Where does all the Big Slick money go? A Children’s Mercy doctor and patient explain

How are we going to spend so much time in a hospital?

It was one of the first thoughts that ran through Selene Feyerabend’s mind in January when her 8-year-old daughter, Sophia, was diagnosed with leukemia.

Sitting on the Children’s Mercy hospital bed with three of her daughters — Sophia, 7-year-old Maya and 4-year-old Delilah — one recent afternoon, Selene remembers the apprehension.

“I was so nervous,” she says.

So she vented to the nursing team: How would they keep Sophia in good spirits and her mind off of her illness? How would Selene’s other daughters be kept occupied during those long hospital visits? How would she and Sophia, who just weeks before were living normal lives in Overland Park, adjust to a life confined to the four walls of a hospital room?

“I’m telling the staff my worries, and I remember them being very calm and just telling me: ‘Don’t worry, we do a pretty good job.’ 

The reassurance, Selene says, was both comforting and perplexing. How were they so calm? How were they so sure?

Big Slick, that’s how. Well, in part, at least.

Since 2010, Big Slick Celebrity Weekendthe extravaganza hosted by local celebrities Rob Riggle, Jason Sudeikis, Paul Rudd, Eric Stonestreet and David Koechner — has donated more than $4.5 million to assist the Cancer Center at Children’s Mercy Kansas City with expansions to provide better stays for patients and families, with groundbreaking research and with the purchase of advanced medical equipment. Last year alone, the event raised more than $1.3 million, its biggest haul yet. This year’s fundraiser is June 23-24.

“I’m speechless, really,” says Dr. Alan Gamis, the cancer center’s section chief of oncology. “Big Slick has impacted the lives of children so much more than they will ever know.”

Gamis has spent more than 25 years researching in the cancer center.

“Recently, new avenues have opened up for treatment,” he says. “Avenues we’ve been able to explore in part because of Big Slick.”

One such avenue is chimeric antigen receptor therapy or CAR T-cell therapy.

The human body’s immune system is composed of millions of T-cells whose job is to fight off and destroy foreign invaders, like a common cold or the flu virus. However, since cancer cells come from within the body, T-cells are not programmed to attack them. It’s one of the reasons cancer can spread so relentlessly.

Gamis and other doctors are experimenting with ways to reprogram T-cells to attack cancer cells without attacking the rest of the body. Children’s Mercy is at the forefront of the research, Gamis says, largely because of Big Slick funds.

“We were one of only five children’s cancer centers embarking on this research a year ago,” Gamis says.

The early signs have been more than encouraging: “We’ve treated both adults and children who only had weeks or months to live,” Gamis says. “They receive the CAR T-cell therapy and are completely leukemia free.”

When compared to chemotherapy, surgery or radiation, Gamis says, CAR T’s toll on the body is minimal:

“These kids, they don’t lose hair. They don’t become sick. It’s amazing,” he says. “They receive these new types of treatment, and they don’t even feel like they’ve done anything. The suffering compared to chemo or radiation is reduced, I’d say, 99 percent. It’s remarkable.”

Over the years, Big Slick funds have also allowed researchers to use Affymetrix technology, which helps them to better understand the DNA changes that lead to cancer. Funds have also helped the center create a repository of cancer cells that researchers can study.

“These components are all building blocks to an overall approach to treating cancer,” Gamis says. “I think the money we’ve received from Big Slick has accelerated cancer research five to 10 years in our region.”

“You know how they say when someone gets cancer, the whole family gets cancer? I truly believe that.”

Selene looks over at Sophia on the hospital bed. She’s a petite princess. Selene, Maya and Delilah are all wearing gray and purple “Team Sophia” T-shirts. Sophia, appropriately, is clothed a bit more distinctly: a colorful pair of pajamas with cartoon animals and “Look at me!” splattered across. A budding glamour queen with an affection (and precocious talent) for makeup, she has decided to go with bright fuchsia lipstick. A subtle, iris-colored choker completes the ensemble.

“It’s been hard on everyone,” Selene continues. “Hard on her sisters, on her obviously. It’s been an adjustment, and we’re just trying to make the best of it. It helps that everyone here has been so helpful and so cooperative.”

