"It's OK for a parent not to feel like they need to have all the answers," said Maura Savage, a social worker at Children's Healthcare of Atlanta. "But there are a few things they can reassure their children: 'You won't be alone, to the best of our ability, it's not going to hurt, and we're going to be OK.'"
Research suggests that those conversations are beneficial not only for children, but for parents as well. In 2004, Swedish researchers interviewed the families of more than 300 children who had died after a terminal illness, asking them if they had talked with their child about their death. Nearly 35 percent of parents reported that they had talked about death with their child, and none of them reported regretting those conversations.
Of the parents who reported not talking to their child about their death, 27 percent regretted that decision.
To help parents begin a dialogue with their child, many hospitals have teams of doctors, social workers and other specialists who coach parents on how to talk and listen to their children about death. Once the conversation begins, the teams can help families make plans for the child's future and involve the child in decisions about their own treatment and death.
"Children do better the more involved they are in these conversations," Baker said.
Lewis said involving Emily in discussions about her cancer helped her to move beyond her condition and enjoy her life until the end. During her three-year battle with cancer, Emily kept going to school, earned an orange belt in tae kwon do and sang in her school's choir.
"I was so proud during the Christmas concert at her school. She was bald and had a feeding tube in, but she was up on stage singing with everyone else," Lewis said. "She felt empowered knowing what was going on in all aspects of her life."