“They ride tricycles in the hallway, not in the park. They know the names of their chemos instead of their classmates. Their central lines have names. Nurses and doctors are their new family. They think hair is overrated. Their laughter can make a heart melt. Their strength will make a grown person cry. If you've ever seen a kid fight cancer, it will change your life forever.”
With those words, taken from an anonymous source on Facebook, 16-year-old cancer survivor Katie Carey put into perspective a $100,000 grant to Marshfield Clinic from Hyundai Hope on Wheels®.
The grant, announced at a ceremony in September, will fund a sophisticated communications program to ensure that young cancer patients from throughout the Marshfield Clinic system have access to psycho-social supportive care, no matter how rural or remote their location. The live video component also allows for medical information to be sent to clinicians in Marshfield, and gives young patients opportunities to interact with each other.
Katie, who was diagnosed with bone cancer in her leg when she was a fifth grader but is now in remission, can only imagine what that would have been like.
“That would have made such a difference to me,” said Katie, a resident of Altoona, Wisconsin. “Although my caregivers became like my second family, it was real hard for me to hang out with other kids while I was in the hospital because I was either sick or getting treatments, and the same was true for them. And at home there was no way to connect with each other face-to-face.”
Hyundai Hope on Wheels is a united effort of Hyundai Motor America and its more than 800 dealers across the United States to raise awareness about childhood cancer. The program is supported by a small portion of the sale price of every new Hyundai sold.
The gift to Marshfield Clinic was one of 71 grants totaling $7.1 million awarded in September to support pediatric cancer research projects and programs. The grant to the Clinic was the only one awarded in Wisconsin. By the end of 2011, Hyundai Hope on Wheels will have committed $43 million in donations to pediatric cancer research in the United States since its inception in 1998.
Karl Ulrich, M.D., M.M.M., Clinic president and CEO, thanked Hyundai and the dealers for the grant. “But these children and their loved ones who have gone through so much are the true heroes,” he said.
The star of the award presentation ceremony was Katie. Poised beyond her years, she spoke for nine other children present by recalling the day she was informed by her parents that she had cancer.
“The first thing I said was, ‘Am I going to lose my hair?’ I was trying to make them stop crying, but the next thing I said was, ‘Am I going to die?’”
Katie underwent treatment for 18 months, including a 13-hour surgery on her leg, and was unable to go to school during most of her treatment.
Childhood cancer survivors placed their handprints on a canvas to commemorate their personal battles against cancer.
The grant proposal to Hyundai Hope on Wheels pointed out that many children being treated for cancer live great distances from Marshfield Clinic. Few of them have access to resources for psychological or social support in the primarily rural communities from which they come. The program made possible by the Hyundai grant will provide virtual links among the pediatric cancer patient and the oncology team, a psychologist and other young patients.
“The system works similarly to Marshfield Clinic’s sophisticated Telehealth system, except it connects to patients’ homes rather than just Marshfield Clinic centers,” said Nina Antoniotti, R.N, M.B.A., Ph.D., director of Telehealth and an internationally recognized expert in telehealth and virtual health care. Each family will receive equipment that provides remote monitoring, in-home clinical video, and then a combination of personal cell phone, smart pad or PC-based applications and gaming, depending on needs assessment directed by Stephanie Kohlbeck, Ph.D., clinical psychologist, and geographic telecommunications availability.
The Marshfield Clinic effort was initiated by Michael McManus, M.D., a pediatric hematologist/oncologist; Dr. Kohlbeck; Matt Schneider, gift officer for the Clinic; and Antoniotti.
Dr. Kohlbeck said the system will allow her to stay in better touch with the young patients. She typically meets with the patients and their families when they are first diagnosed and beginning treatment at Ministry Saint Joseph’s Hospital in Marshfield. They are typically in shock then, she noted, and patients handle the cancer diagnosis and treatment in their own ways.
“They have a continuum of needs,” she said. “We can fine-tune this system for the level of care they need. Some of them are dealing with major stressors and are four hours away, so it’s pretty neat to have a tool that, with the touch of a button, you can talk to someone. Others aren’t even in active treatment anymore but may feel isolated. They just want to talk to other kids.”
“I hope we can get involved in a blog to talk to other kids if they have questions,” said Wendy Carey, Katie’s mother. Wendy has an unusual perspective on the Hyundai donation: not only is her daughter a cancer survivor but Wendy works for the Hyundai dealership in Eau Claire, Wisconsin, Ken Vance Motors. Vance himself sits on the national board of directors for Hope on Wheels and wrote a letter of support for the Marshfield Clinic grant.
“It’s so important to help children fighting cancer,” said Vance, who has seven young grandchildren. “Little three-year-olds shouldn’t have to battle cancer. It just shouldn’t happen.”
In addition to Vance, Hyundai dealers participating in the grant presentation ceremony were Don Scaffidi of Scaffidi Hyundai in Stevens Point and Travis Tilton of Kocourek Hyundai in Wausau.
Contact the Marshfield Clinic Health System Foundation for more information.