Childhood Cancer

Childhood Leukemia

Chapter 26: Death and Bereavement

“The loss of my son has illuminated for me the true definition of love… In this book I have tried to capture a few remembered strains of the brief, glad music of his life. These are all I have of him now, and they comfort me even as they break my heart.”

— Gordon Livingstone, MD Only Spring

THE DEATH OF A CHILD CAUSES almost unendurable pain and anguish for loved ones left behind. Death from cancer comes after months or years of debilitating treatments, emotional swings, and financial stress. The family begins the years of grief already exhausted from the years of fighting cancer. It is truly every parent’s worst nightmare.

In this chapter, many parents share their innermost thoughts and feelings about their decisions to transition from active treatment, involve hospice, choose death at home or in the hospital, and their experiences with grief. It made no difference whether parents had recently lost a child or whether it happened years before—tears flowed when talking about their family’s experience. Because family members and friends can be strong sources of support, or casualties of the grieving process, parents describe words and actions that help. They also offer suggestions about what words and actions to avoid. Grief has as many facets as there are grieving parents; what follows are the experiences of a few.