, helping some 209 families all over Metro Louisville and a few beyond. Because of Queen of Hearts revenue, most of that giving — $287,635 — took place in 2018. Queen of Hearts participants have donated blankets, cases of food, personal care items, peanut butter and cheese crackers for school teachers to give to hungry students, books, pet food and winter coats. They’ve given so much they filled Southwest Community Ministry’s food pantry. Support for Shirley’s Way is strong in the South End. Up and down Dixie Highway you can see “Cancer Sucks!” bumper stickers in every parking lot. You see support at Timmy’s Auto Wash, at Christie’s Cafe, at Thornhill’s Batting Cages. Wright Mechanical displays the logo on all of its trucks.
On this night there’s a new sound, a mix between an airplane taking off and a machine gun’s rapid fire. It’s the new ticket drum. Queen of Hearts outgrew its Plexiglas drum last week, and the metal fabricators at Carrier Vibrating Equipment Inc. built and donated this new steel monster, complete with the Shirley’s Way logo painted on the front. Batshon now works the crank on the drum, throwing his whole body into it as Mulrooney addresses the crowd.
“Today’s World Cancer Day,” Mulrooney says from the stage crowded with people. Volunteers hold up signs for the sponsoring businesses. Mulrooney continues: “I don’t know what you do on World Cancer Day. It’s not something I want to celebrate, but what we’re gonna do, if you’ve got a drink — if you’re drinking beer, whiskey, whatever you got — hold it up for me real quick.”
The crowd hoots while around the room the beer glasses and bottles rise like torches, amber ornaments in the TV screen light.
“Here’s to World Cancer Day!” Mulrooney shouts. “On three, cancer sucks.”
“Cancer Sucks!” they holler.
“Amen,” Mulrooney says.
A few miles away, Summerlynn Smothers, now 11, is at home, trying out new jobs on PlayStation VR. Chef is her favorite virtual-reality profession — and she likes to cook in real life too. Life will soon be a bit easier as her parents learn how to administer peritoneal dialysis at home, eliminating the nuisance of regular trips to a dialysis center. All over the city, people are whole because of Shirley’s Way. Tammy Hart, with stage 3 colon cancer, still has her apartment, and on good nights can still see the local bands she loves. Jeff Williams, a nurse and the former drummer with Naked Garden, can help raise his daughter, two-year-old Cathreen. Allan Loney, who lost the love of his life, Elaine, to breast cancer in 2017, and lost his job during his wife’s long treatment, was able to keep his house for his children.
By 8:20 p.m. ticket sales have ended. The blackboard reads $773,800. Mulrooney keeps glancing at his watch, waiting for 8:30. Back in the buffet room, Vickie Guffey says that if she and her husband win, they’re taking the family to Disneyland. Anna Settle, a teacher and Guffey’s daughter, says she’ll buy a house or pay off her student loans. Amy Sturgeon, out front of Khalil’s where the smokers gather, has been coming to Queen of Hearts for only three weeks. She usually bets $20. Tonight, she splurged at $30. “That’s all I had — my last dime.” Ashley Mattingly, 22, buys 40 tickets every week. If she wins, she might buy a new truck. “And I want to give back,” she says.
Mulrooney checks his watch again, just as Batshon opens the ticket drum. Batshon hesitates at the open door as Mulrooney shouts, “Thirty seconds!” Mulrooney keeps his eye on his watch, beginning the countdown at 10 seconds. “Nine, 8, 7…come on!” The crowd finishes with him.
“Let’s draw this ticket!” Mulrooney shouts.
Without fanfare, Batshon reaches into the drum and comes up with a ticket, holding it in the air as he walks in a tight circle — living up to the occasional “Vanna White” teasing he gets. As he lowers the ticket, Frankie Story is right beside him. Together, they examine the name and the number on it, then carry it to the blackboard where attorney Joe Blandford, who may be the only guy here in a crisp white shirt, waits. Blandford wears his frameless glasses halfway down his nose, but he still needs to use the flashlight on his cellphone to illuminate the writing.
“Anybody nervous?” Mulrooney asks as Blandford, Story and Batshon agree about the name and number on the ticket — a step they added a few weeks ago when Mulrooney misread a ticket. Mulrooney has his reading glasses on as Terry Hall, a Shirley’s Way board member, passes the ticket to him and whispers what the others found. Mike extends his arm its full length and draws it in again to read the ticket.
“Leslie Duncan!” he shouts. “Is Leslie Duncan here?” Duncan’s card is No. 35 — one of 14 remaining cards — so Story, livestreaming for Facebook watchers, focuses in on No. 35. Mulrooney waits a few minutes for Duncan to appear, and then he’s done waiting. “Let’s see what’s under card 35.”
The card box is open and Batshon uses a box cutter to painstakingly slice into the plastic that seals each card. He peeks at the card’s bottom corner and turns toward Story, who moves closer with her camera for the reveal. Every person jammed in behind her leans in too, trying to see what comes next.
“Is it red?” Mulrooney asks.
Batshon flips the card. Two people scream, and Batshon turns to Mulrooney with an “I’ve got a secret” smile.
“It’s the Queen of Hearts!” Mulrooney shouts.
There’s a collective gasp and some screaming before the crowd roars and applauds. Confetti drops from somewhere. Mulrooney looks shocked. The crowd actually sounds a bit disappointed. Mulrooney shakes his head and yells, “Nobody’s cheering for Leslie Duncan? Give it up for Leslie Duncan!”
And they do.
She’ll take home $309,000, 40 percent of the pot — as opposed to 50 percent — because she isn’t here for the drawing.
Two weeks later, it all starts again. This time, the rules change: You don’t have to be at Khalil’s to win half the pot, and you can win as much as $500 just for having your ticket pulled from the drum. On July 8, someone wins that pot when it reaches $102,662. And the following week, it starts over again, with Shirley’s Way seeding the pot with $10,000.
The punch-cards Mulrooney once dismissed as a revenue source now look like they may be the money tree he’s been looking for. By mid-summer, with the approval of the Kentucky Gaming Commission, Shirley’s Way opens a digital punch-card gaming room in what was formerly the overflow room for Queen of Hearts. Shirley’s Way offices move into the space as well, and a new chapter begins in the dream of one man who knows how to make friends and cannot bear to hear a sad story.
Behind it all are life lessons from one quiet woman, a woman devoted to her family, who liked to make carrot cake and especially loved its sweet icing, who helped her neighbors, who showered attention and affection on her grandkids, who was sad when the news was sad and happy when it was happy.
One night during Queen of Hearts, Shirley Mulrooney’s widower, Mike Sr., looks around the room, sees all the shirts emblazoned with his wife’s name, and shakes his head. “She would be very embarrassed,” he says, trying not to choke up. “Yes she would.”
This version of the story does not include the wonderful photographs Mickie Winters took for this story. To see Mickie’s work, please go to https://archive.louisville.com/content/shirleys-way-cancer-support-nonprofit-south-end-louisville. To see more of Mickie’s work, go to mickiewinters.com