Childhood Cancer Resources

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Registered: 04-25-2003
Childhood Cancer Resources
Mon, 05-02-2005 - 11:38am

Well if by some miracle someone stumbles across this board here are some resources..

PARENTS SUPPORTING PARENTS
http://www.candlelighters.org/
We are affiliated with but not financially supported by the national Candlelighters Childhood Cancer Foundation. Their site has lots of good information and news items about childhood cancer. They also have a bulletin board where you can leave messages and connect with members around the world.

http://www.acor.org/ped-onc/
This site is a very complete information resource. It was put together by a mom whose teenage son is an ALL survivor. It has information about many different types of childhood cancer. It has a lot of practical information and tons of links. Under the stories and faces section there is a lists of links to websites that tell the stories of kids with many different types of childhood cancer. It's a large site and it takes time to go through it all.

http://www.squirreltales.com/
This site is a very complete information resource. It was put together by a mom whose teenage son is an ALL survivor. It has information about many different types of childhood cancer. It has a lot of practical information and tons of links. Under the stories and faces section there is a lists of links to websites that tell the stories of kids with many different types of childhood cancer. It's a large site and it takes time to go through it all.

Email Lists - An email list is a group of people who have a common interest and communicate with each other vial email. Instead of sending an email to everyone on the list you send your email to a list server and it is automatically sent to everyone on the list. There are several lists for parents of kids with cancer. Some of the email lists have rules and try to maintain some privacy but this is impossible to enforce. So when you send a message to an email list remember that anyone anywhere can read your message. Thi

s includes your child if they are old enough to read. Many lists also keep archives of all the past messages.
ACOR is a non profit organization that sponsors email lists. ACOR was originally founded to help cancer patients find support from other cancer patients. To join any list go to the site and click on 'Mailing Lists' in the upper left corner. Simply select the list you want to join and follow the directions. ACOR keeps archives of their lists that subscribers can search by key word. They have several lists for childhood cancer.
http://www.acor.org/

PED-ONC - This list is for all parents of children with any type of cancer. There are over 200 parents on this list. Many types of cancer are represented ALL, AML, CML, Brain Tumors, Wilms Tumors, Osteosarcoma, Ewings Sarcoma, Rhabdomyosarcoma and more. They are parents of children in treatment, parents of longer term survivors and parents who lost their children. Parents of kids who went through treatment easily, parents of kids who had a rough time with treatment. Parents of kids who have relapsed one or more times. Parents of kids of all ages, infants to adults. Most of the parents are from the US, but there are also some from Canada, Australia, Great Britain, India, New Zealand and others. There are also medical professionals who lurk on the list and occasionally post answers to questions. The collective information on this list always amazes me. Someone will post a question inquiring about a particular drug, treatment, clinic, hospital, doctor, side effect, etc. and someone (usually more than one) always has the information.

4Youth -This is a list for teens with cancer. There are kids on and off treatment on the list. The list is moderated by an adult survivor of childhood cancer but no parents are allowed.

PEDONC Survivors- The name of this list is a little confusing, it is for parents of survivors. There is another list for long term survivors themselves. This list has parents of kids who have completed treatment or are currently in maintenance. Many of these people are dealing with late effects. Some have just completed treatment and are learning to adjust to this new phase. Some are parents whose survivors are now adults. Some are parents of young children and they are just beginning to see late effects.

PEDHospice - This list is for parents who have children receiving hospice care.

PED-ALL, ALL-KIDS - These lists are very similar to PED-ONC but they only have parents of kids with leukemia. Many of the parents on these lists are also on the PED-ONC list.

ALL-KIDS-RELAPSED - This list is for parents of kids who have relapsed with ALL.

N-Blastoma -This list is for parents of kids with neuroblastoma. In addition to support from other parents this list has medical professionals who are a little more active than on the other lists. There is more discussion of the latest treatments.

Long Term Survivors - This is a list of adult survivors of childhood cancer.

Rhabdo-Kids - A list for parents of kids with rhabdomyosarcoma.

RB-Survivors - A list for survivors of retinoblastoma.

Osteosarcoma - A list for parents of kids with osteosarcoma.

Wilms-Kids - A list for parents of kids with Wilms tumor.

SEARCHING FOR INFORMATION

CureSeach http://www.curesearch.org

National Cancer institure http://cancernet.nci.nih.gov/cancertopics

OncoLink http://www.oncolink.upenn.edu/

PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

The Brain Tumor Society http://www.tbts.org/

Ewing's Sarcoma and Pediatric Cancer Support Group Resources http://www.diverstech.com/ewings.htm

Neuroblastoma Hope Foundation - http://www.acor.org/nbl/index.htm

National Wilms Tumor Study Group http://www.nwtsg.org/

For the Kids

Teens Living with Cancer http://www.teenslivingwithcancer.com/
Make a Child Smile http://www.makeachildsmile.org/
Kimo Bear http://www.kimobear.org/

Camps
Chai LifeLine http://www.chailifeline.org/index1.asp
List of Camps http://www.acor.org/ped-onc/cfissues/camps.html

For Siblings
Super Sibs http://www.supersibs.org/