An Internet Guide on Childhood Cancer for Parents

 

 

There is a great deal of information on the Internet related to Childhood Cancer. 

Much of it is good, but parents must be aware that there is also some very dangerous stuff out there. 

We are grateful to the Childhood Cancer Foundation - Candlelighters Canada for compiling this list of resources, and making the comments on the various sites. 

PLEASE: be very, very sceptical of any site that you find that claims that conventional medical treatment is inappropriate, or that they have a new "miracle" cure for cancer.  Apart from the potential damage to your financial state, if you pursue these sort of "cures", you may be putting your child's life in peril.

If you find something that seems credible to you, you MUST discuss it with your doctors before taking any action.

Resource Sites:

Organisation Comments Link
Children's Cancer Web

A Guide to Internet Resources for Childhood Cancer

- Contains hundreds of links to childhood cancer websites.

- Good information, but need lots of patience to sift through information!

Go
Paediatric Oncology Resource Center

One stop centre for parents of children with cancer...by parents of children with cancer.

- Very easy to navigate and most information is easy reading

- Well organized

Go
Families of Children with Cancer

Run by volunteers who are parents of children with cancer.

- Not much information within the site itself; however provides links to key sites related to childhood cancer

Go
American Cancer Society (click on "Children & Cancer") This site is much more informative (with respect to Childhood Cancer) than the Canadian Cancer Society website. www.cancer.ca. Go
University of Pennsylvania Cancer Centre

Paediatric Oncology Menu

- Lots of information, but found it more difficult to navigate and some information very technical

Go
Part of U.S. National Cancer Institute website

Includes online books for children and parents to read. Also lists of related books (Titles and authors)

Go
United Kingdom Childrens Cancer Study Group/ CancerBACUP, UK

A Parent's guide to children's cancer

- Very easy to navigate and information is easy reading

Go

Note: Information specific to the various types of childhood cancers can be obtained using the above sites.
[This list is a suggested example of sites only and not meant to be an exhaustive search on good sites, nor does it endorse any of these sites. Caution and discretion is advised when using the internet for research purposes]

Support Groups:

Note: most of the "Resource Sites" a/so have additional information/links relating to support groups. As well, some of the support groups (Candlelighters in particular) include general resource info also. 

See the Country Pages on this ICCCPO site for details of web sites for parent groups in other countries.  

 

Description Site Link
Children's Hospice International provides a network of support for dying children and their families. Go 
Candlelighters Childhood Cancer Foundation is an international non-profit organization dedicated to educating, supporting, serving, and advocating for families of children of cancer, survivors of childhood cancer, and the health professionals who care for them.  Go 
The Childhood Cancer Foundation - Candlelighters Canada Go 
Dutch Candlelighters Organization Go 
Children's Oncology Camping Association, International.  Provides links to various Camp websites (currently Canada & U.S.) Go 
Australia - Provides support for teenagers and young adults (ages 12 to 24) living with cancer and their teenage brothers and sisters. Go 
Ireland - A support group for young people with cancer, their brothers, sisters and friends -ages 12to20. Go 
Ireland - Cancer Plus - Parent's support group for parents who have a child who has been diagnosed and treated for cancer. Go 
Outlook: Life Beyond Childhood Cancer-interactive information and support system for long-term survivors of childhood cancer and their families. Go 


Chat Rooms:

Speak live to others in a "chatroom" environment.

 

Description Site Link
Online Peer Support for Cancer Survivors, Family & Friends Go 
#Cancer-survivors - chatroom for Cancer patients, Survivors, Family & Friends Go 
Cancer and Leukaemia in Childhood Trust (United Kingdom). - includes on-line chat, one for teenagers, and separate one for children under 11. Go 


 

E-Mail Discussion Groups:

 

Provides a central correspondence point for those with a common interest. Subscribers send their e-mail to a central address, which in turn re-mails it to all subscribers.

 

www.oncolink.upenn.edu/forms/listserv.html  

Use "OncoLink" to subscribe to a particular mailing list - it contains an alphabetical list of various groups which relate to various aspects of cancer. For example:

         "4Youth" is an e-mail based support group for children/teens who are cancer survivors.

         "PED-ONC" is an online support group for parents, siblings, friends, researchers & physicians, to discuss clinical and non-clinical issues and advances pertaining to paediatric cancers.

There are also lists available that are specific to certain types of cancers.