Download PTSD shows up in parents of kids with cancer

PTSD shows up in parents of kids with
cancer
PTSD shows up in parents of kids with
cancer
Suzanne Leigh, Special to The Chronicle
Monday, February 7, 2011
Lance Iversen / The Chronicle
Melanie Wellbeloved and her son Mason, who was treated for a brain tumor.
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."
Symptoms
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 neverending 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 lowgrade 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.
Compiled by pediatric oncology social workers at UCSF Benioff Children's Hospital
E-mail comments to [email protected] .
This article appeared on page E - 1 of the San Francisco Chronicle
Read more: http://www.sfgate.com/cgibin/article.cgi?f=/c/a/2011/02/06/DD7U1HCPMG.DTL&ao=2#ixzz1FBM1CP2e