After the Diagnosis: Helping My Family Cope is an information sheet for families from The Children's Hospital of Philadelphia that offers advice for coping with the stress of a cancer diagnosis.
Web sites
Information and resources
American Cancer Society Pediatrics Information Page offers a collection of resources about childhood cancers, as well as information about how children are impacted by cancer in a parent or adult relative.
American Society of Clinical Oncology Web site provides oncologist-approved information on more than 120 types of cancer and cancer-related syndromes.
Children's Cancer Web in the United Kingdom offers a collection of links to other online resources about childhood cancer, and is maintained as a personal-interest project by a researcher.
CureSearch, the Web site of the Children's Oncology Group, contains a wealth of information on diagnosis and treatment of childhood cancer, as well as individual and family lifestyle adjustments during and after treatment. There is also a section for health professionals.
Family Medical Leave Act states that by law, covered employers employers must grant eligible employees up to a total of 12 workweeks of unpaid leave during any 12-month period in order to care for their seriously ill child.
NCI Pediatrics is the National Cancer Institute's central page for childhood cancers; it includes links to information about treatment, clinical trials, testing and research.
NCI Family Handbook is the Parent's Handbook written by NCI staff. It contains a large amount of valuable, practical advice for families of children with cancer. The handbook is available online and as a PDF for printing. It includes links to other NCI patient brochures on cancer-related topics.
OncoLink is maintained by the Abramson Cancer Center at the University of Pennsylvania. It contains a wide variety of information on adult and pediatric cancers. It also has information on coping with cancer, and a gallery of artwork by both adult and pediatric patients and families.
People Living With Cancer Childhood Cancer section is maintained by the American Society of Clinical Oncology (ASCO). It provides a brief overview of diagnosis and treatment, as well a links to ASCO resources for patients.
Keeping in touch
CaringBridge allows you to create a free Web page that acts as a virtual diary of your child's experience. You can update it at any time, and your family and friends can access it from any browser. It's very user-friendly.
CarePages at CHOP is a simple-to-use service that helps families stay in touch during their child's hospitalization and recovery. With CarePages, you can share news and updates about your child, receive messages of support from friends and family on your own message board, post visiting hours and contact information, and share photos with friends and family.
Caringbridge is another place where families can create Web sites to share information with friends and family about their progress through treatment and recovery, and to receive messages from visitors.
Lotsa Helping Hands lets you create a free, private, Web-based community to organize family, friends, neighbors and colleagues – a family’s ‘circles of community’ — during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar. Communicate and share information using announcements, messages boards and photos.
Support and advocacy
ACOR, The Association of Cancer Online Resources, Inc. offers information and online support groups to patients, caregivers or anyone looking for answers and support related to cancer. ACOR hosts several pediatric discussion groups and the Web site provides disease descriptions, treatments and links to pertinent information.
American Cancer Society (ACS) sponsors support groups for patients, parents and siblings, and may also be able to help with non-medical expenses (see financial assistance page). Their Look Good, Feel Better Program teaches cancer patients hands-on cosmetic techniques to help them cope with appearance-related side effects from chemotherapy and radiation treatment.
CancerCare is a non-profit organization that provides free support services, coordinated by social workers, to patients and families. These include online and telephone contact and referrals to local resources.
Chai Lifeline offers programs that address the emotional, social and financial needs of seriously ill children and their families. Their goal is to restore normalcy to family life and to better enable families to withstand the crises and challenges of serious pediatric illness.
Chemo Angels connects patients in treatment with volunteers who provide encouragement throughout treatment with messages, cards, etc.
Childlink is a Philadelphia service agency that helps children from birth to age 3 who have special needs or who may have developmental delays. Childlink can help families receive a wide range of early intervention services in Philadelphia. For more information call (215) 731-2110 or visit their Web site and click on "programs."
Education Law Center provides free legal assistance to parents, students and advocates on education law matters, and advises parents of their rights to special services under the law. The center publishes a free guide for parents, "The Right to Special Education in Pennsylvania." For more information call 215-238-6970 or visit them online.
Fertile Hope is a national, non-profit organization that provides reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.
Gilda's Clubs provide a meeting place for families to learn how to live with cancer. Services include groups, activities and workshops for all age groups. All services are free.
