Post-Traumatic Stress in Parents of Kids with Cancer
I wrote this story after recognizing that among parents of kids with cancer — especially brain tumor — our well-being was determined by our children’s MRI schedule. All children with malignant brain tumors, including those that have been successfully treated, must be routinely scanned because of the very real risk of recurrence. A clear MRI meant instant euphoria that gradually segued into fear and discomfort as the next one loomed. The month before an MRI “scanxiety” would peak. Even when Natasha had recovered and was flourishing, certain places, people and even objects would trigger a flashback to the day of her diagnosis. I realized that a child’s brain tumor diagnosis left a parent with a lifelong sentence: either you live with the constant fear of recurrence — and the dwindling survival statistics resulting from that recurrence — or you live with the pain of losing your child.
By Suzanne Leigh
Published in the San Francisco Chronicle
Melanie Wellbeloved was confident that the spill her 11-year-old son, Hayden, took while walking to school wasn’t serious. But on the way to the ER of Kaiser Rafael Medical Center her heart started to race. She felt choked by memories of the last trip to the same ER months earlier when her younger son, Mason, had collapsed unconscious in her arms, after pleading with her to “stop the racket in my head.” A CT scan had revealed a brain tumor, and she and her husband, Robert, were told to prepare for the worst.
After weeks of radiation for a glioma, the tumor shrank and 9-year-old Mason returned to school. He’s made promising strides since then, but, says Wellbeloved, she is not yet “normal.” The San Rafael regional research director for a local television station says she feels hyper-vigilant and can’t shake the anxiety, dread and “images of worst-case scenarios.”
“I feel fragile and vulnerable,” Wellbeloved says. “Everyone keeps celebrating Mason’s progress. But I feel that I can’t let my guard down and have to be prepared for anything at any time … it’s always there.”
Wellbeloved’s feelings sound similar to those of people suffering from post-traumatic stress disorder, a condition not traditionally associated with healthy adults untouched by armed combat, natural disasters or violent crime. But like others who struggle with PTSD, parents of children with cancer may face a lifelong fear of the enemy: invisible, insidious and potentially invincible.
In a 2005 study, published in the Journal of Clinical Oncology, researchers from the Children’s Hospital of Philadelphia found that of 171 mothers and fathers of young patients undergoing treatment for cancer, all but one had post-traumatic stress, a disorder described as “closely related but not as severe as full-blown PTSD.”
Although PTS does not meet all the criteria established by the American Psychiatric Association for a diagnosis of PTSD, some clinicians use the terms interchangeably. Dr. Richard Shaw, a child psychiatrist at Stanford’s Lucile Packard Children’s Hospital, says people with PTS could “exhibit two symptoms of one criterion when three are required for a PTSD diagnosis. But this distinction might not be significant because those two symptoms could be very extreme.”
Among those symptoms listed by the psychiatric association are intense fear, helplessness or horror; recurrent nightmares and flashbacks; irritability, anger outbursts, heightened startle response; and avoidance of events, people or places associated with the trauma.
In an editorial accompanying the children’s hospital study, Sharon Manne, now a researcher at the Cancer Institute of New Jersey, referred to parents of children with cancer as “invisible patients.” Even when children are cured, she wrote, “fear of recurrence is a universal never-ending worry for parents.”
Those fears are not unwarranted for parents of the 1 in 300 children diagnosed with cancer. While the cure rate in children for a type of leukemia called ALL has greatly improved over the past few decades, prognoses for other less common leukemias and cancers are not as encouraging. Moreover, studies have demonstrated that the toxicity of chemotherapy and radiation can cause secondary cancers and heart disease several years after treatment.
Roni Curtis-Valle and husband Edgar Valle of Fresno are familiar with some of the PTSD symptoms. Prior to their 6-year-old daughter Natalia’s brain tumor diagnosis, Curtis-Valle says, she and her husband had been “getting mad at her for carelessness and things like dropping water on the carpet.” After her death, they had recurrent nightmares over those admonitions: Why hadn’t they recognized that the mishaps were caused by a tumor affecting part of the brain controlling fine motor skills?
Karen Hatfield of Coarsegold (Madera County), whose 12-year-old son Isaac has battled a low-grade tumor for five years, says she and her husband, Wade, have found ways to counter their stress by shifting the focus “away from cancer being the center of our lives.” Her participation in the group 46 Mommas Shave for the Brave, which raises money for childhood cancer research was “an empowering experience that created solidarity among the mothers.”
Still, the couple’s fear and anxiety peak in the days leading up to quarterly MRIs, Hatfield says. “I know from our personal experience that tumors can come back with no symptoms. How do you know when you’re safe? You can’t. Is your child going to get a three-month reprieve, or is this the scan that forces you to enter the world of toxic chemo drugs, painful pokes, nausea and loss of hair?”
Even during calm periods, a seemingly mundane comment can derail Hatfield. While driving recently, she overheard her daughter ask Isaac what he wanted to be when he grew up. From her rearview mirror Hatfield scanned his face. “I don’t know,” he said. Hatfield was momentarily gripped by a wave of terror.
Push to screen parents
To help couples like the Valles and Hatfields, Anne Kazak, a psychologist and lead researcher of the children’s hospital study, called for routine PTS screening of parents during their child’s treatment. But few families report such screening. In an informal poll, conducted in 2010 in an online forum for families of children with brain tumors, many respondents recalled desperate nights in hospitals, where comfort was limited to spiritual services or a kind word from RNs as they pivoted between patients. (The isolation of parents may be heightened by preferences for private rooms. According to one respondent, a father in the United Kingdom, where wards are more common, having patients in the same room opened the door to the possibility of “sharing experiences with other parents.”)
Packard psychiatrist Shaw says that doctors have been “slow to tune into the issue of PTSD” in parents of children with cancer. His research on PTSD in parents of infants in intensive care, and a new study on whether “brief supportive psychotherapy” is helpful, may prove instructive for clinicians interacting with parents of children with cancer, he says.
Shaw believes social workers can play a key role in identifying parents who might have trouble coping with their child’s illness. At Packard, the social workers screen families at admission and monitor them during their child’s treatment and beyond. Those who seem most vulnerable are referred for psychiatric consultations early in the process.
Sensitive wording helps
Pediatric oncologist Dr. Robert Goldsby, at UCSF Benioff Children’s Hospital, where Mason Wellbeloved, Natalia Valle and Isaac Hatfield have been treated, says a child’s oncologist also bears some responsibility in providing emotional support. Sensitive wording of prognoses may help cushion trauma, especially in cases with treatment-resistant cancers, he says. Goldsby avoids phrases like “no hope” and “nothing else we can do” and reminds parents there is always hope, albeit “hope” that has to be redefined.
“Hope may need to change from a goal of cure to a goal that their child’s life will be exceptionally special and they will leave this world with dignity and without distress.”
But even the best efforts of a child’s medical team may not be good enough, says Goldsby. “We need to be asking parents how we can improve – whether that means having more social workers, establishing a parent-to-parent hot line or researching new ways of providing optimal care for parents.”
Coping tips for parents
— Focus on today and not the future, and on what you can control versus what you cannot.
— Recognize depression triggers: anniversaries of a diagnosis, your child’s birthday or doctor appointments.
— When seeking support, differentiate between those who give it and those who drain your energy.
— Reach out to other parents who have a child with a similar diagnosis.
— Get involved in an advocacy group for your child’s disease.
— Set up a website, with an organization such as Caringbridge.com, so that you can control information about your child’s health.