Resources and information for parents of children with cancer . . . by parents of children with cancer.

Survivor Issues

Thankfully, the majority of children diagnosed with cancer will survive. However, survivorship can come with a price in the form of long-term medical, psychosocial, and/or neurocognitive problems due to chemotherapy, radiation, or surgery.

Important NEJM survivorship articles:

The New England Journal of Medicine graciously gave permission to the Ped-Onc Resource Center to link to full text versions of two important October 2006 articles. Click on each title to go to the specific article.

Chronic Health Conditions in Adult Survivors of Childhood Cancer. Kevin C. Oeffinger, M.D., Ann C. Mertens, Ph.D., Charles A. Sklar, M.D., Toana Kawashima, M.S., Melissa M. Hudson, M.D., Anna T. Meadows, M.D., Debra L. Friedman, M.D., Neyssa Marina, M.D., Wendy Hobbie, C.P.N.P., Nina S. Kadan-Lottick, M.D., Cindy L. Schwartz, M.D., Wendy Leisenring, Sc.D., Leslie L. Robison, Ph.D., for the Childhood Cancer Survivor Study, NEJM Volume 355:1572-1582, October 12, 2006, Number 15.

The Two-Edged Sword of Curing Childhood Cancer. Philip Rosoff, NEJM. Volume 355:1522-1523, October 12, 2006, Number 15.

Best resources

Web sites and printed materials for survivors' and for their parents.

Online Articles

We have gathered quite a few articles that are published online on general survivors' late effects issues (specific late effects are listed below):

Follow-up Programs for Survivors of Childhood Cancer

Children who have been treated for cancer should be seen by specialists in late effects of childhood cancer. A good article on this topic is on the Candlelighters web site: Comprehensive Follow-Up Programs: A Necessity not a Luxury. We keep a list of late effects clinics (thanks to Nancy Keene) on this site:

Cognitive Late Effects of Treatment, and Education

A section that contains both original material and links to articles on cognitive late effects of treatment for childhood cancer:

Specific Late Effects

The links below take you to original material on this ped-onc site (or good articles elsewhere) that cover selected specific late effects.

I recommend that you go to the COG survivorship guidelines for information on the topics below (and others). Each is a pdf document about 4 pages long.

Selected Health Links offered on survivorshipguidelines.org:

On the Candlelighters site:

College Scholarships

One of the most extensive listing of scholarships for survivors of childhood cancer:

Online Support Groups

Ped-Onc Survivors The PED-ONC SURVIVORS listserv discusses all aspects of survivorship. This discussion group provides an opportunity for parents and family members of childhood/adolescent cancer survivors to share ideas, information and support. Parents, siblings and survivors of childhood/adolescent cancer face unique challenges. The effects and consequences of a life threatening illness on family, siblings and marriage are many. Some parents may find that these concerns do not abate post-treatment. Parents and survivors may face social challenges (school, insurance and eventually employment), some will have emotional challenges (depression and anxiety post treatment), and some parents will be concerned about late effects and ongoing health problems related to treatment. This discussion group addresses the unique needs of parents, the family and survivors.

4YOUth. This list is for preteens, teens, and young adults who had cancer. Posts to the list are private and confidential i.e., they will not be publicly available outside the list as it is essential that the kids feel safe in posting. In order to subscribe, go to the 4YOUth link and click on "Join the list". If you have any questions, please contact the administrators at 4YOUth-request@acor.org.

Long-Term Survivors Long-Term Survivors Long-term survivors of cancer face unique problems. Most will face social challenges (insurance and employment), some will have emotional challenges, and some will have ongoing health problems related to treatment. This discussion group addresses the unique needs of this group.

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

contact webmaster/ped-onc home/last updated 5/09