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By Stacia Wagner
Thursday, March 22, 2012


At the recent Alliance for Childhood Cancer meeting Ruth Hoffman, a mother of a long term childhood cancer survivor, a stellar advocate for childhood cancer and the Executive Director of American Childhood Cancer Organization, started a discussion around what the medical team did or didn’t say when a child was diagnosed with a brain tumor. She had been collecting quotes from parents whose children were diagnosed with a DIPG.

She talked about how over and over she heard stories where the doctor came in the room stated the facts, gave a grim prognosis and left the room. Families felt abandoned, had no one to talk to and, unfortunately, many continued to feel this way. A doctor who is a member of the Alliance thought these stories had to be dated. We have come so far and we know how important providing support, not only at the time of diagnosis, but throughout the disease continuum is. We have pediatric oncology social workers trained specifically in the needs of these families. We have psychologists, child life specialists, clergy, nurses and others on the team who have specialized training in pediatric oncology. We can’t abandon families.

The unfortunate truth was many of the stories were current. The recent CBTF blog about difficult conversations written by a survivor and CBTF employee, Kayla Giacin, talked about how “awkward” peers can be when talking about brain tumors. Shouldn’t professionals be less “awkward”? Don’t all families deserve access to the support our medical teams offer? This is not to say there are not lots of teams doing amazing work and truly meeting both the medical and psychosocial needs of families. But until this is true for all families we are not doing our jobs.

Ruth’s comprehensive book on DIPG should be out this spring. We will keep you posted on it. If you need to have a conversation with your medical team and it’s not happening, ask you social worker to help you make it happen. Families may have to voice their needs until we can assure there is a universal standard of care that truly assesses each family’s needs throughout the disease continuum. 

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