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Friends of Kids with Cancer co-founder Jill Turec looks toward retirement

By: Lisa Russell


Pictures of Jill Turec’s “kids” take up an entire wall of her office at the Cardinals Kids Cancer Center. As she looks at them, describing some of their heartbreaking and heroic journeys, it’s clear that each one of the hundreds of faces is precious to her – those who survived the cancer and blood diseases that brought them into her life and those who did not.

“My relationships with the kids who come through here are never over …. It’s an ongoing passion and love,” she said.

Turec has worked as a developmental specialist at the center, part of the Mercy Clinic Children’s Cancer and Hematology department now located in Mercy’s David C. Pratt Cancer Center, for close to 25 years. For nearly all of that time, she has teamed with Dr. Robert Bergamini, Mercy Clinic’s division chief of pediatric hematology and oncology. Their long partnership will end, at least on a day-to-day basis, when Turec retires this October.

With a background in education – more specifically a master’s degree in special education – Turec’s job in an oversimplified nutshell has been to help kids thrive as much as possible both during and after cancer treatment, by meeting their physical, emotional and educational needs. Thanks in large part to a challenge grant from the St. Louis Cardinals, the $2.5 million center, which opened in 2010, was designed with Turec’s input to meet those needs in a play-based, active environment. From the art therapy room known as “Mudville” to arcade games to a theater room and a playhouse complete with a back porch and shingled roof, every part of the center is geared toward treating the child, not just the disease.

Another key role Turec has played is meeting the needs of the parents and siblings whose lives also are drastically altered by their loved ones’ illnesses.

“Families go through a huge, huge stress,” Bergamini explained. “From the beginning, Jill could always articulate what it was like to be a sibling of somebody with cancer [her older brother was diagnosed with cancer as a teen and died as a young adult] and to articulate the family’s needs.

“Jill’s position has grown to fill many roles; she’s really been our right arm all this time.”

“Above all, she is the ultimate voice for the patients,” Bergamini continued. “She has a knack for talking to kids at whatever their level is. Far and away, that is her gift … her ability to use her insight to see the needs of a patient and to put their problem in enough medical terms that the medical community can learn how to solve it.”

Early in her tenure at Mercy Clinic, Turec’s passion for helping sick kids and their families led her – along with Molly Henry and Suzie Snowden, two parents of patients – to start the nonprofit organization Friends of Kids with Cancer in 1992. That labor of love has since become one of the most successful children’s charities in the St. Louis area, and a national model for what is possible in terms of merging pediatric cancer treatment with psychosocial and educational support.

 

Friends on a mission

The charity started simply, with the three founders’ desire to purchase toys for the kids to play with during their long hours of chemotherapy treatments in the clinic. When Henry’s daughter, Ellen, died of cancer at just 18 months old, the donations received in her memory became the seed money for Friends.

First, the founders established what now is known as the “Big Shelf,” a toy closet where kids who are having a bad day can go to pick out something special, hopefully receiving a lift of spirits in the process. Today, it’s a small, but still very important, part of Friends’ overall mission to “help kids with cancer … be kids.”

“The charity grew because in my younger mind, I kept thinking of all these things we needed … we would say ‘Friends can do this, let’s write a grant,’” Turec explained.  “And then grants came, and donations came, and families of children who lost their lives felt devoted to the charity … Everything just grew and magnified through the years, out of those needs.”

With Turec’s guidance and the help of many other supporters, the scope of services offered by Friends of Kids with Cancer has grown exponentially. They now include crisis intervention and counseling; a wide variety of therapy resources; educational assessments, IQ testing and tutoring; scholarships and financial aid; parent and sibling support groups, and other individualized services. Not to mention the fun stuff, like tickets to ball games and special events, gift cards and toys, and “end of chemotherapy” parties. From its initial outreach at Mercy, the charity has expanded to serve children with cancer and their families at SSM Health Cardinal Glennon Children’s Hospital and St. Louis Children’s Hospital.

“They’ve really kind of hit their stride in terms of being able to support programs in all different places – but I’d say the vast majority of programs are [still] the result of Jill giving feedback from the patients,” Bergamini said.

Out of necessity, the Friends administration has grown as well, from the all-volunteer group originally headed by the founders to a full-time staff of five, led since 2000 by Executive Director Judy Ciapciak, who work out of donated office space in Chesterfield. Henry also recently stepped back from daily responsibilities as Friends’ bookkeeper and budget director.

The arms and legs of the charity,, according to Ciapciak, remain its committed volunteers. Their behind-the-scenes efforts enable Friends to keep its administrative costs low, so that nearly 90 percent of the donations it receives go directly to its programs.

Benefits held throughout the year are a primary source of its financial support, and the growth of those events has created the need for ever-larger venues.

“The Friends holiday party used to be in just one room of the Von Gontard Center [at Mercy]. Now we’ve outgrown the whole center,” Bergamini said.

Last year, about 1,400 people attended the charity’s premier event, its annual fashion show, for which Turec served as emcee and which, due to its popularity, had to be divided into two events held on the same day at the Ritz-Carlton St. Louis.

 

Heart and soul

Although Turec’s work at Mercy Clinic has long been intertwined with her mission at Friends of Kids with Cancer, neither position has ever fit into a 40-hour work week. Her complete devotion to her patients and their families is well known.

“Jill is the heart and soul of this charity,” said Ciapciak. “She has given so much to these kids; it has never been an 8 to 5 job. But her family always understood that she often had to pick up and go.”

“I must admit, it was hard [at times],” Turec said. “I had a family. I had three daughters, and I had this. I somehow managed to [work on] the charity, work here [at Mercy] probably 60 hours a week, and have a full meal on the table for my kids. And I would get called back here at 11 at night, or at three in the morning – so yes, there were times that I wanted to quit, but for some reason I couldn’t quit … I’m glad I did it my way.”

Henry said of her close friend, “She has devoted her life to helping kids with cancer. She’s been there in the most awful circumstances. She was the one who was there with them, day after day after day …. She’s the ultimate nurturer, and the kind of person you want on your side.”

According to Bergamini, it all comes down to Turec’s unique ability to connect very personally with her patients.

“There was one girl who had a bone marrow transplant …. Post-transplant she had this horrible ankle pain, so much so that we had anesthesiology do nerve blocks in her ankles,” he said. “But one Sunday afternoon anesthesiology wasn’t around so she called Jill, who was out of town, on her cellphone. Jill talked her through some guided imagery and got her calmed down. When the nurse asked ‘I did the same thing, why didn’t it work?,’ I said ‘you’re not Jill.’”

 

A new path

Even though her official retirement date of Oct. 30 is still a few months away, Turec has already compiled a long list of activities to tackle next. At the top is spending time with her husband of 47 years, Ben Turec – who also has played an important role in the Friends organization since its inception – their three daughters and nine grandchildren.

She said she intends to expand her charitable work, adding that she’s getting “attached” to Gray Panthers, a national nonprofit focused on elder rights. She plans to take classes at Washington University. And, of course, she will continue to serve indefinitely on the Friends of Kids with Cancer advisory board.

“People have told me ‘you have no boundaries.’ Everything in my life, I just have great passion that at 70 years of age, only seems to be stronger,” she said. “I don’t know what my path is exactly, but I still have a lot of passion spilling over.”

And even though she feels good about leaving both the clinic’s patients and the kids and families helped by the Friends organization in extremely capable hands, she said, “leaving is tough.”

“This work has been in my veins,” she said. “It is my life; it is where I’ve been every day, and I’m leaving it behind … but it has been beyond my dreams what we’ve been able to do. I couldn’t have wanted a better life.”

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