Resources

[This page is still under construction! Thanks for your patience!]

Online support

Association of Online Cancer Resources (www.acor.org): Aside from finding support from pediatric cancer-specific groups on Facebook, be sure to go to the Association of Online Cancer Resources and search for your pediatric cancer. You can join the email discussion list and find many families who have walked in your shoes.

CaringBridge (www.caringbridge.org): A great place to keep your friends and family up to date about your child’s treatment and survivorship. It can be public, or you can make it private. Later, CaringBridge can make your journal, including guestbook entries and photos, into a book.

MyLifeline.org (www.mylifeline.org): Free patient website, where you can post updates and requests for help, coordinate meals/rides with an online scheduler, and find cancer specific resources.

GroupLoop (www.grouploop.org): An online resource for teens to connect with other teens who have had cancer.

Lotsa Helping Hands (http://lotsahelpinghands.com): Organize meals and help online.

Stupid Cancer (www.stupidcancer.org): For young adults affected by cancer (age 15-39), Stupid Cancer is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

Oncology camps

Attending an oncology camp can be a magical experience for kids!!  Not to be missed! (Camps may be available for siblings and parents as well.)  Meeting others going through a similar experience can make a world of difference!  If you are not referred by your hospital to an oncology camp, here are few lists to consult.

List of Pediatric Oncology Camps by State – http://www.ped-onc.org/cfissues/camps.html

http://www.cocai.org/index.php/about-cocai

http://www.cancer.net/navigating-cancer-care/children/camps-and-retreats-families-and-children-affected-cancer

Adventures for older teens and survivors affected by cancer

First Descents (www.firstdescents.org): Provides life-changing outdoor adventures for young adults (age 18-39) impacted by cancer.

Financial Resources

Sarcoma Alliance (www.sarcomaalliance.org) can help with funds for second opinions. In addition, they have a page which lists many other financial resources.

Triage Cancer (www.triagecancer.org): Although not specific to childhood cancer, Triage Cancer is a national, nonprofit organization that provides education and resources on the entire continuum of cancer survivorship issues to survivors, caregivers, and healthcare professionals. Under the Resources tab, check “State Resources” and “Financial” for links that may be useful.

 

More topics coming:  Survivorship, education issues and more!