Survivor

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After battling childhood cancer, Julia O’Malley ’96 Stepenske finds strength to help others through her dream career.

Bald, shy, weak, and lacking self-confidence. When Julia O’Malley ’96 Stepenske looks back on her state of mind as she commenced her college search, she acknowledges her experience differed from that of many teenagers.

Diagnosed with non-Hodgkin lymphoma as a sophomore, Julia’s high school experience was far from typical. At the same time, it gave her a purpose: to pay it forward and to use her life after cancer to help others. To do this, Julia knew she would need a strong education, and so she decided to look at a school recommended by her nurse, Karen Jauch ’87 Kinahan.

“I loved the size of Valpo and the sense of comfort and home when I was on campus,” Julia says. As an added bonus, Valpo’s campus was close to her home in the Chicago suburbs and allowed her to stay within driving distance of her family.

Julia quickly became involved with the community at Valpo, both through the College of Nursing and Health Professions and through her sorority, which Julia says was made up of “so many amazing women, all of whom had the same passion for life I did.” Her experiences at Valpo helped Julia break free from her shyness and pursue a successful career in health care.

It was so rewarding going back and working with the team of doctors and nurses that cared for me years before.

In 2012, Julia transitioned from nursing after being recruited by Advocate Children’s Hospital in Park Ridge, Ill., to start a childhood cancer survivorship program, Pediatric Cancer Survivors in Transition (POST). She’s been the nurse coordinator of the POST clinic for three years now, and she describes them as the best years of her career. “I work with an amazing team of doctors, nurses, pharmacists, and ancillary staff that is like a second family,” she says.

Perhaps coincidentally, Julia’s former nurse and fellow Valpo grad also dedicates much of her time to childhood cancer survivors. In 2001, Karen helped launch the STAR (Survivors Taking Action & Responsibility) Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. The program provides long-term follow-up care for adult survivors of childhood cancer.
Karen authored a study that discusses the lasting effects childhood cancer treatments can have on survivors. Her research was based on data from the Childhood Cancer Survivor Study, which surveyed more than 14,000 childhood cancer survivors. The results help to show the connection between childhood cancer treatments and emotional distress and reduced quality of life in adulthood.

These effects demonstrate just how important survivor groups can be and why this work is so important to both Karen and Julia. In addition to her work with POST, Julia leads a foundation to aid similar survivor-focused programs.
“My life goal was to work with children with cancer, but my passion was to work with survivors,” Julia explains. With the help of her husband, family, friends, and a mission, Survivor­Vision was born.

SurvivorVision began fundraising to provide grant money for health care services, educational and social events, and research for childhood cancer survivorship programs in Chicago. People and companies across the nation soon noticed their efforts, and demands for funds increased. The small fundraising group from Chicago started taking calls from national organizations such as Beads of Courage, which provides arts-in-medicine supportive care programs for children coping with serious illness, and Texas Baylor Children’s Hospital, to support their survivor portal for Passport for Care.

Julia and her volunteer board knew they needed to define a focus for SurvivorVision as it grew. They decided to focus on internal programs, and they currently fundraise for two specific programs — the POST 5K challenge, which pairs childhood cancer survivors with running mentors to complete a 5K race, and a textbook scholarship program to benefit families who are often financially devastated after cancer therapy.

“Living as a childhood cancer survivor, I understood the importance of life-long health care,” Julia says. She was grateful to be part of an adult survivorship program run by a former Valpo nursing alumna, but says she had no idea just how fortunate she was until 20 years after her original cancer diagnosis, and while pregnant with her second child, when she suffered a late relapse.

With the care and guidance of her health care team, Julia quickly began therapy and once again had to navigate the fear of cancer. This time, however, she says she wasn’t worried about hair loss and social isolation. She focused on her husband, her 2½-year-old daughter, and her unborn child.

“With much support and love from my community, my family, and my Valpo friends, I survived four rounds of chemotherapy, gave birth to a beautiful miracle baby, Grace, and then sealed the survivorship deal with a stem cell transplant six weeks post-partum,” Julia says.

Following her stem cell transplant, Julia says she “finally had time to reflect on what had truly happened and what life would be.” The introspection led to the idea for SurvivorVision, which she was able to launch with the help of her close support system.
A focus on family and relationships has long been important to Julia. Entering college just two years after ending chemotherapy treatments, Julia wanted to find a campus close to home and to her parents, with whom she was very close. And as a Valpo student, Julia’s close-knit circle grew to accommodate the many friendships she formed.

