“Support” means renewal and strength. Life-threatening illness in the family demands immediate and full attention. Don’t be afraid to ask for help. Try to seek the type of help you need in the style that best suits you and your family. Different combinations of support, formal and informal, may be needed at different times.
Social workers and hospital staff can connect you with local resources.
Do research on your own as well – hospitals, brain tumor or children’s cancer organizations may have support services. Information can be found on the internet, from friends, newspapers, and references from national organizations.
If you are a parent/guardian the idea of enlisting support is to help you, first. You, in turn, will be the person that your child turns to for support. Your child needs the strength of your hugs, reassuring words, and love.
Enlisting Help At Home
The rhythm of everyday needs and tasks is disrupted when there is a major illness in a family. Family life continues, especially if there are siblings to care for, but priorities are now different.
Family members or close friends may offer help. Accept these offers as gifts, helping you to keep your home running smoothly during this crisis.
If, at first, too many people call, offering assistance, appoint one close friend or family member to coordinate cooking meals, caring for children, arranging transportation, taking phone calls or letting others know the latest news.
When people call, it may help to have a standard response, “I’m feeling overwhelmed right now. I appreciate your concern.”
Consider leaving you answering machine on all the time.
Offers of assistance benefit not only you, the recipient, but can also help those making the offers, alleviating some their feelings of helplessness.
Support Groups and Services
Support groups can provide a safe place to share anger, fear, sadness, frustration and fatigue with others, to be yourself, and to learn that your emotional ups and downs are not easy to deal with on your own.
Health professionals can guide you and provide coping strategies, but only another family or parent has experienced first hand what you have.
You can get advice on family issues and learn more about available medical care and treatments.
You can begin to understand differences between families that have a child with a life-threatening illness and those who don’t.
Even if you don’t feel comfortable speaking in front of a support group, you can listen and feel connected.
Sibling support groups may be harder to locate. Siblings may resent the amount of attention given to their sick brother or sister, feel guilty, or angry. Even when they seem to be “handling it well,” siblings can benefit from a group where they will meet children facing similar problems and find out that their feelings are normal under the circumstances.
Local support groups for kids can be found by calling your local hospital, cancer center, or local Candlelighters Childhood Cancer Foundation.
Groups connected to professional organizations will usually have a professional leader to facilitate the group. Sometimes groups for parents and children meet at the same location.
You can also ask your doctor or treatment center to connect you with families in a similar situation.
The Children’s Brain Tumor Foundation offers a parent-to-parent network.
Health Information on the Internet
There is an ever-growing amount of medical information on the internet. You can use this and other web sites to learn more about pediatric brain and spinal cord tumors and communicate with other families and medical professionals. “Surfing the web” can be time-consuming. Ask a friend or relative to assist you and share the information you find with your child’s doctor.
A sampling of resources:
Brain Surgery Information Center
Brain Tumor Center – Massachusetts General Hospital
National Library of Medicine
National Cancer Institute
Oncolink: A University of Pennsylvania Cancer Center Resource
Camps
Children with brain tumors may be frustrated by the barriers that disease and treatment create to living the way they did before. Summer camp can offer what their peers enjoy and escape the trauma of a brain tumor. There are many camps for children with special needs, which are often inexpensive or free. Your child’s doctor can help determine if one of these camps is appropriate.
Contact:
Children’s Oncology Camps of America
c/o Children’s Center for Cancer and Blood Disorders
7 Richland Medical Park, Suite 203
Columbia, South Carolina 29203
(803) 434-3503
Wish Fulfillment Agencies
These agencies help to “grant” the special wishes of a child with a life threatening illness.
Make-A-Wish-Foundation
National Office
100 West Clarendon
Suite 2200
Phoenix, Arizona 85013-3518
(609) 279-9474
(800) 722-WISH
Website: www.wish.org
Starlight Foundation
5900 Wilshire Boulevard
Suite 2530
Los Angeles, California 90036
(323) 634-0080
FAX (323) 634-0090
Website: www.starlight.org
New York Chapter
1560 Broadway
Suite 402
New York, New York 10036
Sunshine Foundation
2001 Bridge Street
Philadelphia, Pennsylvania 19124
(800) 767-1976
(215) 535-1413
Hospice and Palliative Care
Managing a life threatening illness means continuing to assess all treatment options balanced against a child’s quality of life. There may come a time when everything medically possible has been done. You may decide to focus on comfort rather than cure. Hospice care is a philosophy, supporting the physical, psychological, social and spiritual needs of the child. The focus is on making the best of living, knowing that the child may die soon. It may mean avoiding painful procedures and treatments.
Hospice care can be provided in the hospital or home, by a team of specialists, who work with the child and family. Doctor’s or social workers can arrange the referral and insurance coverage.
Hospice Organizations
Children’s Hospice International
700 Princess Street
Lower Level
Alexandria, Virginia 22314
www.chionline.org
(703) 684-0330
(800) 2-4-CHILD
Website: www.chionline.org
National Hospice Organization
1901 North Moore Street
Suite 901
Arlington, Virginia
(703) 243-5900
Website: www.nho.org
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