Elmhurst resident Julia O'Malley Stepenske was 15 years old when first diagnosed with a fast-growing non-Hodgkin's lymphoma—cancer affecting the lymph nodes, spleen and other organs of the immune system.  Her prognosis was good; the cure rate even back then was more than 80 percent.  After undergoing extensive chemotherapy, doctors told her she had less than a 1 percent chance of the cancer coming back.

But at age 34, while pregnant with her second child in 2008, and 19 years after remission, she discovered a lump in her breast.

"I freaked out," she recalled.  "I was carrying a 30-week-old baby and had a 2 1/2-year-old that I was trying to potty train.  My husband and I had discussed this event maybe happening someday, but never really believed it would happen."

Lightning may not strike twice, but cancer certainly can.  Studies show about 70 percent of those who had a childhood cancer will develop at least one "late-effect" cancer at some point in his or her life, depending upon the type of cancer and treatment.  

According to the National Children's Cancer Society, more than two-thirds of childhood cancer survivors experience at least one late effect as a result of their disease or treatment.

Stepenske's parents and siblings had always been there for her, but were also affected by the gravity of her illness. 

"My parents have been wonderful through all this," she said.  "And my husband Doug was a rock and so positive.  The entire family banded together to support us."

Fortunately, Stepenske had a large and deep network of support.  She still had friends from when she was a patient at Children's Memorial Hospital, where she also worked as a pediatric oncology nurse.

"Here I was taking care of children who had had stem cell transplants, and I needed one myself," she said.  "It was really hard to wrap my head around.  I kept thinking, 'Who does one turn to in these times of crises?' "

Stepenske turned to her dear friend Karen Kinahan, a pediatric oncology nurse who now coordinates the adult survivors program at Northwestern University.   The STAR program, which stands for Survivors Taking Action and Responsibility, focuses on patient care, education and research.

"Survivors of childhood cancers have special medical and psychological needs," Kinahan said.  "Most primary care providers don't have an expertise in these areas.  We look at a patient's initial course of treatment and continuing risk factors.  Through our program they have access to specialists who are familiar with the late effects of past treatments."

Kinahan said about 80 percent of children diagnosed with cancer become long-term survivors, thanks to advancements in medical treatments. 

"As a result, we believe we have a responsibility to provide continued monitoring and care for the late effects of these diseases and treatments," she said.

Being in a survivor program, Stepenske said, made her realize how important it is to have support through all life's changes. 

"Each survivor has an unique story," she said.  "Cancer humbled me.  As a teenager I was always pushing the limits, then I got sick.  I had more fight and anger then.  But that experience directed my career path, dictated my college choice and kept me closer to home.

"When the second cancer struck, I was diligent in my follow up.  I got into the right hands faster.  I knew what I was getting into."

Today, after 3 1/2 rounds of chemotherapy and a stem cell transplant, Stepenske has renewed hope.  Her daughter Grace is 2 1/2, another daughter Mia is 5, and she is once again out of treatment.  The charity she started in 2006, SurvivorVision, has now become her greatest passion.  Its purpose is to provide a network of support for other survivors and to advocate for the survivorship movement.

Through SurvivorVision, no milestone goes unnoticed, Stepenske said. 

"Being cancer free for 100 days after receiving a stem-cell transplant is a major milestone for pediatric cancer survivors," she said.  "During this time survivors no longer require medications and their immune systems are stable, enabling them to enjoy a meal in public and perhaps the outdoors."

To commemorate this special day, patients receive a packet of fun items, including gift certificates, T-shirts and notepads, many donated by various businesses in the Chicago area and across the nation.

 "Julia has been a great friend and resource for us," said Nicole Krzak. Her 4-year-old daughter Emma was diagnosed with retinol blastoma as an infant. Krzak and her husband live in Elmhurst but met Stepenske while at Children's Memorial Hospital.

"Because of her medical background, she's always been straight up and honest with us," Krzak said. "We would call Julia to help explain things. We felt more comfortable knowing and understanding our options. It's nice to know we have a place to keep up on the cancer issue and follow up if need be."

 "We work with some very special patients," Stepenske says. "But we also help fund programs that wouldn't be able to exist without our help."

For example, through a grant from SurvivorVision, the STAR program will host a professional education symposium on Nov. 12 for primary care providers and their medical staff.

"SurvivorVision helps us to go above and beyond patient care," Kinahan said. "We both have a focus on education and research."

"I now know that my pregnancy could have been a trigger for a relapse," Stepenske said. "Yet again this experience has proven to me that you cannot ignore your cancer. You have to embrace it, move forward and be your best advocate."

 SurvivorVision will hold its Annual Gold Ribbon Gala on Oct. 22 at Wilder Mansion in Elmhurst.  The event will feature a catered dinner, music and dancing and a live silent auction.  For more information, go to www.survivorvision.org.