1314 Finding Other Families: Listservs and On-line Communities


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07-01-09 05:10 PM
1314 Finding Other Families: Listservs and On-line Communities

 Download printable version: 1314 FindingOther Families: Listservs and On-line Communities

Afterour children were diagnosed with neuroblastoma, most of the parent authors ofthis Handbook felt alone in a way never known before.  Family and friendscircled around us in support, many of them with stories of family members andfriends who had been cured of cancer.  But it didn?t always help.  What we wanted was to connect with otherneuroblastoma parents, and know that their kids were okay.  We wanted tohear success stories from people who had experienced exactly what we werefacing. 

Oneparent recalls the day she finally met another stage 4 neuroblastoma family ather hospital -- the child was close in age to hers and had respondedsuccessfully to treatment.  She recallsneeding to meet them like needing to eat that day.  It gave her the firstreal sense of hope she had felt since her child?s diagnosis.

Ifyou are reading this, chances are you?re a parent, family member, or closefriend of a child with neuroblastoma.  Whether you?re right at thebeginning of the journey or several months into it, you may have few or noacquaintances in the neuroblastoma community.  If you wish to reach outand connect with other neuroblastoma families (and not every parent does), knowthat it can easily be done.  Afterreading this short section of the Handbook, you will have the ability toconnect with hundreds of neuroblastoma families -- online, by phone, or even inperson.  Support, hope, and neuroblastoma success stories from those whohave walked the walk are definitely out there.

Thelargest support group of NB parents can be found online ?on the N-BLASTOMAlistserv sponsored by the Association of Online Cancer Resources, or?ACOR.?  For many of us, finding thisgroup was like finally glimpsing a lighthouse from a stormy sea.  You cansubscribe to the group on the ACOR website. Click on ?MAILING LISTS? at  www.acor.organd look under "N" or go to http://listserv.acor.org/archives/n-blastoma.html.You will see N-BLASTOMA listed. Click on ?join or leave the group? and you canjoin the group immediately.

N-BLASTOMAis an active online group of parents from hospitals across the country andaround the world.  Its members offergeneral support as well as information and personal insights about any and allaspects of neuroblastoma treatment (including frontline and relapse). Currently there are over 650 subscribers, all of them families and friends ofchildren with neuroblastoma.  Posting a question or a ?hello? on theN-BLASTOMA listserv will get you responses within hours, or sometimes evenminutes, depending on the urgency of your message.  You will find lasting,valuable connections with parents who have experienced in the past or arefacing now exactly what you?re going through. 

Onceyou join, posts can be sent directly to your e-mail.  Some parents havefound it helpful to create a filter using N-BLAST as the filtering keyword, anda separate folder for this mail to be sent to, like ?NB? or ?N-BLAST?. This way, any e-mail from the forum will be sent to a separate folder and willnot take over your Inbox.  The emails can also be received in a daily orweekly digest.

Keepin mind that there is no requirement to ?post.? The N-BLASTOMA listserv is in effect an online bulletin board and, ifdesired, you can monitor and benefit from it without ever revealing yourpresence.

Anotheronline support group (newer and currently less active) can be found on theChildren?s Neuroblastoma Cancer Foundation website.  Go to www.nbhope.org,and at the top of the home page, under ?Community,? select ?Forums.?  Hereyou can join the forum, and posts can be viewed on the website or sent to youre-mail.

Manyneuroblastoma parents have found it invaluable to become friendly with theother pediatric cancer families at their hospital.  Even if you connectwith a family whose child does not have neuroblastoma, chances are they knowsomeone who does.  They can connect you with other families, and soon.  It often evolves into a network of local parents that you can talkwith, meet for coffee, or even schedule time together with your children. No one understands your child?s weakened immune system like another familywho?s been there, and issues such as special accommodations or last minutecancellations won?t bother a parent who has had to cope with a sick child oftheir own.  Many parents form close relationships that continue long aftertheir children?s treatments have ended.

Youcould also mention to the nursing staff and social worker of your hospital thatyou would like to meet other neuroblastoma families.  Although privacylaws prohibit them from giving you names, phone numbers, room numbers, or anyother information, once you tell the hospital staff that you?d like to becontacted, they will pass your contact information along to someone else withyour permission. 

Ifyou have a local cancer resource center, it may offer the opportunity toconnect personally with local cancer families.  Many such centers,primarily those in urban areas, offer programs, networks, and support groupsfor families.  Even if support groups are not available, your local centermay be able to connect you with other families in the area just by taking downyour contact information and spreading the word.

Youcan also network with parents of children with neuroblastoma at annualconferences and other events held by various pediatric cancer foundations.  The Children?s Neuroblastoma CancerFoundation has an annual conference for neuroblastoma families, offeringpresentations by neuroblastoma specialists and social events for the families.  Many of the parents on the N-BLASTOMAlistserv attend this annual conference in order to connect in person with eachother.  Events for families are alsosponsored by Curesearch, Alex?s Lemonade Stand, the Rally Foundation, etc.(although these are foundations focusing on funding research for all pediatriccancers).  By registering on the websitesof such foundations you can receive updates of their events. 

Ifyou haven?t done so already, consider starting a CaringBridge or Care Pages website for your child (see?Keeping Friends and Family Informed?).  Not only will such a website helpyou communicate updates to people without being bombarded by e-mail and phonecalls, but you will be surprised at how quickly word of your website spreads. Through friends of friends of friends, you will receive messages from othercancer families, and eventually from neuroblastoma families, in the online?guestbook? these free website services provide.   For example, oneparent learned her sister-in-law?s best friend worked with a neuroblastoma momliving about an hour away.  She posted in the parent?s guestbook and thatparent then visited her son?s website.  This simple connection created alasting friendship, yet they would never have found each other on theirown.  When visitors leave contact information in your online guestbook,you can then visit their websites and in this way gradually become part of anetwork.

Ultimately,whether and how you wish to connect with others in the neuroblastoma communityis a very personal decision.  You may learn that connecting in person withother neuroblastoma parents is an invaluable source of support and hope for you? or you may decide to be a ?silent? member of an online support group andabsorb the available information privately at your own pace.  Each parent copes in a different way.  Our purpose in setting forth these varioussuggestions is to merely to make sure that you know that these various sourcesof support and information are available. Neuroblastoma treatment can be long and arduous, and we wish you to knowthere is a uniquely caring community of neuroblastoma parents available for anywho feel it would be helpful.

Pleasecontact editors@nbhope.org with anycomments


 Download printable version: 1314 FindingOther Families: Listservs and On-line Communities