(The Washington Post) – What has stuck with Vicki and Peter Brown for years, beyond the enduring grief of losing their only child, Matthew, are the emotional traumas they all suffered during his struggle with a rare form of bone cancer.
Living in a hospital for months on end, Mattie grew anxious and depressed. He feared CT scans and dreaded the sight of another phalanx of white-coated doctors marching down the hall to deliver what invariably was bad news. His parents, frantically trying to save him, struggled with sleepless nights, mounting financial worries — and overwhelming silence that engulfed their Foggy Bottom home when he died at age 7 in 2009.
The Browns often felt lost and alone. “It was just a horrific experience,” Peter Brown said. “And we recognized that the value of psychological, emotional, social support was just as important, if not more important, than the medical treatment.”
The couple ultimately launched a years-long effort to try to ensure that children with cancer and their families get the help they need for the non-medical aspects of the disease. Last week, their hard work paid off with the publication of the first national standards for the “psychosocial” care of children with cancer and their families.
The standards, published in a special issue of the journal Pediatric Blood and Cancer, are a road map for health-care providers from the moment of diagnosis into survivorship or bereavement. The Browns hope the rigorously researched standards will mark the first step toward putting in place a consistent level of care around the country, from massive cancer treatment centers to small-town community hospitals.