This section lists websites that are not listed in Appendix B, Resources, but that many parents find helpful. As with any resource, check with your child’s treatment team about the accuracy of any information found on websites.
Dictionary
National Cancer Institute Dictionary of Cancer Terms
Education
Wrightslaw
Accurate, up-to-date information about special educational law for parents, advocates, and attorneys.
General online medical resources
Clinical Trials and Noteworthy Treatments for Brain Tumors
Musella Foundation for Brain Tumor Research and Information
Descriptions of and discussions about clinical trials and noteworthy treatments for brain tumors. Website features a brain tumor guide, survivor stories, a video library, links, and support group information.
Medline Plus
www.nlm.nih.gov/medlineplus/druginformation.html
A service of the National Institutes of Health, this site provides accurate information about drugs, including precautions and side effects.
National Cancer Institute
A huge, reliable site that provides accurate information about cancer, treatments, and clinical trials.
Pediatric Oncology Resource Center
Excellent source of information about pediatric cancers created and managed by a mother of a long-term survivor. Contains detailed and accurate material about diseases, treatment, family issues, activism, bereavement, and survivorship. Also provides links to other helpful cancer sites.
PubMed
The National Library of Medicine’s free search service provides access to more than 23 million citations in MEDLINE and PREMEDLINE (with links to participating online journals) and other related databases.
Quackwatch
International network of people who post information about health-related frauds, myths, fads, fallacies, and misconduct.
Rx List—The Internet Drug Index
Accurate information about prescription medications. Also contains a medical dictionary.
Squirreltales
An uplifting and practical website that encourages and empowers parents of children with cancer when they are feeling discouraged and powerless.
Online support groups
Be sure to check the accuracy of any information obtained from an online support group with members of your child’s treatment team.
ACOR, The Association of Cancer Online Resources, Inc.
ACOR is a unique collection of 142 online cancer communities and is designed to provide timely and accurate information in a supportive environment. It hosts several pediatric cancer discussion groups, including PED-ONC (a general pediatric cancer discussion group), Medulloblastoma and PNET, and PED-ONC-SURVIVORS (for parents of survivors).
The Healing Exchange Brain Trust
Host to a number of online support groups, including the large Braintmr list, craniopharyngioma list, and ependymoma parents’ list.
Jenna’s Corner
www.jennasrainbow.org/jennas_corner.html
Online community sponsored by Jenna’s Rainbow and the Children’s Brain Tumor Foundation to help family members of children with brain or spinal cord tumors gain practical information, support, and guidance from professionals and each other.
Yahoo Groups
Brainstem Tumors
www.yahoogroups.com/group/brainstem
Cerebellar Mutism
www.yahoogroups.com/group/cerebellarmutism
DIPG (diffuse intrinsic pontine glioma)
www.yahoogroups.com/group/DIPG
www.yahoogroups.com/group/germcell
Low Grade Glioma Kids
www.yahoogroups.com/group/LGGliomaKids
Optic Glioma
www.yahoogroups.com/group/optic-glioma
Pediatric Brain Tumors
www.yahoogroups.com/group/pediatricbraintumors
JPA and Adult Pilocytic Astrocytoma
www.yahoogroups.com/group/pilocyticastrocytoma
Astrocytoma Brain or Spinal Tumor
http://health.groups.yahoo.com/group/pilomyxoid
Tectal Glioma
www.yahoogroups.com/group/tectalglioma
Stem cell transplantation
BMT InfoNet
Provides accurate and medically reviewed publications and website content for patients and family members.
Survivorship resources online
Ped-Onc Resource Center Survivor Issues
Collection of information for families of survivors, including resources, technical and nontechnical articles, accurate information about late effects, sources of scholarships for survivors, list of survivorship clinics, and much more.
Children’s Oncology Group Long-term Follow-up Guidelines
www.survivorshipguidelines.org
Downloadable document that details current knowledge about the late effects of childhood cancer. The late effects are listed by treatment (chemotherapy drug or radiation dose/site) and guidelines for diagnostic tests are provided. Includes individual “Health Links” with information about dozens of specific late effects.
About the Authors
Tania Shiminski-Maher received her BSN and MS in pediatric primary care from Columbia University and holds an academic appointment to the faculty of Columbia University School of Nursing. She is certified as a pediatric nurse practitioner and has held past certification as clinical neuroscience registered nurse and pediatric oncology nurse. For the past 30 years, she has worked as a pediatric nurse practitioner in pediatric neurosurgery and pediatric neuro-oncology and has published extensively in the areas of pediatric brain tumors, hydrocephalus, and multidisciplinary team communication. She has been a member of the Children’s Cancer Group (CCG) and Children’s Oncology Group (COG)—consortiums of researchers from more than 300 institutions that treat children with cancer—for the past 25 years.
Catherine Woodman received her BA in biology and her MD from Brown University, and she completed her residency at the University of California, San Francisco. She has been on the faculty at the University of Iowa in the departments of psychiatry and family medicine for more than 20 years. She has served as a member of COG for 10 years and is on its Patient Advocacy Committee, Ethics Steering Committee, and Central Nervous System Tumors Steering Committee. In addition, Dr. Woodman is currently a member of the Phase I/Phase II Data Safety Monitoring Committee, and she served on the National Cancer Institute’s Pediatric Central Institutional Review Board for 6 years. She has published numerous papers related to ethics of pediatric research and late effects of treatment for childhood cancer. Her 19-year-old son is a survivor of medulloblastoma.
Nancy Keene, a well-known writer and advocate for children with cancer, is the parent of a 22-year survivor of high-risk acute lymphoblastic leukemia. She is one of the founders of the nonprofit Childhood Cancer Guides, and she has written many books for families of children with cancer, including Childhood Leukemia; Your Child in the Hospital; and Chemo, Craziness, and Comfort. She co-authored Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers and Childhood Cancer Survivors: A Practical Guide to Your Future and edited Educating the Child with Cancer. She served as chair of the Patient Advocacy Committees of both CCG and COG. Ms. Keene has been interviewed on National Public Radio about childhood cancer survivorship, frequently speaks to professional and parent groups, and has participated in online pediatric cancer support groups (www.acor.org) since they began in 1996.
Childhood Cancer GuidesTM
Questions Answered
Experiences Shared
When your life is turned upside down, your need for information is great. You have to make critical medical decisions, often with what seems like little to go on. Plus, you have to break the news to family, quiet your own fears, help your ill child and your other children, figure out how you are going to pay the bills, and sometimes get to work or put dinner on the table.
Childhood Cancer Guides provide authoritative information for the families and friends of children with cancer or survivors of childhood cancer. Our books cover all aspects of how these illnesses affect family life. In each book, there’s a mix of:
- Medical information
Dozens of experts on childhood cancer and survivorship contributed to these books to provide state-of-the-art information to help you weigh treatment options. Modern medicine has much to offer. When there are treatment controversies, we present differing points of view.
- Practical information
After making treatment decisions, life focuses on coping with treatment and any late effects that develop. We cover day-to-day practicalities, such as those you’d hear from a helpful nurse or a knowledgeable support group.
- Emotional support
It’s normal to have strong reactions to a condition that threatens your child’s life. It’s normal that the whole family is affected. We cover issues such as the shock of diagnosis, living with uncertainty, and communicating with loved ones.
Each book contains stories from parents, children, and siblings who share, in their own words, the lessons they have learned and what truly helped them cope.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites