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Childhood Leukemia


That first week, every time my son threw up, so did I.


[M]ost parents remember only bits and pieces from the doctor's early explanations about their child's disease.


In the first few days after diagnosis, many parents use denial to shield themselves from the terrifying situation.


[P]arents need to remember that nothing they did caused their child's illness.


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


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


A Japanese proverb says: "Daylight will peep through a very small hole."

Parents' Responses to Diagnosis


The following excerpt is taken from Chapter One of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 3rd Edition by Nancy Keene, copyright 2002 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

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 may expose them to 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 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.
The doctor ordered a CBC from the lab. All the while I'm still convinced my son's bleeding gums were caused by his six-year molars. The rest happened so fast it's hard to recount. We ended up at the hospital getting a bone marrow test. My husband and I tried to tell the doctor that we would go home and let Stephen rest and that when we came back in the morning they could do another CBC. We were positive that his cell counts would go up in the morning. He said that we didn't have until morning. He said Stephen was very, very sick. After the bone marrow test, the doctor called us in a room and said that Stephen had leukemia. After that word I couldn't hear a thing. My ears were ringing, and my body was numb. There were tears in my eyes. It was actually a physical reaction. I asked him to stop explaining because I couldn't hear him. I asked for a book and went back to the hospital room to read and to cry.

• • • • •

For the longest time (in fact still, three years later) I can hear the doctor's voice on the phone telling me that Brent had leukemia. I remember every tiny detail of that whole day, until we got to the hospital, and then the days blur.

• • • • •

I felt like I was standing on a rug that was suddenly yanked out from under me. I found myself sitting there on the floor, and I just didn't know how to get up.

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.
After our daughter's diagnosis, we had to drive two hours to the hospital. My husband and I talked about leukemia the entire trip, and, I felt, started to come to grips with the illness. However, after the IV, the x-rays, and the blood transfusions, he became extremely upset that they were going to admit her. He thought that we could just go home and it would be finished. I had to say, "This will be our life for years."

• • • • •

My husband and I sat and waited in silence until the doctor came back with the test results. The next thing I knew we were in his office with a primary nurse, a social worker, and a resident listening to the sickening news that our son had leukemia. I couldn't stop crying, and just wanted to grab my two-year-old son and run far, far away.

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:

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 leukemic children had been exposed to an entirely different environment.
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:
We have two transformers on our property. After Preston's diagnosis, I wanted to check for electromagnetic fields (EMFs). I called our power company about the free service they offer to check EMFs in the home and yard of customers. After my call, they came out promptly with testing equipment. Surprisingly, the highest readings that they found were from Preston's alarm clock next to his bed and some baseboard heaters with fans in our kitchen. These emitted far higher EMFs than the transformers did.
And another parent's thought:
A year before my daughter's diagnosis, we moved into a rural area and relied on water from a well. When we moved in, I had the water tested for all known contaminants. However, within a year, both of our dogs became ill, and my daughter was diagnosed with leukemia. I decided that for my peace of mind, we should buy water which had been extensively treated.

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 everchanging 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.

A friend who had lost her husband to cancer called soon after my daughter's diagnosis with acute lymphoblastic leukemia (ALL ). I told her that I felt helpless, confused, overwhelmed, and teary. I cried, "When will I be my usual competent self again?" She assured me that the beginning was the worst, but to expect to be on an emotional roller coaster for the entire two years of treatment. She was right.

Anger

Anger is a universal response to the diagnosis of cancer.
We were sent to the emergency room after my son's diagnosis with leukemia. After the inevitable delays, an IV was started and chest x-rays taken. I struggled to remain calm to help my son, but inside I was screaming NO NO NO. A resident patted me on the shoulder and said, "We'll check him out to make sure that everything is okay." I started to sob. She looked surprised and asked what was the matter. I said "He's not okay, and he won't be okay for a long time. He has cancer." I realized later that she was trying to comfort me, but I was very angry. Surprisingly, by the end of my son's hospitalization, we trusted and felt very close to that resident.
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, sblings, 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:

  • Talk with one of the nurses

  • Discuss feelings with psychologists and/or social workers

  • Talk with parents of other ill children
Anger at family:
  • Discuss feelings with psychologists and/or social workers

  • Run, walk, lift weights, or do other physical exercise

  • Do yoga or relaxation exercises

  • Keep a journal or tape-record feelings

  • Cry in the shower or pound the walls

  • Listen to music

  • Read other people's stories about cancer

  • Talk with friends

  • Talk with parents of ill children

  • Join or start a support group

  • Improve communication within family

  • Try individual or family counseling

  • Live one day at a time
Anger at God:
  • Discuss feelings with clergymen or church members

  • Discuss feelings with spouse and/or friends

  • Pray
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.
Even though my daughter's prognosis was good, I would find myself daydreaming about her funeral. Certain songs especially triggered this feeling. I invariably burst into tears because I was ashamed to be thinking/planning a funeral when I just could not imagine my life without her. When these feelings washed over me, I could actually feel a physical sensation of my heart ripping.
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:
How do I feel? Don't ask! - aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial, and anti-social behavior - I feel fine - .Thank you.
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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