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

ABOUT HELPING

WHAT RESOURCES EXIST FOR YOUNG PEOPLE WITH CANCER AND THEIR FAMILIES?

Many organizations recognize the complexity of the problems that families encounter and strive to supplement the services offered by the medical facilities. Although the resources listed here are not the only ones available, they represent the major national programs that exist specifically for cancer patients and their families. A list of all organizations that offer help, such as those which provide prostheses, is beyond the scope of this book. However, further resources for families are listed in Appendix 4.

Camps
Because of their compromised immune status or physical limitations, many children with cancer are unable to attend regular summer camps. Over the past decade, the number of camps exclusively for young people with cancer and their families has risen. These camps provide a safe environment in which children can enjoy activities and share emotionally with other children with cancer. Some camps limit the program to children with cancer. This gives parents time to spend with their other children, as well as a needed respite from the daily care requirements of their ill child. Other camps are designed for the entire family to interact with other families and share experiences.

Canadian Cancer Society
The Canadian Cancer Society is a national, community-based volunteer organization whose mission is the eradication of cancer and the enhancement of the quality of life of those living with cancer. This mission is achieved through research, education, patient services, fund-raising and influence on public policy. As well as providing information about childhood cancer and children's camps, the Canadian Cancer Society offers practical assistance and emotional support to children and their families. Services vary by province, as each of the ten divisions is committed to delivering services not covered by the provincial health plan.

Candlelighters Childhood Cancer Foundation Canada
Candlelighters Canada is a national volunteer organization and part of an international network serving families of children and teenagers with cancer. It provides information, engages in advocacy, and encourages and assists in the development of local parent support groups. Its Board of Directors includes parent representatives from each of the provinces, so that views of parents from all regions are known. Contact, a quarterly newsletter published by Candlelighters, features articles relevant to families and professionals and provides essential, current information. A resource centre opened in the fall of 1995. Resource manuals on support groups and school re-entry and an annotated bibliography are available through Candlelighters Canada. The organization also hosts conferences and workshops for parents, professionals and volunteers. Candlelighters Canada has close liaison with the staffs of pediatric oncology treatment centres, the Canadian Society of Paediatric Haematology/Oncology, Ronald McDonald Houses, the Canadian Cancer Society, and other related organizations.

Hospices
Canuck Place in Vancouver is North America's first free-standing hospice for children. Canuck Place provides respite care, pain and symptom management and grief support. Some hospice facilities in Canada which care for adults also accept children.

Leucan
Leucan (www.leucan.qc.ca/en): A family history since 1978. In addition to its support for clinical research, the Association provides specific and adapted services to more than 3,200 families of children with cancer: welcome, emotional assistance and support, financial assistance, massage therapy, hosting and support in playrooms, socio-recreational activities, school life services and end-of-life and bereavement follow-up services. Besides its head office in Montreal, Leucan has eight regional offices and more than 8,400 members throughout Quebec.

Ronald McDonald Houses
Ronald McDonald Houses are temporary residential facilities for the families of children and teenagers being treated for a serious illness. These houses offer reasonable rates for accommodation and usually are located near pediatric cancer centres. They provide emotional support and a "home away from home" environment. Many Canadian cities currently have Ronald McDonald Houses. Appendix 4 contains information about their locations.

School Re-entry Programs
Children and teenagers with cancer may experience prolonged or frequent absences from school. Many treatment centres realize the importance of achieving successful school re-entry and have close relationships with the school districts in their region. Information about the medical aspects of cancer and its treatment, as well as the emotional impact upon the student with cancer, is shared with schools. These programs take the form of printed materials and/or a visit to the classroom by a treatment centre staff member. Parents play an important role in ensuring that their child receives the individual attention he or she may need. The Candlelighters Childhood Cancer Foundation Canada has prepared a school re-entry resource manual that is listed in Appendix 5.