GroupLoop is a teen-oriented site containing information about lifestyle issues and hosting online support groups. It is run by The Wellness Community, a non-profit support organization for people with cancer.
I'm too young for this!" Cancer Foundation Web site was created by, and for, young adult cancer survivors. It offers a global support community, as well as many resources and materials.
Imerman Angels is a federal not-for-profit organization that partners someone who is fighting cancer with someone who has beaten the same kind of cancer. One-on-one relationships give a fighter the chance to ask personal questions and get support from someone who is uniquely familiar with their experience.
SibShops, part of the Sibling Support Project, are interactive workshops for siblings of kids with special needs. They focus on peer support and celebrate the many contributions made by brothers and sisters of kids with special needs. Ask your social worker for more information.
Squirrel Tales The Never-Ending Squirrel Tale is an often lighthearted Web site by parents of children with cancer that is intended to be (in their own words) "an uplifting and practical Web site to encourage and empower parents of kids with cancer coordinates services in Philadelphia and helps children from birth to age 3 who have special needs or who may have developmental delays. Childlink can help families receive a wide range of early intervention services in Philadelphia. For more information call (215) 731-2110 or visit their website and click on ‘programs’.when they feel the most discouraged and powerless."
SuperSibs is an organization that recognizes and supports siblings of children with cancer. Their Web site lists their services and explains how parents can connect siblings with the program.
Teens Living With Cancer is a Web site of Melissa's Living Legacy Foundation that provides information by and for teens with cancer. While it includes facts about specific diseases and treamtents, its focus is on lifesylte and peer issues affecting adolescents with cancer.
2bme is home to a collection of short articles for teens with cancer. Topics include handling non-medical issues like diet, body image and relationships.
Songs of Love creates personalized songs for children with serious illnesses. Request forms can be downloaded from their Web site.
Special Kids Network provides information to families in Pennsylvania regarding special health issues and community resources. It also links families facing similar experiences together. For more information call (800) 986-4550 or visit them online.
Starlight Children's Foundation provides entertainment, education and familiy activities to help children with chronic and life-threatening illnesses and life-altering injuries to cope with the pain, fear and isolation of prolonged illness
Books
For parents
Childhood Leukemia This book collects both medical and support information about leukemia in children, along with stories from patients and families. It is intended to be a primer and reference for parents of children with leukemia.
Childhood Cancer This book covers solid tumors in children, with a similar approach to that seen in Childhood Leukemia.
Childhood Cancer Survivors This book covers long-term issues for patients who have completed treatment for childhood cancers.
Baker, Lynn, MD. You and Leukemia: A Day at a Time, 2nd ed. Philadelphia: W.B. Saunders Company, 2002.
Hilden, Joanne, MD and Tobin, Daniel, MD. Shelter from the Storm: Caring for a Child with a Life-Threatening Condition. Perseus Publishing, 2002.
Hodder-Janes, Honna. Childhood Cancer: A Parents Guide to Solid Tumor Cancers. O’Reilly & Associates, 1999.
Keene, Nancy. Childhood Leukemia: A Guide for Families, Friends, and Caregivers. O’Reilly & Associates, 2002.
Keene, Nancy. Your Child in the Hospital: A Practical Guide for Parents, 3rd ed. Sebastopal, California: O’Reilly & Associates, 2002.
Shiminski-Mahar, Cullen, Sansalone. Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers. O’Reilly & Associates, 2002.
For children and teens
Dorfman, Elena. The C-Word: Teenagers and Their Families Living with Cancer. New Sage Press, 1998.
Foss, Karen. The Problem with Hair: A Story for Children Learning about Cancer. Centering Corporation, 1996.
Keene, Nancy and Romain, Trevor. Chemo, Craziness, and Comfort: My Book about Childhood Cancer. Candlelighters Childhood Cancer Foundation, 2002.
Krisher, Trudy. Kathy’s Hats: A Story of Hope. Concept Books, 1992.
Peterkin, Allan. What about Me? : When Brothers and Sisters Get Sick. Magination Press, 1992.
Sonnenblick, Jordan. Drums, Girls, and Dangerous Pie. Scholastic Books, 2004. (a fictional story about a sibling’s experience with childhood cancer.
