Emotional responses to blood cancer in children


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 strategies. These preexisting states vary from person to person. Those whose worlds are relatively stable tend to be 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 treat- ment. Some of the feelings that parents experience are described in the next sections. All of the emotions described are normal responses to a diagnosis of cancer in a child.

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 strategies. These preexisting states vary from person to person. Those whose worlds are relatively stable tend to be 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 treat- ment. Some of the feelings that parents experience are described in the next sections. All of the emotions described are normal responses to a diagnosis of cancer in a child.
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. Pediatric oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Many centers have nurse practitioners who translate medical information into understandable language and answer questions.
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. 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 prognosis, push their fears into the background, and begin to believe that their child will survive, they will be better able to advocate 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 paint- ing the house? Why? Why? Why? It may be difficult to accept, but parents need to understand that it is very unlikely that they did anything to cause their child’s illness.

Fear and helplessness


A diagnosis of leukemia strips parents of control over their child’s daily life. Previ- ously, 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 everchanging cast of characters (interns, residents, fellows, pediatric oncologists, IV teams, nurses, social workers) and contain- ing a new language (medical terminology); a new world full of hospitalizations, procedures, and drugs.

Until adjustment begins, parents sometimes feel utterly helpless. Physicians they have never met are presenting treatment options for their child. Even if parents are com- fortable 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.