Wish Programs
Wish programs grant wishes to seriously ill or dying children. These programs may be organized and funded locally or may be part of a national network. The wish may be a fantasy trip, the purchase of a special item, a visit with a celebrity or distant relative, or another personal request. Each of these groups strives to provide an opportunity for children with cancer to do or have something that, at least temporarily, relieves the sadness and creates a precious memory for their families.

HOW CAN I HELP?

Initially, some families are tempted to hide the diagnosis of cancer because the telling is too painful; they want to shut themselves off from the world. Others need to talk about it and reach out for comfort and support. There are many professionals specially trained to help families cope with the distress of having a child with cancer. Nevertheless, friends, family members, employers, co-workers, and others not familiar with cancer in children and teenagers may find themselves close to someone struggling with its impact. The most difficult task for those who hear the news is knowing how to respond. All are saddened, but beyond the sadness lies a wide range of reactions. Many people are uncomfortable in the presence of the person affected by cancer. A common response is to withdraw, leaving the suffering person feeling isolated. This section of the book is intended for any person who wants to help but does not know where to begin. If you are such a person, you may find the following suggestions helpful.

Be a friend, not an expert.Try to listen without assuming how family members affected by cancer feel and without attempting to impose your feelings and reactions on them. Allow them to express all feelings as they wish, recognizing that perspective and reactions may shift as the crisis settles. Trauma and stress can make people react unpredictably and out of character.

Above all, do not let false optimism or your own fear and discomfort dismiss how the family feels. You may have to talk to someone else about your own feelings, but avoid expecting the child's family to help you with this.

Do not bring every media or magazine article about cancer to the attention of the family. Treatment is difficult to cope with as it is.

Respect the need for privacy. Realize that family members will be selective in their choice of people in whom they wish to confide. Do not pry, or judge.

Offer practical assistance. Perhaps you can care for other children in the family or help with transportation to school or activities. Meal preparation, yard or housework or shopping when the family has no time for them are very much needed and appreciated. Offer to help with responsibilities which may be particularly time-consuming, stressful or exhausting, such as keeping friends and relatives informed or responding to phone calls on the family's behalf. With the agreement of the family, a close family member or friend can sometimes assume a co-ordinator role and allocate tasks.

Offer to be with a child who is hospitalized when parents must attend to daily affairs and other demands. Parents may need the respite but be reluctant to leave their child alone in hospital.

Cards and notes to the child who is ill as well as to other family members, especially siblings, are appreciated and meaningful. Sometimes it is easier to put thoughts on paper than to talk.

Although hospitalized children need and benefit from extra care and attention, they also need the hopeful expectation that they will recover. They are anxious to return to their home, school, activities and friends. It is important to acknowledge that they are going through a very difficult time, without being overprotective or pitying.

Do not feel that you have to do everything. Offer those gifts of help that you know you can. Be constant and dependable. It is a tremendous comfort to a family to know that a certain person can be counted on to meet a particular need.

Realize that cancer in a child or teenager affects the whole family. If you are the employer of a person whose child has cancer, try to allow flexibility in the work situation - flexible hours or time off when needed. Try to reduce job-related stress. If you are a teacher of a child whose brother or sister has cancer, be sensitive to the stresses this child is experiencing. Be willing to spend extra time with him or her or meet with the child's parents to find out how you can make things easier.

If you are not sure how to help - ask. And be sensitive to the answer. Do not be offended if your offer is not accepted at the present time; let the family know that you want to help and that you will call them later.

Finally, remember that the need for support is ongoing. The cancer is not "over" when the child leaves the hospital. The experience is just beginning. Cancer therapy often continues beyond two years. Even though it may look as though the family is returning to normal, the anxiety and stress may be hidden. Many parents feel that they are expected to get on with life too soon.

The opportunity to care for, comfort and support families affected by cancer can be very meaningful. Many people who become close to children and teenagers with cancer are personally challenged to explore their own philosophies and belief systems and may find new richness in their lives.

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