Awed by the Resilience of Our Patients

By Jennifer Schneiderman, MD, MS

Stem cell transplantation for childhood cancers and other diseases has the potential to transform the lives of children. Since 1992, we’ve performed more than 1,000 stem cell transplants at Lurie Children’s, which has the largest outpatient pediatric stem cell transplantation program in the region.

Unfortunately, some patients undergoing these transplants end up trading one disease for another: chronic graft versus host disease (cGVHD). The disease occurs when the patient’s new immune system attacks his or her body. It can be life threatening, and can affect any of the body’s organs, causing complications ranging from hair loss to respiratory and liver problems, thickened or discolored skin, joint problems and reduced immune system effectiveness.

The majority of patients who develop cGVHD do so after receiving a transplant from an unrelated donor. It’s important to understand, however, that not all children who receive stem cells from an unrelated donor develop the disease. For children with cancer, the disease can actually be a good thing, signaling that the patient’s new immune system is fighting any remaining cancer cells.

Because cGVHD is a chronic disease, it has a strong psycho-social impact. Patients who initially felt great relief to be cured of their primary disease face the challenges of a new, chronic, debilitating illness. There can be socialization and depression issues, which impact a child’s quality of life.

Over the last 21 years, Lurie Children’s has cared for about 50 patients with cGVHD. It can be a very difficult disease to treat, and up to 20% of patients are still in treatment seven years after their diagnosis. I often develop close relationships with these patients and their families, and I am in awe of the resilience of our patients who, despite their illness, continue to live life to its fullest. One patient who continues to require frequent care has maintained his full course load at a local college.

The standard therapy is steroid medications, which can suppress the immune system and place patients at a high risk of infection. Some of our patients are benefitting from an alternative therapy called extracorporeal photopheresis. It uses a special device that filters the patient’s white blood cells and treats them with medication and ultraviolet light before returning them to the patient. This therapy modifies the immune system over time to reduce the effects of cGVHD.

My hope for children and young adults with cGVHD is that through advances made possible by research, one day we will be able to prevent them from experiencing the physical and psychological effects of this terrible disease.

Jennifer Schneiderman, MD, is an attending physician in the Division of Hematology, Oncology and Stem Cell Transplantation and Director of Lurie Children’s extracorporeal photopheresis program, which is supported by the JMB Hope Foundation.

This article was originally published in the Winter 2013 issue of Heroes magazine.