ConKerr Cancer: Bringing Pillows and Comfort to Sick Kids
Cynthia Kerr has devoted herself to bringing a little color and lots of smiles to the hospital rooms of children, one pillowcase at a time.
Cynthia Kerr's home in Wayne, Pennsylvania, has been taken over by pillowcases. Floor-to-ceiling piles are everywhere, sorted by design—butterflies, princesses, dinosaurs and superheroes for little girls and boys; lipstick, rock stars, cars and computers for tweens and teens. The doorbell rings, and a volunteer worker for Cindy's nonprofit group, ConKerr Cancer, arrives with yet another batch. The two women exchange smiles and laughs, knowing the handmade items will elicit the same reactions from those who will eventually receive them—children struggling with life-changing injuries and illnesses. "We've given away more than 340,000 pillowcases to everyone from toddlers to teens, and e-mails keep pouring in from parents who say the cases have helped their kids get through all the poking and prodding and fear," says Cindy, 54. "That's our mission—to lift their spirits and brighten their days."
Cindy's dedication is truly heartfelt. ConKerr Cancer began in 2002 after her 12-year-old son, Ryan, was diagnosed with osteosarcoma, a rare form of bone cancer. "I took him to the doctor after he banged his right knee in a bike accident, and by chance they found the tumor," she recalls. "We were in shock when we learned that around a third of kids with the disease don't make it. But we held on to the hope that Ryan would be a survivor." Shortly after he began chemotherapy at Children's Hospital of Philadelphia, Cindy thought of a special way to cheer him up. "I've been sewing since sixth grade and had a lot of leftover fabric," she says. "I figured a fun pillowcase would be the perfect gift for a kid stuck in a hospital bed. I found some cloth with hamburgers on it, which is his favorite food, made a paper pattern and got to work."
Ryan was delighted with his present. And during the five long nights that Cindy sat with him for that initial round of chemo, the idea of making cases for other stricken children came to her. After Ryan was discharged, Cindy quickly made up her mind to take action. She had been a stay-at-home mom since the first of her three children was born in 1984. But with a master's degree in business and several years of experience in marketing, Cindy was confident she could launch a successful nonprofit. The entire family— husband Gavin, 54, a corporate executive; daughters Ashley and Katie, then 18 and 15; and, of course, Ryan—agreed. After a friend of Ryan's suggested the name ConKerr Cancer, the family gathered around the dinner table one night and came up with the group's tag line, "A Case for Smiles."
"Everybody really pitched in," Cindy says. "Gavin gave up his home office space so I could have room to set up shop. He also helped me organize a glow-in-the-dark evening golf tournament to raise money for fabric and sewing supplies. The girls asked friends and parents to contribute to the cause and held their own fundraisers. Someone we know ran a triathlon and asked people to sponsor him by donating to ConKerr Cancer."
Cindy also taught the kids, Ryan included, how to use the sewing machine. He helped make pillowcases when he felt up to it, but successive rounds of chemotherapy increasingly sapped his strength. "There were some days when he could barely get off the couch, so we watched a lot of animal and cooking shows on TV," she recalls. "He longed to go back to school and be with all his friends. We had tutors come to the house, as well as a drum teacher, so Ryan could keep up with at least one of his passions. But the sports he loved so much weren't possible, and that really devastated him."
The ConKerr Cancer project, along with the hope that Ryan would go into remission, helped the family get through the year. But in late 2002 doctors told Cindy that the chemo wasn't working. "They performed a limb salvage, which meant removing bone from his leg and putting in a titanium rod," she says. "After that, Ryan had to undergo several surgeries to remove scar tissue. He was in a lot of pain and he could barely bend his leg. Just sitting at a hockey game to cheer on his friends became problematic. My son really missed out on just being a kid." Even harder were the checkups every three months to find out whether the cancer had come back. In 2004 tests revealed that the disease had spread to Ryan's lungs. He underwent more grueling
chemo treatments and had to have his leg amputated the following year.
Through it all, Ryan remained resilient. "He certainly handled it a lot better than I would have," Cindy says. "After healing from the surgery, Ryan learned how to ride a bike with his prosthesis. He managed to rock climb, water ski and snow ski. He kept up with schoolwork, hung out with his friends and even had a couple of girlfriends. Gavin and I were probably the only people who knew how much it took for Ryan to push himself past the pain and the fatigue. But he never let on. He didn't want to be thought of as the cancer kid."
Ryan's struggle also deepened his commitment to ConKerr Cancer. By 2005, Cindy had gotten many of her friends to start making pillowcases. "We'd take them to the Children's Hospital oncology ward so kids could pick their own," she says. "They loved them. Their parents loved them. The nurses loved them. Everybody said the hospital rooms instantly felt more like home." After getting his driver's license in 2006, Ryan felt well enough to deliver boxes of pillowcases himself. But his biggest contribution was managing the nonprofit's website. "He was our go-to
IT guy," says Cindy. "He really knew his way around the Internet."
Thanks to Ryan's efforts, donations started coming in from around the country. Better yet, people began e-mailing for information on how to start local ConKerr Cancer chapters. Cindy organized monthly Sewing Days in schools and hospitals around Philadelphia, and soon other chapters followed suit. "Volunteers bring precut fabric and sewing machines, and work with 20 to 30 children per visit, teaching them how to make pillowcases on the spot," Cindy says.
In 2007 Ryan's cancer returned, and this time the prognosis was grim. He had already undergone 15 surgeries, endless hours in rehabilitation, and 30 months of chemotherapy. When Ryan returned to Children's Hospital, Cindy, as always, had a present for him. "He always looked forward to his new pillowcase," she says. "He would try to make me tell him in advance what the theme was. I wouldn't, of course, but he was pretty good at guessing. One year for Halloween I picked a creepy spider design and he figured that out. Another time I chose a pizza pattern, and he nailed that one too. The cases kept him feeling as optimistic as possible."
Late that year doctors informed the family that Ryan, then 17, had only a few months to live. He came back home under hospice care and died in February, his head resting on one of his cherished ConKerr Cancer pillowcases. "In Ryan's memory we will keep adding chapters," Cindy says. The group now has 122 of them across the U.S., as well as branches in Canada, Great Britain, South Africa and Israel, serving children in more than 230 hospitals and pediatric hospices.
"We wanted to let Ryan know how much we've grown, so we recently made a special visit to his grave site to tell him," recalls Cindy. "The morning started out sunny and beautiful, but a few minutes after we arrived there was a sudden cloudburst. Coincidence, I know. But I like to think it was Ryan's way of telling us not to dwell on the past, but to move forward with the work of ConKerr Cancer. And that's exactly what we're doing."
Originally published in the June 2011 issue of Family Circle magazine.