By Jennifer LoConte

Survivorship, Fun & Living Life

Luke was diagnosed with an inoperable brain tumor at age three. At age five, he with his mother, Nicole Ronco, moved from the Lehigh Valley to Boston to undergo specialized chemotherapy. At the time, Ronco was pregnant and also had a 1½ year old daughter at home— but Luke was given a 50% chance of survival, so they went. Over the next eight years, Luke endured numerous surgeries, chemotherapies, setbacks and triumphs. He is now 11 and recently celebrated eight years of survivorship.

It was during those early years of Luke’s diagnosis that Ronco looked for encouragement and advice. Finding no local pediatric support groups, she decided to start her own. “I knew nothing about strategic planning, codes of ethics or mission statements,” Ronco states. “But I was adamant about starting a group where parents could talk with each other about their unique situations instead of relying solely on the medial field.” During the first year of her son’s diagnosis, Ronco’s family and a handful of volunteers held a fundraiser breakfast that netted $1200, which became seed money for her support group. With the assistance of an attorney, Ronco started the arduous process of starting a legitimate non-profit. In 2003, the Pediatric Cancer Foundation of the Lehigh Valley was born.

The Foundation’s mission statement reads, “A Lehigh Valley based organization focused on making a difference in the lives of children diagnosed with cancer and their families through ongoing programming, support and resources which enable children to live.” Ronco is dedicated to bringing back a sense of family normalcy. Programs are free of charge and involve the entire family.

Each year, the number of families that contact the Foundation increases. In 2009, there were 125 families, compared to 50 in 2007. A recent survey revealed there are roughly 300 families in the Lehigh Valley that have a child with cancer. “From the day that a child is diagnosed, he or she has the opportunity to stay with us, even if the cancer goes away,” Ronco says. She believes that success comes not only from the variety and number of programs available but also from the hands-on approach of those involved. Ronco gets to know every family member personally and builds relationships from day one.

Today, the Foundation boasts 135 volunteers and has a dozen diverse and committed board members. The Foundation sponsors numerous programs for children and their families. They include family nights at the Crayola Factory, Build-a-Bear workshops, gym and swim programs, pottery painting, zoo trips and movie nights. This summer, Ronco will send 17 children to participate at Banana Factory camps.

The organization’s headquarters, located in Whitehall, is filled with gift bags donated by scout troops, mom’s groups and local businesses. Inside are generous supplies of soft washcloths, toothbrushes, warm slippers, colorful journals and school supplies. Ronco says, “It’s the little things that can make a kid with cancer feel more comfortable and bring out a smile or two.”

One of the more popular programs is the Chemo Circus, held each year in the parking lot of the Lehigh Valley Hospital. Ronco explains that the premise is to bring fun to the clinic: “Although the nurses and doctors are awesome, it is still an ‘ouchy’ to a kid with cancer.” Clowns, face painting, therapy dogs, crafts, food and music all help to make the experience not only distracting but fun. Another notable event is the “Kick for Kancer” soccer program that takes place each summer. Every child participates on the field while learning good sportsmanship.

There is also an emphasis on the caregivers. Ronco is a firm believer that parents need downtime to reconnect with themselves and their spouses. With the help of the Little Gym and local restaurants, she hosts “date nights” several times each year. While the kids are supervised in a fun and safe environment, parents enjoy an evening out without having to worry about picking up the tab or paying a sitter.

Where will the Foundation be 10 years from now? Ronco states that she does not wish to be a national organization but rather continue to serve families locally. She is confident that the organization will continue to grow and generate enough revenue without having to rely heavily on fundraisers. She also hopes to move the headquarters to a larger facility and is in the process of hiring a full-time staff member and additional board members. Ronco reflects, “Kids don’t see baldness, wheelchairs or physical disabilities. They just see other kids. Being a part of their survivorship and making a difference in someone’s life are what make it all worthwhile.”

An upcoming fall event, the “Color my World Gala,” will be held on September 9, 2010 at the Banana Factory, featuring a live auction of artwork by local children with cancer and their families. Tickets go on sale June 15th. For more information, contact Nicole Ronco, Executive Director at 610-393-9215 or email [email protected], www.pcflv.org

Jennifer LoConte is a freelance writer and mother of two young children. She is truly inspired by the dedication of Nicole Ronco and her organization to bringing fun into the lives of children with cancer.