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Drawing inspiration <br> Kenmore siblings give back to Roswell Park Cancer Institute's Paint Box Project after sister battles rare form of childhood cancer

Sometimes it may seem at this time of year that cheer and good will have been transformed into a world of material possession and greed. However, the members of the Paint Box Project have reminded families and friends of cancer patients across Western New York of the true meaning of Christmas.

Founded in 1990 by Roswell Park Cancer Institute, this charity had a surprisingly small beginning, when it was composed almost entirely of volunteers.

Current manager of the project, Jennifer Seth-Cimini, describes it as "... a charity founded out of grass-roots. It began so small and, in the 20 years it's been around, has grown so much. It's unbelievable."

Although the management of the charity has changed several times since its creation, the project's goals have remained clear and consistent. The top priority of the organization is to bring together families of cancer patients by introducing them to the benefits of the arts. Although many patients have come and gone from the program, a few patients have been involved in the program from the start. Megan Johnson is one of them.

Megan, 20, of Kenmore, was diagnosed with Primitive Neuro Ectodermal Tumor (PNET), one of the rarest forms of childhood cancer, when she was 21 months old. With only 30 to 35 new cases reported each year in the United States, PNET is known to be a particularly aggressive form of cancer. The soft cell cancer soon occupied Megan's chest wall. Megan was given only a 10 percent chance of survival. However, thanks to countless treatments and therapy at Roswell Park, she survived.

Her mother, Kathy, believes that had it not been for the efforts of Roswell Park and the Paint Box Project, her daughter would not be here today.

"It was extremely convenient to have Roswell so close to home. If it weren't, we would probably have had to move out of state," Kathy Johnson said. "Throughout her entire treatment, the Paint Box Project was there to help her through the constant chemotherapy and radiation."

The first part of the project is the assembling of people whose lives have been touched by cancer.

"Every other month or so, we organize parties at various locations around Buffalo for families of cancer patients," says Seth-Cimini.

The impact of these parties on the families extends far beyond a mere social gathering. These parties are organized in hopes of creating emotional bonds between the patients and their families. For the patients, the gatherings are a time of fun and frivolity.

"The kids and their families gather, about once a month to draw/design. Some kids are on therapy, and others are in remission and/or are survivors," Kathy Johnson said. "Most are held at Roswell, but others take place in other locations -- UB, the (Albright-Knox) Art Gallery, the Frank Lloyd Wright House (which was the inspiration for Megan's "Gifts for Work" art), etc. This gives the kids a chance to see and learn more about some of the other treasures in Western New York.

"The parties are very lighthearted," she added. "They provide a good support system whether we're celebrating good news or helping someone cope with bad news."

The compelling emotion present at the events is perhaps what leads to the interaction between the children. It is often the case that, over the course of an event, the children become fast friends. Many of these relationships grow and flourish over time. Members of the project that have gone onto college frequently return to visit the companions they met through the program.

The second part of the program is equally inspiring. However, not only is it inspiring, it is culturally stimulating for the patients as well as the community. A variety of artwork is created by the cancer patients and their families involved in the project. This artwork ranges from simple paintings to elaborate collages. Upon the completion of the artwork, it is transformed into merchandise available for purchase. Products such as cards, mugs and prints featuring the artwork are sold to raise funds for Roswell Park Cancer Institute.

Not only are the patients allowed to participate, their siblings are also invited to contribute. The collection features artwork from children ages 7 to 20 years old.

Megan's siblings -- twin Dan, Elizabeth, a sophomore at Kenmore West High School, and David, 14, a freshman at Kenmore West, have all had artwork featured in the Paint Box Project collection over the years.

"When I was younger, it was just something fun to do," says Elizabeth. "I've met a lot of people and have some really nice friends because of it. Now that I'm older and have a better understanding what my sister and the other patients go through, I want to help out. Paint Box gives me a way to help Roswell.

"Having your card design picked is really exciting, and it's great to think that the cards are helping raise money for patient care and research," she adds.

After years of treatment, Megan's cancer is now in remission. She continues to contribute to the Paint Box Project, including a new line of gifts for the office.

Kathy Johnson believes the organization took on new meaning for Megan and her siblings.

"The kids have evolved the purpose of the project into something so much more than it started as. It became a way for them to give back to the hospital for all the help they have given us," she said.

She says when Megan was sick, younger siblings Elizabeth and David were not around to see what their sister was going through.

"The Paint Box Project has really helped them learn what she went through," she said.

Megan is now a junior at Dartmouth College and plans to become a doctor. Although she is unsure what type of medicine she wants to study, she is considering endocrinology.

She hopes to continue contributing to the Paint Box Project for as long as she can.

"I hope I can always participate at some level, but once I start med school, I imagine it will be hard to the find time," Megan said. "I guess, though, that then I'll be able to give back in other ways."

Danielle Grimm is a sophomore at Clarence High School.

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