In fact, it was one of those friendships that sparked Julia’s involvement with the College of Nursing and Health Professions. Initially a pre-med student, Julia toured the college during her freshman year with a friend, who introduced her to Professor Elise Alverson ’96, ’11 DNP and Dean Janet Brown.

“They both had a twinkle in their eyes when they talked about the profession of nursing,” Julia says. “I could see their passion, and knew I found my life path. Once I switched to nursing, I truly felt that I was home.”

Julia says although her professors may not have been able to relate to her personal drive to help childhood cancer patients, they provided her with any and every opportunity to pursue that dream. Looking back, that drive is one of the attributes that stand out to her former mentors.

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SurvivorVision

A two-time cancer survivor and oncology nurse, Julia was compelled to found SurvivorVision to care for childhood cancer survivors like herself.

Located in Chicago, SurvivorVision aims to provide a supportive network for survivors of pediatric cancers. It does this through advocacy, support groups, and educational programs. The foundation also funds programs that improve survivors’ quality of life.

SurvivorVision regularly collaborates with health care providers and community organizers to advance its mission. In addition, the foundation’s two premier programs — the Textbook Scholarship Program and Day +100 Packs — provide ongoing support to survivors. The Textbook Scholarship Program encourages survivors to pursue their educational goals, and the Day +100 Pack, filled with a journal, water bottle, SurvivorVision t-shirt, and “Beads of Courage,” offers hope and support to those who have reached 100 days cancer-free.

“Julia always had a passion to help others,” Professor Alverson says. “Her caring attitude and service to the community is something we hope to instill in all of our graduates. I am very proud to have had her as a student and wish her well as she continues to improve the lives of cancer survivors.”

Professor Alverson helped coordinate Julia’s senior clinical rotation on an oncology unit at Porter Memorial Hospital, an experience Julia says was critical to her later success as a nurse.

“I learned to care for patients with compassion and humor,” she says. “I grew so much that semester, and for the first time I experienced what it would be like to be a nurse.”

After graduating, Julia worked at Ann & Robert H. Lurie Children’s Hospital of Chicago for 17 years in pediatric oncology and stem cell transplant. She says she loved the patients and families she worked with every day and that she was able to continue to learn throughout her career.
“This path allowed me to look at the whole patient and family dynamic,” Julia says. “It was so rewarding going back and working with the team of doctors and nurses that cared for me years before.”

Although she was sad to leave her colleagues at Lurie, Julia says the opportunity to launch her childhood cancer survivorship program was the career opportunity she had dreamed of since her first nursing classes at Valpo.

Opportunities, dreams, and gratitude are common themes when Julia describes her life experiences. She says being diagnosed with non-Hodgkin lymphoma as a teenager changed her outlook on life and strengthened her relationships with family and friends, and it seems to have also given her an inner strength and determination to live a life of purpose.

“I was diagnosed in 1989 and lived as a survivor and enjoyed all that life had to offer, even while experiencing late toxicities related to my treatment,” she says. “With the right care and guidance from my survivorship team, I was able to run three marathons, travel overseas, and more.”

Julia’s drive and love for life are key to the success of her foundation. According to the organization’s website, nearly 14,000 children are diagnosed with cancer each year, and only 4 percent of all federal funding for cancer research is focused on childhood cancers. Survival rates for childhood cancer have not increased significantly in the last 10 years, due in part to limited funding, and three out of five children diagnosed suffer from long-term side effects of cancer.

SurvivorVision aims to advocate for these groups and to help support research initiatives that may not receive federal funding. One of their goals is to educate lawmakers, community health care providers, and insurance providers about the “importance of providing children and adolescents with not only a cure, but the right and equal access to appropriate survivorship care.” The organization continues to receive support from a variety of sources and recently received $10,000 from Hops for Humanity, a nonprofit based in Elmhurst, Ill., that empowers survivors of childhood cancer by raising awareness and aiding in funding for research.

“I have been so impressed with Julia’s dedication to her cause,” Dean Brown says. “Her leadership ability is quite evident. I have attended her major fundraising events, and it is so wonderful seeing a Valpo grad commanding such respect from her colleagues. Julia is a courageous individual who has shared her strength with others.”

Julia has come a long way from the shy teenager who was just off chemotherapy and for whom the thought of leaving home was “daunting.” She’s stayed close with connections made at Valpo and notes that even if they do not see each other very often, they can always pick up right where they left off and that their Valpo bond remains strong.

She runs SurvivorVision along with five board members out of the home she shares with her husband of 12 years, Doug, and their two daughters: Mia, 10, and Grace, 7.
“We’re surrounded by our family and friends,” Julia says. “What more could you ask for?”

My life goal was to work with children with cancer, but my passion was to work with survivors.