The Impact of Neuroblastoma on the Patient and Family

The diagnosis of any cancer is devastating news to anyone, but particularly so when it involves a child or teenager – and neuroblastoma. An instant crisis is created in the lives of the family. Normal life is forever redefined. Working parents must take time off to care for their sick child. Siblings need to be considered. The sick child (the patient) becomes the major focus of family time and attention, while other concerns are put on hold. Parents are overwhelmed with detailed and very complex information about the diagnosis of neuroblastoma and treatment. Almost immediately, they must understand enough to give permission for numerous tests and procedures, sign consent forms for treatment, and make important decisions – often life or death -- about their child's care -- all in a very short period of time.

How well parents and family handle their emotions during this time is a reflection of their own life experiences, cultural beliefs, and their individual coping styles in response to major stress. Shock, disbelief, fear, guilt, sadness, despair, anger and grief are very common throughout their neuroblastoma journey. Honestly, just about any feelings could be considered normal for parents and other family during this time.

The Shock of Neuroblastoma on Parents
Neuroblastoma Disbelief and Denial
Fear and Anxiety of Neuroblastoma in Parents
Parent Guilt Associated with Neuroblastoma
Parent Feelings of Sadness and Depression
Parent Anger with Neuroblastoma
The Impact of Neuroblastoma on the Patient and their Siblings
Neuroblastoma Fear and Anxiety
Neuroblastoma Anger and Guilt
Neuroblastoma Sadness and Feelings of Depression

The Shock of Neuroblastoma

No one is ever prepared to hear that their child has a life-threatening illness. At first, depending on their knowledge or personal experience with cancer, they may fear that their child is going to suffer or die. At the very least, they know their family will go through major changes and upheaval. They often describe feeling numb or as if they have been hit over the head. Parents also report feeling confused or being unable to hear, remember, or think clearly when the doctor explains their child's diagnosis or treatment plan. This numbness allows them to slowly get used to the painful feelings that tear through them. It gives parents time to gradually absorb and face these painful emotions and hard decisions.

Neuroblastoma Disbelief and Denial

When parents are first told their child has cancer, it just seems too horrible to believe. Their child may not seem sick enough, or look sick enough, to have such a serious disease. They may question whether the lab could have made a mistake or if the test results are really those of another child. They may wish to check on the reputation of the staff or medical center.
If a diagnosis is hard to make, they may wonder if the medical staff knows as much as they should. They may decide to get a second opinion. The disbelief or denial that strikes at first can help buffer painful feelings. It is also a way for parents to gain time to adjust to the reality of their child's diagnosis and to be sure that their child will get the best treatment. Denial is not a problem unless it gets in the way of timely treatment.

Fear and Anxiety of Neuroblastoma in Parents

It is normal to feel anxious and fearful when facing unfamiliar events and outcomes that are out of our control. And nearly everyone has a fear of cancer. A family's only close encounter with cancer may have been with an older family member (when it might have seemed easier to accept or understand). There may be stories about the problems other family members or friends had with chemotherapy or radiation treatments, or beliefs that having cancer is a death sentence. If a child is diagnosed in a major medical center, parents may believe rumors they have heard that doctors in big hospitals "experiment" on patients.
Since doctors cannot guarantee exactly how each person will respond to cancer treatment, fear of the death of a child or teen is real. Trusting the knowledge and skill of others to protect the life of a much-loved child is frightening. Protecting the child is the normally the parent's job. Now a parent must trust others to take care of their children. That's hard to do. Also, facing major changes in daily life is upsetting, and parents worry that they may not be up to all the tasks that will be asked of them. They may also be worried about their child getting through all the needed treatment. They may be concerned about how treatment will affect their child's body and self-esteem. Fear of intensive treatment and an uncertain future are all normal.

Parent Guilt Associated with Neuroblastoma

Questions of guilt come up soon after parents accept that their child really does have cancer. Parents have the major task of protecting their child from danger. They may question what they might have done to contribute to their child having this life-threatening disease. Could this be "payback" for past mistakes or the result of drug or alcohol abuse? Has their smoking caused the cancer? Mothers sometimes wonder if something they did or failed to do during pregnancy may have made a difference. Those with cancer in their families might think that one parent or the other has "bad" genes. They may question the safety of where they live, their water supply, or wonder about toxins in the environment or in their home. They may wonder whether something related to their job might have caused the cancer.

Parents also voice guilt about not paying enough attention to their child's symptoms. They worry that they did not get to the doctor quickly enough, or that they did not demand a specialist see their child when the symptoms didn't go away. Although it is normal to try to understand the causes of a problem, the fact is that right now no one knows exactly what causes most cancers. Parents are not at fault for their child's cancer. Most children are diagnosed and begin treatment quickly. If you feel guilty, talk to someone on the cancer treatment team about your concerns. It is important not to let guilty feelings distract you from the many tasks you face when your child has cancer.

