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Parents' Responses to Diagnosis The following excerpt is taken from Chapter One of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care. Physical responses
Parental illness is a very common event. To attempt to prevent its occurrence, it is helpful to try to eat nutritious meals, get a break from your child's bedside to take a walk outdoors, and find time to sleep. Care needs to be taken not to overuse drugs, tobacco, or alcohol. Whereas physical illnesses usually end after a period of adjustment, emotional effects continue throughout treatment. Emotional responses The shock of diagnosis results in an overwhelming number of intense emotions. The length of time people experience each of these feelings greatly differs, depending on preexisting emotional issues and coping ability. These preexisting states vary from person to person, with some whose worlds are stable and good, better able to move quickly through powerful emotions than those who are also dealing with other crises. Many of these emotions reappear at different times during the child's treatment. Some of the feelings that parents experience are described below. Confusion and numbness In their anguish, most parents remember only bits and
pieces from the doctor's early explanations about their child's disease. This dreamlike
state is an almost universal response to shock. The brain provides protective layers of
numbness and confusion to prevent emotional overload. This allows parents to examine
information in smaller, less threatening pieces. Oncologists understand this phenomenon
and are usually quite willing to repeat information as often as necessary. It is sometimes
helpful to write down instructions, record them on a small tape recorder, or ask a friend
to help keep track of all the new and complex information.
Denial In the first few days after diagnosis, many parents use denial to shield themselves from the terrifying situation. They simply cannot believe that their child has a life-threatening illness. In order to convince themselves that the diagnosis is not a mistake, some parents find comfort in seeking a second opinion. Denial may serve as a useful method to survive the first few days after diagnosis, but a gradual acceptance must occur so that the family can begin to make the necessary adjustments to cancer treatment. Life has dramatically changed. Once parents accept the doctor's encouraging statistics, push their fears into the background, and begin to believe that their child will survive, they will be better able to provide support for their child and family.
Guilt Guilt is a common and normal reaction to childhood leukemia. Parents feel that they have failed to protect their child, and blame themselves. It is especially difficult because the cause of their child's cancer cannot be explained. There are questions: How could we have prevented this? What did we do wrong? How did we miss the signs? Why didn't we bring her to the doctor sooner? Why didn't we insist that the doctor do blood work? Did he inherit this from me? Why didn't we live in a safer place? Maybe I shouldn't have let him drink the well water. Was it because of the fumes from painting the house? Why? Why? Why? It may be difficult to accept, but parents need to remember that nothing they did caused their child's illness. One method to reduce the burden of guilt is to seek information about the causes of leukemia from medical staff and books. Nancy Roach describes some of these feelings in her booklet The Last Day of April:
Some parents want to do everything possible to make sure that the child's environment
does not pose additional risk. One mother explained how she checked on the possibility of
electromagnetic fields in her home and yard:
And another parent's thought:
Fear and helplessness A diagnosis of leukemia strips parents of control over their child's daily life. Previously, parents established routines and rules which defined family life. Children woke up, washed and dressed, ate breakfast, perhaps attended day care or school, played with friends, and performed chores. Life was predictable. Suddenly, the family is thrust into a new world populated by an ever changing cast of characters (interns, residents, fellows, oncologists, IV teams, nurses, social workers) and containing a new language (medical terminology): a new world full of hospitalizations, procedures, and drugs. Until adjustment begins, parents sometimes feel utterly helpless. Physicians whom they have never met are making life-or-death decisions for their child. Even if parents are comfortable in a hospital environment, feelings of helplessness may develop because there is simply not enough time in the day to care for a very sick child, deal with their own changing emotions, begin to educate themselves about the disease, notify friends and family, make job decisions, and restructure the family to deal with the crisis. Parents also experience different levels of anxiety, including fear and panic. Many develop problems sleeping and feel overwhelmed by fears of what the future holds. Their world has turned inside out-they have gone from adults in control of their lives to helpless people who cannot protect their child. Many parents state that helplessness begins to disappear when a sense of reality
returns. They begin to make decisions, study their options, learn about the disease, and
grow comfortable with the hospital and staff. However, feelings of fear, panic, and
anxiety periodically erupt for many parents at varying times throughout their child's
treatment.
Anger Anger is a universal response to the diagnosis of cancer.
It is nobody's fault that children are stricken with cancer. Since parents cannot direct their anger at the cancer, they target doctors, nurses, spouses, siblings, and sometimes even the ill child. Because anger directed at other people can be very destructive, it is necessary to devise ways to express the anger. Some suggestions from parents for managing anger follow. Anger at healthcare team:
Anger at family:
Anger at God:
It is important to remember that angry feelings are normal and expected. Sadness and grief Parents feel an acute sense of loss when their child is diagnosed with leukemia. They feel unprepared to cope with the possibility of death and fear that they may simply not be able to deal with the enormity of the problems facing the family. Parents describe feeling engulfed by sadness. Grieving for the child is common, even when the prognosis is good. Parents grieve the loss of normalcy, the realization that life will never be the same. They grieve the loss of their dreams and aspirations for their child. Shame and embarrassment are also felt by some parents. Cultural background, individual coping styles, basic temperament, and family dynamics all affect the type of emotions experienced.
Cynthia Krumme's book Having Leukemia Isn't So Bad. Of Course It Wouldn't Be My
First Choice describes a message tacked on the Massachusetts General Clinic bulletin
board:
Parents travel a tumultuous emotional path where overwhelming emotions subside only to resurface later. All of these are normal, common responses to a catastrophic event. For many parents, these strong emotions begin to fade as hope grows. Hope After being buffeted by illness, anger, fear, sadness, grief, and guilt, most parents welcome the growth of hope. Hope is the belief in a better tomorrow. Hope sustains the will to live and gives the strength to endure each trial. Hope is not a way around, it is a way through. The majority of children conquer childhood leukemia and live long and happy lives. There is reason for hope. Many families discover a renewed sense of both the fragility and beauty of life after the diagnosis. Outpourings of love and support from family and friends provide comfort and sustenance. Many parents speak of a renewed appreciation for life and consider each day with their child as a precious gift. A Japanese proverb says: "Daylight will peep through a very small hole.
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