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Childhood Cancer 2nd edition,
Childhood Cancer


Most parents remember only bits and pieces of the doctor's early explanations about their child's disease.


Parents need to remember that nothing they consciously did caused their child's illness.


Many parents state that helplessness begins to disappear when a sense of reality returns.


Discovering healthy ways to vent anger is a vital tool for all parents.


Parents grieve the loss of normalcy, the realization that life will never be the same.

Parents' Responses to Diagnosis


The following excerpt is taken from Chapter One of Childhood Cancer: A Parent's Guide to Solid Tumor Cancers , 2nd Edition by Honna Janes-Hodder & Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. 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.

Many parents become physically ill in the weeks following diagnosis. This is not surprising, given that most parents stop eating or grab only fast food, normal sleep patterns are a thing of the past, and staying in the hospital exposes them to all sorts of illnesses. Every waking moment is filled with excruciating emotional stress, which makes the physical stress so much more potent.

The second week in the hospital I developed a ferocious sore throat, runny nose, and bad cough. Her counts were on the way down, and they ordered me out of the hospital until I was well. It was agony.

• • • • •

That first week, every time my son threw up, so did I. I also had almost uncontrollable diarrhea. Every new stressful event in the hospital just dissolved my gut; I could feel it happening. Thank God this faded away after a few weeks.

Parental illness is a very common event. To prevent this, 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. Take care not to overuse drugs, tobacco, or alcohol in an attempt to control anxiety or cope with grief. Whereas physical illnesses usually end or improve 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 strategies. These preexisting states vary from person to person. Those whose worlds are relatively stable are sometimes able to move more 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 in the next sections. All of the emotions described are normal responses to a diagnosis of cancer in a child. 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. 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.

When I left the doctor's office, I was a mass of hysteria. I couldn't breathe and felt as if I was suffocating. Tears were flowing nonstop. I had lost total control of myself and had no idea of how to stop my world from turning upside down.

• • • • •

When the doctor said mass or tumor, I still didn't connect it to cancer or realize the seriousness of her situation.

• • • • •

For a brief moment I stared at the doctor's face and felt totally confused by what he was explaining to me. In an instant that internal chaos was joined with a scream of terror that came from some place inside me that, up until that point, I never knew existed.

Denial

In the first few days after diagnosis, many parents use denial to shield themselves from the reality of the 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 encouraging optimism, push their fears into the background, and begin to believe that their child can survive, they will be better able to provide support for their child and their family.

I walked into the empty hospital playroom and saw my wife clutching Matthew's teddy bear. Her eyes were red and swollen from crying. I had no idea what had happened. A minute later the doctor came into the room with several residents (doctors who are receiving specialized training). He told me that Matthew had cancer and that he was very sick. I remember thinking that there had to have been a mistake. Maybe he was reading the wrong chart? My initial reaction was that it was physically impossible for one of my children to have cancer. Cancer is a disease of the elderly. Kids don't get cancer!

Guilt

Guilt is a common and normal reaction to childhood cancer. 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, in most instances, 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 years of research have so far revealed little about what causes childhood cancer or how to prevent it.

Nancy Roach describes some of these feelings in her booklet The Last Day of April:

Almost as soon as Erin's illness was diagnosed, our self-recrimination began. What had we done to cause this illness? Was I careful enough during pregnancy? We knew radiation was a possible contributor; where had we taken Erin that she might have been exposed? I wondered about the toxic glue used in my advertising work or the silk screen ink used in my artwork. Bob questioned the fumes from some wood preservatives used in a project. We analyzed everything--food, fumes, and TV. Fortunately, most of the guilt feelings were relieved by knowledge and by meeting other parents whose children had been exposed to an entirely different environment.

• • • • •

Knowing that I shouldn't feel guilty doesn't help. Knowing that there probably wasn't anything I could have done to protect my adorable little girl doesn't help. Even if it could be proven that those caustic chlorine fumes and that huge coal pile had nothing to do with her cancer, it wouldn't help.

Fear and helplessness

A diagnosis of childhood cancer strips parents of control over their child's daily life. Previously, parents established routines and rules that 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 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 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 parents have trouble 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.

Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness.

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.

It's not a nice way to have to live. What's waiting around the next corner? That's a scary question. One of my biggest fears is the uncertainty of the future. All that we can do is the best we can and hope that it's enough.

Anger

Anger is a universal response to the diagnosis of life-threatening illness.
Life isn't fair, but yet the sun still comes up each morning. To be angry because your child has cancer is normal. The question is where to direct that anger. Sometimes I feel as if I'm angry with the entire world. In my heart, though, my outrage is directed solely at each and every cancer cell feeding on my child.
Expressing anger is normal and can be cathartic. Attempting to internalize this powerful emotion is usually not possible at the moment of diagnosis. 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:

  • Try to improve communication with doctors.

  • Discuss feelings with one of the nurses.

  • Discuss feelings with social workers.

  • Talk with parents of other ill children, either locally or by joining an on-line support group.
Anger at family:
  • Exercise a little every day.

  • Do yoga or relaxation exercises.

  • Keep a journal or tape-record feelings.

  • Cry in the shower or pound a pillow.

  • Listen to music.

  • Read other people's stories about cancer.

  • Talk with friends.

  • Talk with parents of other ill children.

  • Join or start a support group.

  • Improve communication within family.

  • Try individual or family counseling.

  • Live one day (or sometimes one hour) at a time.
Anger at God:
  • Discuss feelings with spouse or close friends.

  • Discuss feelings with clergy or church members.

  • Re-examine your faith.

  • Know that anger at God is normal.

  • Pray.

  • Give yourself time to heal.
It is important to remember that angry feelings are normal and expected. Discovering healthy ways to vent anger is a vital tool for all parents.

Loss of control

Parents sometimes feel overwhelmed by the sudden loss of control after their child is diagnosed with cancer. This is especially true for parents who are used to having a measure of power and authority in the work place or the home.
My husband had a difficult time after our son was diagnosed with neuroblastoma. We have a traditional marriage, and he was used to his role as provider and protector for the family. It was hard for him to deal with the fact that he couldn't fix everything.
Parents can regain some control over the situation by learning about their child's disease and its treatments. This knowledge can be used to advocate for their child. They can also gain some control by becoming active participants in their child's treatment. They can ask the doctor what tests and appointments are negotiable. They can have a say in what time clinic appointments are, which days to have tests done, what times to give medications, and more.

Sadness and grief

Parents feel an acute sense of loss when their child is diagnosed with cancer. 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.
I have an overwhelming sadness and, unfortunately for me, that means feelings of helplessness. I wish I could muster up a fighting spirit, but I just can't right now.

• • • • •

While I have moments of deep sadness and despair, I try not to let them turn into hours and certainly not days. I am too aware of the fact that I may have the rest of my life to grieve.

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 the majority of 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 cancer 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."

The immediate future

It is important for you to know that you are not alone. Many have traveled the childhood cancer path before you, and, unfortunately, many will follow after you. While it is sad to know that others are forced into this terrifying journey, you can take some small solace from knowing that you are not the only parents to experience these feelings.

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