Heart-wrenching talk: Parents’ directness helps sick child deal with death

By Kawanza L. Giffin

When Char Jensema learned that her daughter Vanessa had leukemia, she did what she believes many mothers would do.

She stayed by her child’s side, prayed for her 5-year-old child’s health, and decided to always be honest with all three children about what was happening in the family.

Nearly two years later, when doctors told Char and husband Rick that Vanessa’s bone marrow transplant had failed – meaning that her cancer persisted and the chances for her survival were slim – the couple held a family meeting to discuss their options.

“Nessa was so wise beyond her years,” she said. “They offered to tell her for us, but we wanted to do it at home, together, in a comfy setting.”

The decision to talk to a sick child about death is never easy.

Many parents struggle to do what’s right, but often wonder if they’ve made the best choice.

Though a Swedish study released in September found that parents who choose to talk to their children have no regrets, it also raises another, more basic question that all families of children with cancer face: How will our family handle our child’s cancer diagnosis?

“Nessa and I would talk about death and she would ask me things like, ‘What’s heaven like?’ or ‘Can I fly up there?’ ” Jensema said. “I was very careful telling her no one knew for sure what heaven was like – again the honesty issue – but I told her I often pictured it as the Garden of Eden – beautiful flowers, a river flowing, sunshine always.”

Three months later, in August 2001, Vanessa, 7, died at her Plymouth home after a summer spent swimming in the family’s new pool with family and friends and playing with her puppy, Buddy.

She was surrounded by her parents, sister Jessica, now 14, brother Trevor, now 8, and a few close family friends.

“We were all telling her how much we loved her and rubbing her arms and legs,” Jensema said. “She couldn’t talk to us much, but when we told her we loved her, she’d say ‘uh huh.’ ”

Honesty can be key, experts say

While experts say there is no correct answer for all families, most advise parents to be direct and honest with children about what’s happening to them.

They discourage parents from influencing children’s desires, and say parents should reassure children with love and support. Children must know the illness is not punishment for something they’ve done wrong.

Doing so will calm many children’s fears, said Eileen Clark, a certified child life specialist who works as a Communication Advocacy Respect and Empathy coordinator for the oncology unit at Children’s Hospital of Wisconsin in Wauwatosa.

“Kids fear that everyone else will be OK once they’re gone,” she said. “They also fear separation and being alone and because kids are literal, just telling them that you’ll be with them is comforting.”

Clark said she’s seen many children who have withheld feelings because they didn’t want to upset their parents.

That’s why it’s so important for parents to allow children to lead them.

“They’re only going to ask questions when they feel it’s safe for them,” she said.

Jensema agreed.

“Children are more observant then we give them credit for,” Jensema said. “They not only watch, but they feel tension.

“There have been times I put off an answer because I felt when they were asking they either couldn’t handle the truth because of age and such, or it was a place I didn’t want to go,” she said. “But kids know when parents are avoiding a subject, and depending on how determined they are, they will ask again.”

Still, talking to a child about death is not always the choice for each family. A family’s spiritual and cultural beliefs, as well as their life experiences, often play a major role in the decision.

Day-to-day challenges

And for families who are dealing with a recent diagnosis, other struggles may surface first, such as balancing care for the sick child with demands at home – spending quality time with each other and paying the bills on time.

“My husband says he’s a single dad now,” said Linda Pierce, whose 3-year-old daughter, Jessica, was diagnosed in late July with rhabdomyosarcoma, a type of soft tissue cancer that primarily occurs in the head and neck, the urogenital tract and the arms or legs.

In September, Linda, 38, of Sheboygan moved to the Ronald McDonald House in Wauwatosa so Jessica could undergo 23 sessions of radiation treatment at Children’s Hospital. Husband Lyle, 33, stayed home to work and care for 6-year-old Jennifer, who has diabetes and needs insulin injections four times a day.

“The first week they went out to eat a lot, but he’s gotten better,” Linda said. “He’s now picking out the clothes, but my girlfriend – who’s a beautician – is doing (Jennifer’s) hair.” The family decided to tell Jessica that she was sick and would have to spend time at the hospital because she is too young to truly understand what’s happening to her body. For Jennifer, they read her an age-appropriate book on cancer and gauged her reaction.

