Today, more than 80 percent of kids survive their cancer diagnosis. But they deserve more than survivorship. They deserve to thrive.
Eight years ago, John and Annette Heller recognized a need for full-circle care for pediatric cancer patients and their families. With a $2 million gift, they utilized the Caterpillar Foundation match to establish the Heller Center for Kids with Cancer at OSF HealthCare Children’s Hospital of Illinois. They have since spearheaded a fundraising effort that has raised over $10 million for the Center.
The Hellers’ commitment to kids with cancer extends far beyond medical treatment and disease. Meeting with patients and their families, the Hellers have seen the unexpected challenges children and their families face every day while fighting cancer.
These physical, mental, emotional, educational and spiritual obstacles – both during and after treatment – are often some of the hardest parts of the cancer journey. Overcoming them requires special services that cannot be reimbursed through the traditional insurance model.
The Heller Center for Kids with Cancer is the answer for so many families in our community who navigate an unexpected cancer diagnosis. Its programs were the missing link for patients and their families. They help coordinate care to meet each patient’s needs, which isn’t offered anywhere else in our region.
The Heller Center for Kids with Cancer is a new model for post-cancer diagnosis at Children’s Hospital because every child deserves to live a happy, healthy life, during and after their cancer diagnosis. The following seven services were established to answer questions before they are asked by a parent of a patient:
Patient family education and navigation guides families with information, training and other resources, while also creating a personalized action plan specific to their family and diagnosis.
Mental and emotional health strengthens kid and family coping skills as they adjust to life with cancer, but also long after treatment ends.
School and career support assists kids with schoolwork, educates teachers and students about their diagnosis and treatments, teaches social and adult living skills, and aids with college and career planning.
Nutrition and wellness expertise educates families on how to create healthy diets, prepares families on how to handle treatment-related side effects in taste and toxicity levels, assists with specialized feedings and more.
The adolescent and young adult program offers peer activities, mentoring, education and career support.
The long-term follow-up program provides health screenings, referrals, wellness education, assistance with life skills, insurance coverage and the transition to adult care.
Supportive and palliative care supports families with end-of-life discussions, hospice and bereavement care while helping families to make decisions at every stage of their journey.
“In 2021, we experienced not just one grandson, Hendrix, but also his brother, Lakota, being diagnosed with, a form of kidney cancer called Wilms tumor within three months of each other,” said Helen Saxby, grandmother to Hendrix and Lakota Porter. “The Heller Center is a priceless resource on its own for the unexpected issues that arise when a child is going through cancer.
“While Lakota, age 7, had hospital stays or chemotherapy treatments, The Heller Center made sure he had a teacher to keep him caught up with his schoolwork. Both boys enjoyed their time with the exercise physiologist. It was very important to keep muscles moving due to damage caused by chemotherapy. Dieticians were also provided by The Heller Center to make sure the boys’ nutrition issues were being addressed. Having The Heller Center in central Illinois definitely makes a very difficult time easier.”
You can get involved and/or learn more about The Heller Center for Cancer Research at: www.osfhealthcarefoundation.org/heller-center.
Tom Hammerton is President of the OSF HealthCare Foundation
Stacy Litersky is the Foundation Fundraising Development
Coordinator for Children’s Hospital of Illinois.