Childhood Cancer

This section lists websites that are not included in Appendix B, Resource Organizations, 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.

Calendars and practical help

CareCalendar

www.carecalendar.org

CareCalendar is a free service to organize meals and other help for families in need. The coordinator can upload photos and status updates to these password-protected sites.

CaringBridge

www.caringbridge.org

CaringBridge allows people who are ill or injured to create a website to share medical updates and personal photos with those who care about them. This website also provides users with the ability to post a simple task calendar to let supporters help with meals and chores.

Lotsa Helping Hands

www.lotsahelpinghands.com

An online task scheduling and information-sharing website for families that need support from friends and family. The site allows the site manager to sign up new members, schedule tasks, communicate needs, and post messages and photos to members of the community.

My Med Schedule App

http://mymedschedule.com

A software application to help you keep track of medication schedules, dosages, and any other important information, with reminder timers. You can record lab results and track them over time. The app is password protected and can be used from a computer, smartphone, or other device.

Dictionary

National Cancer Institute Dictionary of Cancer Terms

www.cancer.gov/dictionary

This dictionary provides definitions of cancer terminology.

Education

Wrightslaw

www.wrightslaw.com

This site provides accurate, up-to-date information about special education laws for parents, advocates, and attorneys.

Employment and family leave

National Conference of State Legislatures

www.ncsl.org/research/labor-and-employment/state-family-and-medical-leave-laws.aspx

This site lists state family medical leave and parental leave laws for all 50 states.

U.S. Department of Labor

www.dol.gov/agencies/whd/fmla

The Wage and Hour Division of the Department of Labor provides detailed information about employees’ rights under the Family and Medical Leave Act.

Fundraising

YouCaring

www.youcaring.com

YouCaring allows individuals to create a webpage to raise money for medical expenses or other pressing bills. The link to your page can be shared by email and on social media so friends, family, and community members can help to spread the word widely and donate to you directly. Several other personal fundraising sites are available, including www.gofundme.com and www.crowdrise.com. Fundraising sites charge varying fees for processing the money donated, so read the fine print very carefully.

General online medical resources

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

www.cancer.gov

A huge, reliable site that provides accurate information about cancer, treatments, and clinical trials.

Pediatric Oncology Resource Center

www.ped-onc.org

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. It also provides links to other helpful cancer sites.

PubMed

www.ncbi.nlm.nih.gov/PubMed

The National Library of Medicine’s free search service provides access to more than 25 million citations in MEDLINE and PREMEDLINE (with links to participating online journals) and other related databases.

Quackwatch

www.quackwatch.com

This is an international network of people who post information about health-related frauds, myths, fads, fallacies, and misconduct.

Rx List—The Internet Drug Index

www.rxlist.com/drugs/alpha_a.htm

This site provides accurate information about prescription medications and a medical dictionary.

Survivorship

Ped-Onc Resource Center Survivor Issues

www.ped-onc.org/survivors

This collection of information for families of survivors includes 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

This downloadable document 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 needed diagnostic tests are provided. It includes individual “Health Links” with information about dozens of specific late effects.