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Online Support Groups
Members of online mailing lists, or listserves, communicate by e-mail. Listserves (or lists for short) work especially well as means of communication for house- or hospital-bound parents of kids with cancer. A number of listserves for parents of children with cancer are listed below; each offers the support of a group of parents facing similar challenges.
If you are not familiar with listserves:
- What to expect when you join a listserve
- Privacy issues
- Definitions and Courtesies explanations of some of the slang used in lists and a little about list courtesies
E-mail lists are not the only formats of online support for parents of or children with cancer. There are also message boards, chat rooms, and IRC. Message boards are accessed through your web page browser without any e-mail involvement. Chat rooms are real-time talks accessed via a web browser. IRC chat is a real-time chat accessed through IRCLE, an application that you download expressly for this purpose.
E-mail lists for childhood cancers (general)
ACOR list: Ped-onc
Parents of children on/off treatment for all types of cancers
Ped-onc was the first ACOR list for parents, family, and friends of children with childhood cancer. Ped-onc was formed in January 1997. The children have all types of cancer: leukemia, neuroblastoma, brain tumors, rhabdomyosarcoma, etc. Many of the original members are still subscribed to help newly diagnosed families.
Historically, ped-onc is the parent pediatric group on ACOR, since it was the first and the groups for specific cancers (ALL, rhabdomyosarcoma, wilms, neuroblastoma) branched off from ped-onc.
ACOR list: Ped-onc survivors
Parents of children who are off-treatment for childhood cancer
The ped-onc-survivors listserve 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.
Yahoo list: Rainbow Childhood Cancer Connection
LGBT families dealing with a cancer diagnosis, treatment, survivorship, or loss of a child.
If your LGBT (lesbian gay transgender) family has been touched by childhood cancer you are not alone!
Yahoo list: Breastfeeding and Childhood Cancer
This is a support group for mothers who are breastfeeding childhood cancer patients, and their families, and also a forum for the exchange of research and information related to breastfeeding and cancer treatment.
AOL message board: POKWC
Parents of Kids With Cancer
Parents of Kids With Cancer board at AOL (America Online). If you subscribe to AOL, you can access the POKWC board by going to the Keyword Button type and type in "Better Health". This will take you to the Better Health board. There you will see topics such as "cancer" click that and go to the message boards where you look for "Parents of Kids with Cancer".
ACOR list: bmt-talk
Bone marrow transplant talk
This group is not specific for pediatric concerns, however, it is an excellent support group for bone marrow transplant concerns and often parents join both this list and also one of the peds-specific groups if their child has a bone marrow transplant.
Rare Cancer Alliance Forum: "Rare and Pediatric Cancer"
ACOR IRC chat: Oncochat
(Not pediatric cancer specific.) The above link to Oncochat explains IRC and guides you through the steps to joing the chat.
ACOR list: ALL-kids
Parents of children with ALL, Acute Lymphoblastic Leukemia
This group is for parents, adult friends, and adult caregivers to children with acute lymphocytic leukemia. This includes parents' experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices.
ACOR list: ALL-kids-relapsed
Parents of children with relapsed ALL, Acute Lymphoblastic Leukemia
This group is for parents, friends, and caregivers to children who have relapsed with ALL.
ACOR list: infant-ALL
Parents of children with Infant ALL
This group is for parents, adult friends, and adult caregivers to infants (diagnosed at age up to 1 year) with acute lymphocytic leukemia. This includes parents' experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices.
ACOR list: ALCL-kids
Parents of children with ALCL, Anaplastic Large Cell Leukemia
ALCL is a rare, aggressive form of leukemia that is usually typed as a non-Hodgkins lymphoma.
ACOR list: AML
The AML list is for patients, loved ones and others who have an interest in Acute Myeloid (or Myelogenous) Leukemia. Survivors include AML patients, spouses or other caregivers for AML patients and parents of AML patients (both adults and children). The health and social problems related to treatment as well as the psychological and emotional impact of the disease and its treatment are freely discussed.
Yahoo list: JMML Support Group
juvenile myelomonocytic leukemia
This is a web forum for JMML families to regularly meet, post messages, chat, exchange information, and provide support to one another.
Yahoo list: Infant Leukemia support group
For caregivers of infants with leukemia.
Yahoo list: Infant Leukemia Angels
For parents and caregivers of angels lost to Infant Leukemia.
