Friends of Kids with Cancer: celebrating 20 years of life-changing care
By: Betsy Zatkulak
Fighting cancer is tough on anyone. However, for a child, with little life experience, having to endure severe medical treatments and carry the burden of emotional and social handicaps can make the battle against the disease an extremely challenging fight – both for the child and his or her family.
But where there is darkness, there is also light – light of hope and tenacity shared among the most fragile; the medical staff who cares for them and Friends of Kids with Cancer, a group made up of local individuals with huge hearts, who are dedicated to the overall well-being of these very sick children and their families.
Friends of Kids with Cancer was founded in 1992 by developmental specialist Jill Turec and parents Molly Henry and Suzie Snowden. Turec saw a need for Friends while working at what is now the Cardinals Kids Cancer Center at Mercy Clinic Children’s Cancer and Hematology. The concerned parents saw it when they witnessed their children’s struggles and quickly recognized how important it was for every child undergoing cancer treatment to experience as much fun, laughter, support and normalcy as possible.
This year, Friends is no longer a kid. It’s grown up and its birthday is an occasion honoring its ceaseless mission to enrich the daily lives of these very special kids and their families; and its dedication to create programs and opportunities that make every day a little bit better, a little bit brighter.
“We are very excited to be celebrating 20 years of helping kids with cancer be … kids,” said Judy Ciapciak, executive director for Friends of Kids with Cancer.
What first began as a desire to provide fun and diversions at the clinics has dramatically grown to include 14 programs: providing recreational, educational and emotional support; not only to the patients, but the entire family.
“This may not be a cure, but at this time in their lives, it is the best medicine they could receive,” Ciapciak said, who is quick to give thanks for the incredible and ever-present support that comes from the St. Louis community.
“… Our supporters think with their hearts, feel with their hearts, smile with their hearts and give from their hearts,” Ciapciak said.
Changing lives, one kid at a time
Throughout the years, Friends has touched the lives of so many children and their families, including Billy “Mike” Hanning, a former Friends participant, whose young life was thrown into a tailspin in 2003 when he was diagnosed with Osteosarcoma – a cancer that develops in the tissues that supports and connects parts of the body and deteriorates the bone, most often the around the knee joint. The cancer starts when normal cells change and grow uncontrollably; forming a mass, or tumor. The tumor can be benign or malignant. Hanning’s was malignant.
He was just 18 years old.
When he first heard the word cancer, he was “shocked.”
“I was shocked because the doctor had told me it was something more minor. Just tendonitis. Then after a couple of visits with them, we found out it was cancer,” Hanning said.
In June 2003, he was told he had cancer. In September, he lost his leg to the disease. A devastating outcome for an active teen.
“I played all kinds of sports. Whatever. I played a lot of baseball, softball. Mostly, skateboarding – so losing my leg was a pretty big deal,” Hanning said.
When it came to coping with the diagnosis, amputation, treatments, and therapy with his prosthetic, as well as the physical and emotional drain of it all – Hanning relied on Friends. Although, to this day, he cannot say if he ever really did cope with his life-changing diagnosis.
“I had a lot of family and friends who were really good about it, but I would say, the first three years I don’t know that I was coping,” Hanning said. “There was a lot of depression and everything.”
Physically, he was always tired. Therapy was frustrating, taking what seemed like forever before he could walk with his prosthetic.
“I just kind of shut down. I didn’t talk to too many people. I just kind of stayed to myself as much as I could,” Hanning said. “I pretty much shut myself off from everybody it seems like.”
But Friends’ Judy Ciapciak and Jill Turec would not have any of it, Hanning said with a small laugh.
“They pushed me a whole lot,” he admitted. “They tried to do everything they could to put me in a better mood – and to get my mind off the fact that I was going in for chemo and had just lost my leg. It was pretty dark there for a little while there.
“… There are times when you are going through one of the really tough times; when the chemo is just really knocking the crap out of you, and I remember just lying there and just not having the energy to do anything and honestly there were thoughts of just ending it.”
But the Friends tag-team was constant in its efforts to get him outside of his hospital room. To get him to talk to people who were going through the same thing.
“Jill always tried to come in and make me laugh, but I usually kicked her out of my room pretty quick,” Hanning laughed: “Now, whenever I see her (Jill), it’s all hugs and smiles. I love her. They’re both great people.”