Parent Feeling Sadness and Depression

Of course you will feel sad when your child is diagnosed with cancer. Every parent has hopes and dreams that their children's lives will be healthy, happy, and carefree. Cancer and its treatment change that dream. Parents will grieve for the loss of some of those hopes. In grieving, they may feel hopeless about their child's recovery. They are also sad when they think about the hard days of treatment that lie ahead. The intensity of their feelings often matches their child's outlook for recovery, but it also reflects their own temperament and personality. One parent may be more naturally optimistic, while another may react to any life problem with more fear of bad outcomes.

Parents may find it hard to eat or sleep at first. They may not have the energy they need for routine daily tasks or for facing all they need to do now that their child has cancer. Parents often report feeling overwhelmed by their child's diagnosis. Unfortunately, parents cannot be spared these painful and unpleasant feelings and will have them at times throughout their child's illness.

But parents and families are usually able to adjust to the changes in their lives, even with these painful feelings. They work to find ways to maintain some quality of life for themselves, the rest of their family, and their sick child during this battle with cancer.

Parent Anger with Neuroblastoma

The fact that cancer threatens the life of an innocent child often makes parents angry at the cruel and random injustice of life. When someone we love is attacked, even by illness, it is easy to want to blame someone, or ask "Why me?" or "Why us?" This anger is sometimes directed at the doctors who made the diagnosis or who explained the difficult treatment. For others, God is the object of rage as parents question a world in which children become ill and suffer and die. Parents also feel upset at the experiences they know their child will face, including the diagnostic tests and invasive procedures.

The daily frustrations of dealing with a large and complex health care system, strange places, and many different care providers can also be sources of anger. Parents may resent one another over past or current issues that now affect their child's treatment. Anger also may be directed at family or friends who make thoughtless remarks or who are too busy to provide support.

Parents are sometimes surprised and guilt-ridden to notice that they are even angry with the child whose illness is causing so many problems for the family or who is not cooperating with the doctors and nurses. Some parents hide their anger or even deny that they feel that way since they believe that such feelings are "not nice". Others express their anger in explosive and hostile ways and take it out on other people. Sometimes other children in the family become convenient targets for that anger. Since parents and the care providers must work together to help the child or teen deal with the cancer and its treatment, it is important to find healthy ways to express anger at the unfairness of it all. It is also important to find healthy ways to resolve valid complaints.

Children and teenagers often respond to news of a cancer diagnosis with a range of emotions which reflect those of their parents. Their feelings vary with what each child goes through as a result of the diagnosis. Patients may become ill very quickly, have a lot of pain, or have many diagnostic tests. Or they may not feel sick at all. Some may need to travel far from home to see the doctors. Others may wait days or weeks to learn what is actually wrong with them. Some may miss school for a long time, or have to give up sports or other activities. Brothers and sisters may face sudden long separations from parents and each other. The family's usual life and daily routines are changed.

The child's age, development, and personality also affect their responses. For example, a toddler with cancer may fear being away from parents for scans and tests. School age children may understand what's going on, but still be angry and sad over what they've lost. Some teens may notice how the cancer affects their identity or sense of self. Others may be angry and rebel during diagnosis and treatment.

Each child is different, though there are a few common themes based on the age of the child. Keep in mind that the lists below are just some of the more common ways that children respond. There are many others. All responses call for patience and creative work with the cancer team to help the child through it.

Infants and very young children with cancer might:
• fear being separated from parents
• be afraid of and upset by painful medical procedures
• yell, scream, throw tantrums, refuse to cooperate, or withdraw
• cling to parents
• become aggressive
• be angry or sad that they are restricted in their normal play and exploration
School age children with cancer might:
• be upset by disruption of school
• miss seeing classmates and friends
• show anger and sadness over the loss of health, school, and normal life
• look for more emotional and social support from family and friends

Teens with cancer might:
• be upset by the disruption of school and their activities with friends
• feel their independence is threatened
• show intense emotional responses
• need support from friends, school contacts, and others who are important to them
• focus on the meaning of life and the cancer's effect on their identity
• joke around about their cancer, distract from it, or try to "think positively"
• take risks that could cause problems
• rebel against parents, doctors, and treatments

The Impact of Neuroblastoma on the Patient and their Siblings

Siblings may feel shock, sadness, fear, and confusion over what to expect and what is expected of them during the illness. It is common for them to feel they somehow caused the cancer with angry thoughts or by wishing the child ill. While their brother or sister is in treatment, they often feel lonely, less valued, and jealous of the attention the sick child is getting. They may resent the changes in their lives, and then feel guilty about that as well. Siblings may have trouble with memory and concentration, which can cause school problems. Sometimes they deny or minimize these responses because they don't want to add to their parents' distress.