CancerKids message board: Leukemia
Yahoo list: T-Cell Leukemia
For parents of Children being treated for T-Cell Acute Lymphoblastic Leukemia
ACOR list: ped-lymphoma
Parents/caregivers of children with lymphoma.
MSN message board: Parents of Kids With Leukemia
The link above takes you to the home page for this group, including a list of members' homepages. The group also has a chat room. (You need to have a sign-in.)
ACOR list: N-blastoma
Parents of children with neuroblastoma
This is an unmoderated discussion list for patients, family, friends, researchers, and physicians, to discuss clinical and nonclinical issues and advances pertaining to neuroblastoma. This includes patient experiences, psychosocial issues, new research, clinical trials, alternative therapies and discussions of current treatment practices.
ACOR list: Medullo-pnet
Parents/caregivers/doctors discuss the brain cancers, medulloblastoma and PNET.
Communicate with parents, patients, relatives and doctors through e-mail on the subject of Medulloblastoma and PNET brain cancers. Although the list is primarily a medulloblastoma list, any primary brain tumour will not be turned away. Some other representative cancers include: ependymoblastoma, pineoblastoma, spongioblastoma, and other types of childhood primary brain and spinal tumours.
Brain Trust list: Braintmr list
Brain tumors (not pediatric specific)
Braintmr is a listserve for brain tumor patients and caregivers.
Yahoo list: Cerebellarmutism
This is a list of approximately 65 people who share a common interest in these complications from posterior fossa surgery. The files and book marks are one of the best aspects of this site. There is an annotated bibliography from a medline search on cerebellar mutism, a bibliography on radiation and cognitive effects, and several articles from a speech pathologist. Several parents as well as medical professionals are on this list.
Yahoo list: Pediatric Brain Tumor
An active list consisting primarily of caretakers of children with pediatric brain tumors of all varieties.
Other Brain Tumor Lists
There are quite a few more email lists for specific brain tumors, or for caregivers. Try the following links if you have not yet found a group that is suitable for your situation:
http://groups.yahoo.com/ and search for a particular type of brain tumor
The adult GIST group has members who are parents of children with pediatric GIST. LifeRaftGroup (LRG) on ACOR. Go to www.acor.org and search for GIST.
ACOR list: Rhabdo-kids
Parents/caregivers of children with rhabdomyosarcoma
ACOR list: Wilms-kids
Parents/caregivers of children with Wilms tumor
ACOR list: R-blastoma
A list for survivors of retinoblastoma and parents of children who have or had retinoblastoma.
ACOR list: Rb-survivors
A list for survivors of retinoblastoma and parents of children who have or had retinoblastoma.
Yahoo list: MesenchymalChondrosarcoma
Mesenchymal chondrosarcoma is cancer of the cartilage. Mesenchyme are embryonic cells from which cartilage are formed. Chondrosarcoma is a malignant tumor originating from connective tissue. Mesenchymal chondrosarcoma is a special variant of chondrosarcoma, and is much more rare.
ACOR list: ped-hospice
Parents/caregivers of children in hospice care.
One of the hardest decisions any parent will ever face is placing their child in end of life treatment. The PED-HOSPICE group is composed of parents whose child with cancer is currently in hospice care, who are facing the decision to place their child in hospice care, or whose child was in hospice care. This discussion group provides support, comfort, ideas and information.
Yahoo list: DayByDay
"A list for parents of children who have died from cancer, and for parents whose children's treatment options have been exhausted. The list is called DayByDay, to reflect how we as parents get through our new lives. Discussion on the list is open to any issues (coping, anger, fear, peace, etc.) that concern having a child die or having a child near death. The list will not be archived, in the interest of privacy. And we'd like to request that you put "Introduction" into the subject line when you introduce yourself, to make these messages easier for list members to save."
Yahoo list: JP Net
JP Net, the Jewish Parents Network. A support list for Jewish parents who have lost a child.
Yahoo list: MonthByMonth
For parents who are two or more years out from the death of their child, contact Liz at Stocktrdenbabe@aol.com.
ACOR: Complete list of lists.
Although not specific for pediatric concerns, other lists such as ewings, sarcoma, hodgkins, and nhl are helpful for these specific cancers. Also note the Faith (faith and coping with cancer), JP-NET (Jewish parents network), and CPCOS (Cancer Patients Christian Online Support Group).
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.