Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Online Support Groups

(these are for parents; kids and teen online groups are listed on their separate pages)

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:

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

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.

Leukemia/lymphomas

ACOR list: ALL-kids
Parents of children with ALL, Acute Lymphoblastic Leukemia

ACOR list: ALL-kids-relapsed
Parents of children with relapsed ALL, Acute Lymphoblastic Leukemia

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.)

Neuroblastoma

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.

Brain Tumors

ACOR list: Medullo-pnet
Parents/caregivers/doctors discuss the brain cancers, medulloblastoma and PNET.

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:

Pediatric GIST

ACOR list

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.

Community.LSOFT.com list

Click here to join the Pediatric GIST and Carney's Triad list.

Rhabdomyosarcoma

ACOR list: Rhabdo-kids
Parents/caregivers of children with rhabdomyosarcoma

Wilms Tumor

ACOR list: Wilms-kids
Parents/caregivers of children with Wilms tumor

Retinoblastoma

ACOR list: R-blastoma
Retinoblastoma.

A list for survivors of retinoblastoma and parents of children who have or had retinoblastoma.

ACOR list: Rb-survivors
Retinoblastoma.

A list for survivors of retinoblastoma and parents of children who have or had retinoblastoma.

Mesenchymal Chondrosarcoma

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.

Bereavement, Hospice

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.

More Lists

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).

General Disclaimer

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.

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