Cancer Center

Cancer Information and Support

Information sheets

• 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.

Websites

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 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 website 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 must grant eligible employees up to a total of 12 work weeks 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 as links to ASCO resources for patients.
• Sara's Smiles Foundation provides a variety of resources to entertain, comfort and educate children with cancer. The Foundation, a designated 501(c)(3) organization, was created by Sara's family to carry on her memory, spirit, and legacy of hope, determination, and cheer.

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

• 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.
• 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. 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.
• American Psychosocial Oncology Society (APOS) Helpline is a referral program that connects cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress.
• Band-Aids and Blackboards is maintained by one of the CUNY nursing faculty.
• 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.
• First Descents provides whitewater kayaking and other outdoor adventure experiences to promote emotional, psychological and physical healing for young adults with cancer. 
• 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.
  
  • Bucks/Montgomery County — 200 Kirk Road, Warminster, PA 215-441-3290, http://www.gildasclubdelval.org
  • South Jersey — 300 Shore Road, Linwood, NJ 08221 609-926-2699, http://www.gildasclubsouthjersey.org
• The Never-Ending Squirrel Tale is the place to go for practical tips and encouragement for the parents of kids with cancer. It's written by other moms and dads who have children with cancer.
• 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.
• 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.
• Special Needs Moms for Moms is a social network to connect parents of special needs children to share local, regional and national information; find and offer support; and be inspired through invaluable learning opportunities. Through collective effort, parent advocates can offer stories, share experiences and pave the way for others who are raising children with special needs.
• Special Spaces is a non-profit organization that creates dream bedrooms for children with life threatening illnesses. Volunteers from Special Spaces interview the child and family and in one day of work, create a dream room at no cost to the family. There is now a Philadelphia affiliate of Special Spaces, led by designers, contractors, muralists and many community volunteers. 
• Starlight Children's Foundation provides entertainment, education and family 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.
• 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.

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 Brain and Spinal Cord Tumors This book covers neurologic tumors in children.
• 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

• Imagine What's Possible Former CHOP patient Jarrod Skole and his father, Gary Skole, co-authored this book to teach children and teens how they can use visualization techniques to cope with cancer diagnosis and treatment. Jarrod used visualization, or imagery, to lessen anxiety, pain and discomfort. Read about Jarrod's experience with childhood cancer in the Philadelphia Inquirer.
• 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.)