ONCABOM

“Oncabom! Oncabom!” my 21-year-old patient with Down Syndrome and acute myeloid leukemia (in remission) happily repeated over and over again in my office on November 5th. Puzzled, I looked towards his mother, who smiled and said, “He can’t say Barack Obama, so he just says what he can instead.” Through gritted teeth across the room, his father dryly noted, “He and I share different political views I’m afraid.”

We all laughed, but it made sense to me. I could imagine my patient gleefully saying something like this at home, and I could picture his trips with his family to his local church, to a neighbor’s house for a barbecue, or to the local Target where he liked to walk through the aisles for fun.

The reason for this is my patient’s mother’s attachment to CarePages, a website like Caring Bridge and others that provide the free opportunity for patients and families to host personal blogs and websites. As social networking for the patient community, this type of service allows patients and family members to reach out to and gain support from their families and communities who may read and participate in their journies via the web.

But for me, as a physician, this service has been immensely helpful as well. After being invited to view his mother’s CarePages blog, I have been able to follow my patient throughout his illness experience. While my patient was hospitalized for induction I frequently was able to understand and respond to his mother’s concerns, sometimes about important and otherwise unnoticed symptoms and exam findings, even before my intern reported them to me on patient rounds. I was able to track my patient’s recovery at home after discharge and after consolidation, and could follow day by day his improving strength and richer social interactions with his family and friends. And I could begin to understand the dynamics of his relationships with his family and with the important people in his life.

Have any of you had patients or families who have invited you to view their websites or blogs? And have you found this a helpful experience?