Childhood Cancer: A Parent's Guide to Solid Tumor Cancersby Honna Janes-Hodder, Nancy Keene
This second edition of the most complete parent guide available, features detailed and precise medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalization, family and friends,
This second edition of the most complete parent guide available, features detailed and precise medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement.
Woven among the medical details and the practical advice are the voices of parents and children who have lived with cancer and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline. Obtaining a basic understanding of topics such as medical terminology, how drugs work, common side effects of chemotherapy, and how to work more effectively with medical personnel can only improve the quality of life for the whole family suffering along with their child. Having parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations can be a tremendous comfort. Just knowing that there are other kids on chemotherapy who refuse to eat anything but tacos or who have frequent rages can make one feel less alone.
Parents who read this book will encounter medical facts simply explained, advice to ease their daily lives, and tools to be strong advocates for their child. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.
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A Parent's Guide to Solid Tumor Cancers
By Honna Janes-Hodder, Nancy Keene, Linda Lamb
O'Reilly Media, Inc.Copyright © 2002 O'Reilly Media, Inc.
All rights reserved.
CANCER IS A WORD THAT evokes many images and emotions. To hear this word used in the same sentence as your child's name is terrifying. From that point forward, life will never be the same. Families are forced into the childhood cancer realm, a world often described as an emotional roller coaster ride in the dark. Once the initial shock of diagnosis has passed, however, the reality that most children with cancer are cured provides strength and hope.
Signs and symptoms
Cancer begins with the transformation of a single cell. The malignant changes that occur in these renegade cells can cause several signs and symptoms, many of which mimic common childhood illnesses.
Parents are usually the first to notice that something is wrong with their child. Occasionally, a diagnosis of cancer is based on chance findings during well baby visits to the pediatrician. Rarely, it is discovered accidentally on an x-ray done for other reasons.
Any deviation from the child's normal behavior or health that persists or is not easily explained gives reason for further investigation by the pediatrician. The following are some of the signs and symptoms that may indicate the presence of childhood cancer:
Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, the back, or legs
Lump, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising or bleeding
A whitish color behind the pupil
Nausea that persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes that occur suddenly and persist
Recurrent or persistent fevers
The day that I took Cassandra (age 5) to the pediatrician, I had assumed she would be sent home on antibiotics for some type of infection. She had been complaining of pain in her left knee and had developed a large lump on her left buttock. Instead, we left with instructions for her to eat nothing, since she was going to be sedated the following morning for some scans at the hospital. From that point on, things happened very fast. I remember only bits and pieces of those first few days at the hospital. I was told that Cassandra had rhabdomyosarcoma, that the following day they would do a biopsy and implant a central catheter, and that chemotherapy would be started as soon as possible.
Most parents react to their concerns by taking their child to a doctor, as Cassandra's parents did. Usually, the doctor performs a physical exam and may order a complete blood count (CBC) or x-rays. Sometimes the diagnosis is not as easy and fast as Cassandra's.
When Hailee was a baby, we noticed that sometimes her eye appeared white and sometimes it looked reddish. We were worried, but the pediatrician said that she was healthy. He eventually gave us a referral to see an ophthalmologist when we insisted. Since he didn't feel it was an emergency, we had to wait three months to see the eye specialist, who diagnosed her unilateral retinoblastoma. By that time, Hailee's retina was detached, and her eye had to be enucleated. I remember feeling completely shocked when the specialist said that she had a disease that would kill her if left untreated. We were angry, because for several months we had been taking her to the pediatrician, and even told him about a picture that had been taken of Hailee that showed an odd white reflex in her eye. Still, he felt that there was nothing wrong. If it had been diagnosed sooner, we might have been able to save her eye.
Where should your child receive treatment?
After a tentative diagnosis of cancer, most physicians refer the family for further tests and treatment to the closest major medical center with expertise in treating children with cancer. It is very important that the child with cancer be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, specialized surgeons and pathologists, pediatric nurse practitioners, child life specialists, pediatric radiologists, rehabilitation specialists, education specialists, and social workers. State-of-the-art treatment is provided at these institutions, offering your child the best chance for remission (disappearance of the disease in response to treatment) and ultimately, cure.
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.
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 pre-existing 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.
Children and teens' emotional responses to diagnosis are discussed in Chapter 24, Feelings, Communication, and Behavior.
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 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.
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 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 silkscreen 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 is a common 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 at 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 after 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 or nurse practitioners.
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:
Share your feelings with spouse or close friends.
Discuss feelings with clergy or church members.
Re-examine your faith.
Know that anger at God is normal.
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 workplace 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. For further information, see Chapter 4, Forming a Partnership with the Medical Team.
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.
Excerpted from Childhood Cancer by Honna Janes-Hodder, Nancy Keene, Linda Lamb. Copyright © 2002 O'Reilly Media, Inc.. Excerpted by permission of O'Reilly Media, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Meet the Author
Honna Janes-Hodder's youngest son Matthew was diagnosed with neuroblastoma on his third birthday, and passed away at age seven on September 3, 1997. She loved, cared for, and advocated for Matthew during his long struggle with cancer. She lives with her husband, 14-year-old son, and 11-year-old daughter in beautiful Paradise, Newfoundland, and Labrador, Canada. Honna is founder of ChildCan, The Childhood Cancer Research Association of Newfoundland and Labrador, Inc., and president of the International Pediatric Cancer Alliance, Inc. Honna manages most of the pediatric discussion groups for ACOR, the Association of Cancer Online Resources, Inc. ACOR, based in New York, provides accurate and timely medical support and information for all those affected by cancer, in both the pediatric and adult communities. She is the administrator of five online discussion groups, providing support and reliable information to families dealing with childhood cancers globally. In addition, Honna sits on the Public Issues Committee for the Newfoundland and Labrador division of the Canadian Cancer Society and writes a regular health section for a national newspaper in Canada. Honna spends a great deal of time advocating on behalf of children diagnosed with cancer. She does not view this as a job, but as an important part of her identity. Honna attends Memorial University of Newfoundland as a part-time student when time permits, working toward a Ph.D. in biochemistry. Honna and Nancy were two of the first five people appointed as patient advocates to the Children's Cancer Group (CCG), a research organization consisting of pediatric cancer specialists from Canada, the United States, and Australia. They attend CCG meetings and facilitate communication between CCG investigators and the patient community.
Nancy Keene has written or co-authored five health books for families. She is co-creator of the Patient-Centered Guides series and Editor of pediatric titles. Nancy is a tireless advocate for childrens health issues, including pediatric clinical trials, childhood cancer, late effects of childhood cancer treatments, pediatric pain relief, and emotional support for families. She frequently speaks for professional and parent groups and works on/with national pediatric advocacy organizations and committees.
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