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.