Few experiences are as terrifying as hearing that your child has a malignant brain tumor. The diagnosis starts an emotional roller coaster of tests and treatments that can last years and often includes surgery, chemotherapy and radiation. When treatment ends successfully, with no recurrence for three years, the family may wish to move on with their lives and not look back.
Neuro-oncologist Natasha Pillay Smiley, DO, is understanding but hopes brain tumor survivors will see the benefits of follow-up care in Lurie Children’s new Pediatric Neuro-Oncology Survivorship Clinic. This specialized clinic for brain tumor survivors started last year after she was awarded the Hyundai Hope on Wheels Young Investigator Clinical Award. The clinic addresses the late effects of treatment and quality of life issues that often affect brain tumor patients, sometimes years after treatment.
The brain tumor program at Lurie Children’s is one of the nation’s largest, averaging 150 new patients referred for diagnosis each year. Dr. Pillay Smiley and her fellow neuro-oncologists treat children who would have died of their tumor in the past but now live, though often with significant late effects.
For brain tumor patients, the late effects of treatment depend on the type of tumor and treatment: Did they have radiation? How much, and to what part of the brain? How much chemotherapy? How drastic was surgery? Many brain tumor patients have neurocognitive issues, such as executive functioning deficits and gaps in short-term memory.
The clinic sees survivors for an annual visit, compiling the results of tests performed in advance so that Dr. Pillay Smiley’s time with the patient and family is focused on providing a big-picture view of the patient’s health and discussing issues of concern. She then follows up with a written report for the patient. “I’m really the quarterback for their care,” says Dr. Pillay Smiley. “The report is especially important for teens, so they get used to the idea that they are responsible for their health before they transition to adult care.”
The clinic has a strong precedent in the Division of Hematology, Oncology, and Stem Cell Transplantation. The Survivors Taking Action and Responsibility (STAR) Program has provided care for childhood cancer and hematopoietic stem cell transplant survivors since 2001. Seeing 350 patients annually, the program also participates in research to contribute to improvements in survivor care and the quality of life for survivors. Dr. Pillay Smiley credits Stewart Goldman, MD, Division Head of Hematology, Oncology and Stem Cell Transplantation, with being a model for combining clinical care and research.
“Are we making a positive change in the patient’s life? Are we showing them they have potential again?” Dr. Pillay Smiley asks. The brain tumor survivor clinic, like the STAR clinic, is a great step in the right direction.
Dr. Pillay Smiley completed a Pediatric Neuro-Oncology Fellowship at Lurie Children’s and was supported by theMax Lacewell Charitable Foundation.
This article originally appeared in the Spring 2015 issue of Heroes magazine.