Parents from small, isolated communities or who live a long distance from their treatment center may have a difficult time finding a local support group that fits their needs. This may also be true for single parents or parents who prefer some anonymity. For these parents, online support groups can provide the understanding that only another parent of a child with cancer can give.

The support I have gained through online discussion groups is priceless. I have received a great deal of comfort from my participation in these groups. They have enabled me to connect with families from all over the world, many of whom are fighting the exact same disease. I have often come to my computer in the middle of the night, when everyone else in the house was asleep. I can express my fears at 3:00 a.m. and know someone will always be there to reassure me with the knowledge that they have felt these things, too. That’s one of the most beautiful things about these groups. Someone is always there, even in the middle of the night.

To find online discussion groups, you can search the lists on www.acor.org or groups.google.com. Parents or guardians of a child with cancer can join the popular Momcology discussion groups on Facebook (for any primary caregivers, not just moms) by filling out an application at www.momcology.org. Several national support groups are listed in Appendix C, Books, Resources, and Support Groups. Some online discussion groups are not moderated, but many are carefully monitored by experienced peer-support leaders.

I joined a Ph+ Facebook group—all moms. I connected with some brilliant women who were months and years ahead of us in treatment, some on the same trial. They were incredible sources of accurate information as well as emotional support. There was not a lot of data on the new treatments, but we had several smart, fearless, and tenacious members who would read every new article and clinical study document, and would call the principal investigator to get additional info. We would all share what we were learning with the group. Because TKI [tyrosine kinase inhibitor] treatment was still emerging, this group of Ph+ patients and parents was an immense help.

• • • • •

How ironic that we subscribed to this list in a moment of panic, with a black cloud lined with despair lingering above. But now we can say we have lassoed cyberspace, and here, among new friends, we have found and we have shared love, hope, support, informative information, mutual stories, mutual questions, thoughtful and sincere answers, honesty, disagreement, pain, inspiration, friendship, humor, and enjoyment, as well as understanding. This list reflects the roller coaster of life. Activity on this list enables individuals to place that initial black cloud in their back pocket, hold sunshine in their hand, and watch hope dance above.