• Today is: Wednesday, November 21, 2018

What do you want to be when you grow up? CCChampions helps kids with cancer envision a future

ccchampions
Christopher Keough
October29/ 2018

Above photo: Sophia Tuinstra and her CCChampions mentor Ellen Doyle.

Sophia Tuinstra, a ninth-grader from Johnstown, was diagnosed with B-cell acute lymphoblastic leukemia early this year.

During her treatment, a nonprofit called CCChampions (Connecting Children with Champions) visited Sophia at UPMC Children’s Hospital of Pittsburgh. True to their mission, they asked Sophia what she wanted to be when she grew up so they could pair her with a mentor. The answer: A lawyer.

“I thought they were going to bring me a very serious lawyer who was going to quiz me on the constitutional amendments,” Sophia says. “So I studied really hard on all the amendments, even having the nurses … make sure I was prepared on all of them before I met my mentor.”

She needn’t have worried. In July, she was introduced to Ellen Doyle.

“She wasn’t a big scary lawyer with a power suit and a briefcase that I was afraid she would be,” Sophia says. “She was super smart, but approachable.”

Since that first meeting, they started what Sophia calls a two-woman book club on social justice. They read Bryan Stevenson’s “Just Mercy” and plan to watch “On the Basis of Sex” about Supreme Court Justice Ruth Bader Ginsburg. Other plans include attending a mock trial, visiting the ACLU and informal introductions to attorneys and judges.

ccchampions
Sophia Tuinstra and her CCChampions mentor Ellen Doyle share a laugh.

Mentor and mentee have taught each other a great deal.

“Even if you are very small or have a small voice, you need to have a big presence in the courtroom,” Sophia says.

Today, Sophia is MRD (minimal residual disease) Negative, which is remission for leukemia patients. The family is hopeful Sophia will be declared cancer-free in June 2020.

Her mom, Roxanne Tuinstra, says CCChampions has made a difference in her daughter’s battle with cancer. Sophia can be sad or angry, but a visit with Doyle brightens her day.

“When she visits, Sophia gathers up every ounce of energy she possibly can, and for that hour or two, she makes it count,” Roxanne says.

ccchampions
Sidney Kushner

The experience perfectly explains the mission of CCChampions, which Sidney Kushner launched in 2011 while a student at Brown University. His drive to help kids with cancer started as a 16-year-old in Upper St. Clair High School when his friend Lauren was diagnosed with cancer.

“The question kept popping through my head, ‘What can I do to be a helpful friend right now?’ ” Kushner says. “I was constantly searching for it in different ways.”

That experience continued to push Kushner during his college years, when he volunteered at Hasbro Children’s Hospital in Providence, working with kids with cancer. The first question he asked when he walked into a child’s hospital room was: What do you want to be when you grow up?

“It was amazing to see their eyes light up when they shared that they wanted to be a dancer or a hockey player and everything in between,” he says. “You could tell that, in that moment, they totally forgot about having cancer. And they were just kids again.”

During his college break back home, Kushner met with Kim Ritchey, then chief of pediatric oncology at UPMC Children’s Hospital of Pittsburgh. He shared Lauren’s story and his experiences in Providence. He offered to volunteer at the hospital’s program for long-term social support for kids with cancer. Problem was, there was no such program.

“In my naïve 19-year-old mind, I thought, ‘I’ll start it,’ ” he says. “That was the start of CCChampions.”

CCChampions asks kids about their career aspirations, then finds a role model to mentor the youngster.

The pilot program started at Children’s Hospital of Pittsburgh. The first two mentors, or “friendships,” were Pittsburgh major leaguers, Jim Rooker and Sid Bream.

Back at college, Kushner created more mentor/friendships at Hasbro and started attracting national attention for his efforts. He was featured in Harvard Business Review and Forbes and received a Heroes Among Us award from the Boston Celtics in January 2013.

Two years later, after graduation and returning to Pittsburgh, Kushner hired staff to run the program at Children’s Hospital and facilitate friendships, while he focuses on development, strategic planning and outcomes measurement.

Jen Lutz was one of those first hires.

“I was impressed by his passion, his goals, and his commitment to helping children,” she says. “Sidney’s drive to grow our organization and make a positive impact on the kids with whom we work drives us to do our best and help as many kids as we can.”

Soon after, CCChampions received an email from Linda McAllister, chief of pediatric oncology at Children’s Hospital. Hospital officials had noticed significant changes in the quality of life of patients in CCChampions. McAllister offered Kushner annual funding from the hospital budget and full staff integration at the hospital. She also offered to sit on the CCChampions board of directors.

CCChampions’s presence provides a source of joy and comfort for our patients, she says. “And the experiences with friendships give our patients something fun, exciting and comforting to look forward to.”

When Children’s first signed on with CCChampions, the organization was getting referrals for between 5 percent and 10 percent of all newly diagnosed kids. That number quickly grew to 90 percent, and fundraising opportunities kept pace.

The organization has grown from “as close to zero as it can get” in 2011 to $200,000 this year. Next year, CCChampions will launch its national expansion at Rainbow Babies and Children’s Hospital in Cleveland.

“Everything is about to skyrocket,” Kushner says.

More success stories like Sophia’s are expected as Kushner and the program expands. At least one person is certain CCChampions will succeed on a wider platform.

“Sidney is a man with a mission,” McAllister says.  “He has an unstoppable drive to improve the lives of children with cancer.”

Christopher Keough

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

This site uses Akismet to reduce spam. Learn how your comment data is processed.