Neuroblastoma Fear and Anxiety

The child with neuroblastoma
Children with cancer are often as stunned as their parents by the sudden move from health to illness and the unwelcome tests and procedures needed to get a diagnosis. If the child needs to go into the hospital, it may be a new experience. It could be scary and overwhelming. Fear and anxiety are also the main emotions that both patients and siblings face after diagnosis.
It is very frightening to be told your body isn't working right, and that you have cancer. It is normal for the child or teen to be afraid of new and often painful experiences. It is hard to face having blood drawn, biopsies, bone marrow aspirations, lumbar punctures, scans, or other tests. Some kids fear they will not be able to handle the treatment. It is also upsetting to see your parents and relatives worried by all that is happening. It is disturbing to have to deal with a strange place and many new people. It is worrisome to think about what the treatment will do to your body, how you will look and feel, and how your friends will react. It is often terrifying to think that you might die.

Siblings of the child with neuroblastoma
Brothers and sisters have their own fears. Sometimes they are afraid that they also might get cancer. They may pick up on parents' anxiety and not understand what's going on -- they may not be sure what cancer is but they know it is bad news. They may be afraid to visit the hospital or see their brother or sister sick or in pain. They worry that they do not have the whole the truth about what is happening. They are concerned when they see their parents distressed and fearful. They are upset at being separated from mom or dad and being in the care of relatives or friends. They worry about going to school and maybe facing questions they cannot answer about their sick brother or sister. They are afraid their sibling will die.

Neuroblastoma Anger and Guilt

The Child with Neuroblastoma
Anger and guilt are normal reactions of both the patient and his or her siblings. Patients question why this has happened to them. It is not fair! They are angry at all the things they have to do -- be poked and prodded, swallow nasty-tasting liquids, take big pills, talk to lots of strangers, lie in scary-looking machines, have their privacy invaded, and be kept in a hospital.

Feelings of guilt are also common. Children often worry that maybe they have cancer because they were bad in some way. Maybe something they did caused the cancer -- telling lies, smoking, trying drugs, having sex, or even having bad thoughts. They also may feel guilty that they are responsible for this family crisis and may be concerned about their parents. They feel guilty that they are causing all this worry and trouble that is painful for the adults who are important to them. This may be especially tough when parents are in conflict, divorced, or have other serious problems or stresses.

Siblings of the Child with Neuroblastoma
Siblings may also be angry that this has happened to their brother or sister. They are angry that life for them is disrupted and that things are never going to be the same. They are angry that their parents may not seem to have time for them, or don't seem to care about how unhappy they are. They may be angry that their brother or sister is getting all the attention. They may feel angry with their sibling for being ill and causing so much worry and trouble for everyone in the family.

They often feel guilty about their anger when their sibling is going through so much and their parents are so stressed. They may feel guilt about things that they did or said to the child with cancer. Some may feel guilt just because they are healthy and their brother or sister is sick. They may also worry that something they thought or did might have caused the cancer. It is rare that the child is able to say these kinds of things to the parents, but some may act it out by rebelling or being the "bad child"-- in contrast to the "good child" who has cancer.

Neuroblastoma Sadness and Feelings of Depression

The Child with Neuroblastoma
Feelings of sadness and depression are also common in children with cancer. They may realize that they will not be able to do some things that are important to them, such as dancing or sports, for a long time -- if ever. They feel sad when they realize they are now different from their peers. They may feel depressed when they think about the months of treatment facing them and how it might interfere with their life. They think about the changes in their body that will result from cancer and its treatment, and feel depressed about how they will look and how their friends may see them. They may also feel hopeless, and be afraid that the treatment will not work.

Siblings of the Child with Neuroblastoma
Siblings are also sad as they begin to realize that their brother or sister is really very sick and will need serious treatment. They feel sad as they witness their parents' distress, too. Younger children miss the parent who usually provides most day-to-day care when that parent is unable to return home for days or weeks after the diagnosis. Adolescents understand the risk to their sibling's life and may be depressed by a new awareness that life and health can be fragile. All young people are saddened by the changes in family life that often occur.

Both patients and siblings express these normal feelings based on age, their nature, level of intelligence, maturity, and coping style. Most young people are still learning to name their feelings and talk about these feelings to others. They are alert to the moods and expression of feelings of those around them, particularly parents. They are not always able or willing to talk about their fear, anxiety, guilt, or sadness, but may show their feelings through body language or behavior. Sometimes they look to parents and other key family members for cues about how to deal with their troubled feelings.

Although most children with cancer and their siblings seem able to cope, there are times when it gets to be too much. If a child in the family seems to be having trouble, it may mean a more serious problem than a normal, sad response to cancer. Extra help is needed if a child:
• is unable to handle the feelings of sadness
• feels sad all the time
• cannot be comforted
• admits to thinking of suicide
• feels extra irritable
• becomes very angry very quickly
• has changing grades
• withdraws or goes into isolation
• acts very differently from the usual
• has appetite changes (only count those that are not due to cancer treatment)
• has low energy
• shows less interest in activities
• has trouble concentrating
• cries a lot
• has trouble sleeping

These are signs that should be discussed with the youngster's doctor. You will want to talk with a mental health counselor or social worker at the cancer center who can evaluate the child and make sure that the child gets the kind of help he or she needs. Rarely, a child may need to see a psychiatrist for medicines or counseling.