About Feelings - This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers

Questions Commonly Asked about Cancer in Children and Teenagers

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ABOUT FEELINGS

HOW DO YOUNG PEOPLE REACT WHEN THEIR BROTHER OR SISTER HAS CANCER?

Siblings (brothers and sisters) of the child or teenager with cancer also experience stress and fear at the time of diagnosis and throughout treatment. They are affected by tension they see in their parents and changes in the family routine. Siblings may have to stay with friends or relatives while their parents are at the hospital or clinic, and parents may be so consumed by the care of the child who is ill that they unintentionally neglect their other children's needs. This can lead to a sense of abandonment, as well as to feelings of jealousy and resentment. Siblings also fear losing their brother or sister. They may experience guilt if they assume some responsibility for the cancer. It is not uncommon for a sibling to believe that an unkind verbal or physical exchange led to the cancer.

As they are not always able to articulate their feelings, siblings may display their emotions through behaviour, such as school problems, sleep disturbance, withdrawal or angry outbursts.(23) They may appear to cope well during the active treatment phase of the child's illness, only to "act out" when the child goes into remission. They may perceive that now is a more appropriate time for them to ventilate pent-up feelings; or they may be trying to communicate that they can no longer wait to have their needs met.

Some of the potential problems with siblings can be avoided by their early education and involvement in the care of the child who is ill. Siblings need age-appropriate explanations of the illness and what therapy will entail. Some medical information is necessary, so that they realize that nothing they did or did not do caused the cancer, and that they will not get it from their brother or sister. Books for siblings - some written by other siblings of children with cancer - are available and can be powerful aids to adjustment. Some cancer treatment centres offer programs for siblings aimed at enhancing their adjustment and reinforcing their importance within the family. In many areas of Canada there are special summer camps for siblings.

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HOW DO FAMILIES COPE WHEN CURE IS NOT POSSIBLE?

Despite tremendous successes in the treatment of childhood cancer, not all children and teenagers will remain disease-free after the initial treatment. Sometimes cancer recurs; this is called a relapse. A first relapse is often successfully treated but repeated relapses reduce the likelihood of cure. A relapse can be as devastating as, or worse than, the initial diagnosis. With a relapse, parents face the painful, terrifying reality that they may lose their child.

This is a time of crisis and ambivalence. The decision to be made is whether to continue to try to achieve a remission or to replace this hope with the hope for comfort for the child and a special time together. Each parent, and the child who is old enough to understand, requires differing amounts of time to reach a decision about how to proceed. Careful and frequent discussions with the medical team, as well as with trusted friends and relatives, may help clarify issues and bring some peace-of-mind.(101) At this time, some young patients and their parents continue with traditional therapies; others explore experimental or non-medical therapies. Some discontinue anticancer treatments and shift their focus from cure to meeting their family's specific needs during the remaining time they have together.

These agonizing decisions are not without great emotional cost. Feelings of guilt may surface if parents feel they are giving up too soon or if they have consented to therapy which has resulted in their child's spending precious days in hospital without any hope of being successfully treated. In some instances, there is no decision to be made; the option for further therapy has been removed because of a child's medical condition and the extent of the disease process. Quality of life, spirituality and the struggle for meaning are issues many parents and young people explore at this time.

Care of a child or teenager who is dying may last a few days or extend over weeks or months. During this time, parents desperately need information about what to anticipate medically and what resources are available to help them meet the needs of their family. These needs include pain and symptom control for the child who is ill and care for siblings. Many families choose to have their child die at home where he or she feels most comfortable and can be surrounded by family. In these situations, families need close liaison with home care medical teams to ensure that their child is as comfortable as possible. Expert professional home help is often required, as parents cannot be expected to provide all the ongoing care and treatment needed. They can feel isolated and vulnerable in such an unfamiliar circumstance. The unpredictability of the disease process can leave them physically and emotionally exhausted.

The hospital or a hospice may be the only alternative for a child or teenager whose disease does not allow time at home, or where parents fear they will not be able to cope. It is important that the staff and parents eliminate unnecessary and painful hospital procedures and routines so that the young patient may have optimal quality of life under the circumstances. Parents may need to remind staff of their desire for privacy and uninterrupted time with their child. Palliative care staff at the hospital or hospice can help families through this most difficult time.

How each family handles a child's impending death is unique. Professionals generally feel that children and their parents need the opportunity to share their feelings and talk about what to anticipate; however, these discussions can never be forced. Some children and teenagers who are dying want to make wills, give away favourite personal belongings, or say goodbye to special people. Some tell their parents their wishes about a funeral or memorial service. Others, even when given the opportunity to talk with those they love and trust, choose not to. Their play, drawings, or conversations may be filled with death themes, yet they do not take part in any direct discussion. There is no one answer to how families cope best with this painful time; each family must do what feels right.

In their efforts to protect their child and themselves from the intense emotional pain of facing death, parents may inadvertently allow a conspiracy of silence. Everybody knows what is happening, but nobody feels permission to talk about it. This can be very sad. Young people with cancer usually become very familiar with their disease status. They are very good judges of their bodies and often know, without being told, that they are dying. Some will indicate their awareness of what is happening through non-verbal or indirect verbal cues. Young people, denied the opportunity to share if they want to, may be left with unexpressed important thoughts and feelings, and their dying may be very lonely.

As much as parents may feel they have accepted and prepared for the death, this is seldom the case. Caring for other children in the family, making funeral arrangements and handling endless details increase and prolong the distress and fatigue they experience. Relief that their child's pain is over is often an immediate comfort, but longing and indescribable anguish are ever-present. Many parents, years after the death of their child, report that the mourning and grieving never fully subside. They learn to live in a new way; there is no returning to life before cancer.(36,37)

 

 

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