Part of the reason the cancer center is ranked one of the best in the country by U.S. News & World Report is its perfect scores in helping patients and their families.

That means making the stay for patients as comfortable and as stress-free as possible. The center accomplished this feat to a great degree in 2010 and 2011 through a considerable expansion, made possible in part by Big Slick funds.

Fifteen rooms and beds were added to the fourth floor hematology, oncology and bone marrow transplant wing (known as 4 Henson Hall or 4HH). The family room, a respite for parents, was expanded to include a laundry facility, computer access, mini kitchen, television and electronics charging station. Entertainment systems with TVs, DVD players and video games were installed in every room. Now doctors have an overnight physician room if they want to stay near patients. And most important, for Sophie at least, a new play room was constructed.

“It’s my favorite room in the hospital,” she says, flashing a wide, toothy grin. “I like doing the crafts and games.”

Maya and Delilah cut in: “And Potato Head! And sand art!”

When Sophia isn’t doing makeup (on herself, her sisters or even the nursing staff) or executing one of her famous pranks (watch out when she gets her hands on Silly String), she, like most every other kid in 4HH, relishes the play time.

Some days she might go into the playroom, its walls accented by local graffiti artist Scribe’s whimsical anthropomorphic cartoon characters, to sing on the karaoke machine. Other times she might be in the mood for a board game with the nurses. Or she could always plug in the PlayStation or read any of the dozens of books (“Harry Potter and the Goblet of Fire,” “New Moon,” Dr. Seuss, etc).

There are puzzles and coloring books, dollhouses and action figures. Toy cars, baby dolls and a dozen other ways to keep any kid occupied.

“Just having the ability to say, ‘Hey, Sophia, do you want to go to the playroom? Let’s get outside these four walls and do something,’ it’s everything,” Selene says. “She was telling me earlier how she likes how all the cabinets in the playroom are unlocked and open.”

It’s an appropriate metaphor. The playroom, mere steps away from the oppressive rooms, is a refuge. A place where all doors, cabinets and possibilities are unlocked. A place for kids, already going through a tough time, to be able to escape reality, if only for a few hours.

Selene has her own escape, too.

“The family room. Oh my God, it’s vital!” she says.

“Just to have the opportunity to go there for a minute, take a deep breath and start over. And the laundry room? You have no idea how much easier that makes things, not having to send your laundry home every weekend.”

Like many moms, since Sophia was diagnosed, Selene has made a habit of spending up to five weeks at a time at the hospital while Dad takes care of the other kids at home. It’s around that time that the hospital recommends she go home for a week or so to recharge. After that, another five weeks.

She mentions how she’s sometimes able to steal a few moments in the family room and meet the other parents sticking it out alongside their kids. Once she went into the room to get some coffee and struck up a conversation with a group of moms: “We ended up in a circle praying for one another and the kids. … It’s just a great little getaway and an opportunity for you to take some time to be well mentally and physically. And that’s important. It’s a crucial part to your kid’s healing.”

“I’ve always seen what Big Slick was doing for kids,” Selene says. “I just never thought I would be a part of it. But now that Sophia’s benefiting directly, it makes me even more appreciative. I don’t think I can find words to thank them.

“What Big Slick does, it makes me proud to be a part of Kansas City. That these guys are so famous and take the time to give back to their community. It inspires you.”

She watches Sophia rummage through her makeup kit with Maya and Delilah. “I always say this journey has been very difficult, but we’re in the right place.”

Aaron Randle: 816-234-4060, @aaronronel

Big Slick Celebrity Weekend

Five hometown hosts and 26 celebrity guests will converge for three big events to raise money for the Cancer Center at Children’s Mercy:

▪ The celebrity softball game starts at 5 p.m. June 23 at Kauffman Stadium. Anyone with a ticket to that night’s Royals game can attend.

▪ A free block party starts at 8:30 a.m. June 24 outside Pinstripes in Overland Park’s Prairiefire, featuring a red carpet event at 9:45 a.m. Celebs and ticketholders will compete in a charity bowling tournament at 10.

▪ That night is a sold-out silent auction and party at the Arvest Bank Theatre at the Midland.

Learn more and get tickets at bigslickkc.org.