WILMINGTON, Del. (AP) — Molly Anderson was diagnosed with leukemia when she was 5 years old. For nearly three long years, she underwent chemotherapy, steroid treatment, regular trips to the hospital and watched young friends die.
Molly, now 10, has been free of cancer since September 2010. But her mother, Kristen, finds it difficult sometimes, even now, to drive under the iron gate leading into Nemours/Alfred I. duPont Hospital for Children, where Molly was treated.
That's because, sometimes, long after the cancer is gone, many families struggle with the experience in much the same way a soldier struggles with a wartime past. Post-traumatic stress disorder, or PTSD, is a reality for many that extends beyond the battlefield. PTSD is something that can occur in the brightly lit halls and chemotherapy bays of hospitals, too.
It's something Anne Kazak, psychologist and co-director of the Center for Healthcare Delivery Science at Nemours, said has been long under-recognized.
"Traumatic stress is really the response that we have to events that are outside of the ordinary, that are life-threatening or horrifying," Kazak said. "They are very, very significantly impactful events."
Kazak studies post-traumatic stress in the context of pediatric cancer, which most often impacts parents or other caregivers. Children are often too young to understand the seriousness of what is happening and are more easily distracted by caring nurses and doctors who work to ease their experience.
"The issue with cancer treatment is that you may only have one situation where you're being given that bad news, but then you're in this environment with other children who die or you're rushed to the hospital," said Kazak. "There's all these things happening that contribute to it."
We even talk of cancer as if it's an enemy to be battled. We have the "war on cancer," an "arsenal of chemotherapy drugs," we vow to "fight" it, she said.
"Parents, really, I think absorb more of that and often do experience it as symptoms of traumatic stress," Kazak said.
For the Andersons, the six months following the diagnosis were a blur.
Even now, Anderson and her family relive some of those moments. It can come and go unexpectedly.
The National Library of Medicine defines PTSD as a type of anxiety disorder that persists more than 30 days after an extreme emotional trauma involving the threat of injury or death. The stress response most of us experience only occasionally — sweaty palms before a big test, a rapid heartbeat before speaking in front of a crowd — stays on even after the stressful situation is through.
When she is triggered, Anderson gets "panic attacky" and has trouble breathing. Other symptoms of PTSD include nausea, avoidance of things that are reminders of the experience and dizziness. These stress responses can be triggered by a sight or sound or when visiting a particular place, or they can sometimes come out of the blue.
The Andersons have tried to make something positive of those difficult years. They work with the Be Positive foundation, started by the McDonough family after their son, Andrew, died of leukemia at the age of 14. They look to the wonderful relationships that were formed during those years, which they still hold onto.
Kazak is working through the National Child Traumatic Stress Network on the development of standards for "trauma-informed care," which takes into account how a family might deal with extremely stressful events. These are the so-called "psychosocial responses" and might help doctors and psychologists identify families at risk and provide more for them.
Information from: The News Journal of Wilmington, Del., http://www.delawareonline.com