He was just over the age limit for Make-a-Wish, yet Ciapciak still found a way to send Hanning and his friends to Kansas City to watch a baseball game, equipped with tickets, hotel rooms and food. Later, he took a trip to Boston with all the teenagers associated with Friends.
As for how his family was coping with what was happening, Hanning said he has never really talked to them about how they felt. Yet, he is certain they took it pretty hard.
“They told me years later after I lost my leg that both my dad and my grandpa, right before my surgery, the amputation, asked the doctor if they could donate their leg for me.”
“He was so frail and just would lay his weakened body in the same room every time he was there (in the clinic), which was often. He was very quiet and withdrawn,” Turec said. “Who wouldn’t be – a young boy in the prime of his teen years having to lose his leg.”
“I would go to his room every time he was in our clinic. He wouldn’t talk to me. He would just act like I wasn’t in the room.”
But his rejection only made her more determined to break down his wall of silence. Always cheerful, Turec chipped away one stone at a time, and her perseverance paid off.
She talked to his father; anyone who would bring him to the clinic. Finally, he engaged in the conversation.
“I was growing so fond of Billy and he was just the most courageous individual I had ever met. Never in all the time he received treatment did he ever complain. It was amazing to be a part of his life,” she said.
Eventually, Turec and Hanning began a lifelong friendship.
“Billy will always be my hero, when times may be bumpy for me, I remember his tenacity,” Turec said, believing his strength as a teen has transcended into his adult life.
Life after cancer
Today, Hanning, 27, is the proud husband of Lauren Hanning and father of two little girls, Aubrey, 2, and Addison, 1.
Asked how he is feeling today, Hanning replied, “Overall, great.” He added that he has not had any of what he calls depression breakdowns in the last three or four years.
“I’m very active now. My little girls keep me going all the time,” Hanning said. “I run, I play with them …”
Hanning also plays competitive sports including two sled hockey teams – the St. Louis DASA (Disabled Athletic Sports Association) Blues’ squad and the U.S. National Development Sled Hockey Team.
Hanning also is playing able-bodied sports again like softball with his friends, and hunting, hiking and remaining very active in his church.
With all this activity, Hanning gives his prosthetic doctors a run for their money.
“I’m a plumber so I have to be physical in my work and I do not let it slow me down at all,” Hanning said.
“I break my prosthetic all the time … and I usually tell them they need to find a new leg to keep up with me.”
“I’m not going to slow down to spare the leg. I won’t adjust my lifestyle so the prosthetic will last longer – it’s got to come up to my standards.”
It’s hard to imagine that the competitive man he is today was ever a reclusive, angry teen. But that’s the power of Friends.
The most important benefit of Friends, a true grassroots organization where all the funds stay in the St. Louis area, is that it involves and serves the entire family.
Dr. Robert Bergamini, a physician who is board-certified in pediatrics and pediatric hematology/oncology, knows first-hand the power of that support.
In 1990 Bergamini introduced St. Louis to the theory of a comprehensive pediatric outpatient cancer center. Today, he continues to serve as a provider at the Cardinal Kids Cancer Center.
“When faced with a serious illness, like cancer or other blood related diseases, the life of a family centers on medical issues,” Bergamini said.
By one estimate, medically-related, non-reimbursable expenses consumes 25 percent of a family’s net income.
“Overnight, it is as though they have acquired a second mortgage. (But) Friends puts life back into families in so many ways,” he said.
“Friends provides support to the everyday existence of our patients and their families” – with emergency assistance, tutoring, counseling and events for families – not just patients.
Friends also serves the medical staff by providing more complete care for their patients.
Bergamini cites the educational testing that Friends provides as the best example of the organization’s comprehensive care.
“(It’s) more comprehensive than the testing done by school districts, and is often way out of parents’ ability to pay – (costing as much as) $1,500 or more,” he said. “With it, though, we are able to define learning issues, which are usually caused by chemotherapy, and customize an IEP or 504 (plan) for a child in school.
“This is crucial for a child’s success. It allows us to focus on survival, not just the cure.”
The presence of Friends serves as a gift for the hearts, minds and bodies of very sick children and their families when a diagnosis of cancer strikes a child and rocks the family’s foundation.
“I think Friends is the best organization that I have ever come across or heard about,” said Hanning. “Just that somebody would want to take from their time to do something like this … there just aren’t a lot of people like that.”