“She didn’t question anything,” Linda said. “She never even made a comment about Jessica’s hair falling out until one day she told us that she looked like a boy.”

Jessica, who had really short blond hair, now just has a few straggles on top. She enjoys watching her favorite movie, “Grease,” and playing with her toys when she’s not sleeping after the radiation treatments.

“When I look at Jessica, I see a bright, beautiful, strong little girl that we do want to see grow up with her sister,” Linda said.

Children are a part of families, something that can be easily forgotten during difficult periods.

That’s why it’s important that physicians treat the “family unit” throughout the course of the illness, said Bruce Himelstein, director of the pediatric palliative care program at Children’s Hospital of Wisconsin in Wauwatosa and an associate professor of pediatrics at the Medical College of Wisconsin.

As a result, many oncology units not only have doctors and nurses, but also other professionals such as psychologists, social workers, child life specialists and nutritionists to support any needs that may surface.

The approach ensures that the family clearly understands the impact of the disease and the decisions they may ultimately face, regardless of whether the expected outcome is cure or death, he said.

“At the time of diagnosis, the family will hear two things – first that their child has cancer and second that there’s a possibility that the child may die,” Himelstein said.

“You always plant the seed early, but somewhere down the line, you have to decide when to come back and address death,” he said.

Parents must face own feelings

Lewis Leavitt, medical director of the Waisman Center  on Human Development at the University of Wisconsin-Madison and a professor of pediatrics at the University of Wisconsin School of Medicine, said that parents often must confront their own feelings before they can talk to their child about what’s happening.

Leavitt is the author of a booklet, “When Terrible Things Happen: A Parent’s Guide to Talking with Their Children,” sponsored by the American Academy of Pediatrics, the International Pediatric Association and the Johnson and Johnson Pediatric Institute.

“Parents play the role, ideally, of being strong and being the people that children turn to for their questions,” he said. “But they may need help themselves.”

He advised parents to talk with professionals and other parents who can help them better understand what they’re going through and to not be afraid to express their feelings honestly and openly.

Leavitt explained that children understand what’s happening based on their developmental stage, and that parents must talk to their child in words that he or she can understand.

“Talking to children about death is not a one size fits all,” he said.

For example, infants and toddlers under 3 don’t really understand what’s going on – although they can recognize changes in adult behavior – and just need their normal, loving care. Preschool-age children may ask a lot of questions because the finality of death is confusing to them, he said.

Children between 5 and 12 have a basic understanding of the world and how it works and may need parents to listen and talk to them about their feelings, while teenagers often express sadness and anger and need their parents to show interest in their thoughts, Leavitt said.

“It must be recognized that the child’s awareness of imminent death is the crucial factor to be considered,” said Ulrika Kreicbergs, a registered nurse at the Karolinska Institute in Stockholm and author of the September study that was published in the New England Journal of Medicine.

Often children give subtle signals – such as through drawings or comments about a movie – and everyone in contact with the child should be aware of them, Kreicbergs said.

But Leavitt said no matter the age of the child, parents always should answer “truthfully, directly and concretely to the child.”

“When parents talk to the child about death, they find that the child is helped by it,” he said. “And being able to help a child with anything when you feel helpless is beneficial. You also don’t have to worry about woulda, coulda, shoulda, and you don’t have to say ‘if only I had,’ ”

Direct talk

Cheri Amore died when she was 17 after a stroke caused severe brain damage.

The Twin Lakes teenager was diagnosed with leukemia at age 3 and underwent a roller-coaster battle that included three bone marrow transplants, plus booster infusions of cells from her brother Andy, now 22, and another infusion of cells from her father, Damien “Buster” Amore.

At the time of her death in summer 2002, doctors said that there was no evidence of cancer in her body.

“What always amazed me was how much she understood – how much she truly comprehended,” said her mother, Cindy.

“She was always pretty resistant to talking about death,” she said. “We talked about it when she was older, but not when she was younger. She was very clear that she didn’t want to die.”

“I definitely had a talk or two with her about it,” Andy said. “I would never talk about it unless she brought it up.”

“The first time, in high school, she just said that she didn’t want to die and that she was sick of being sick,” he said. “I didn’t say much, just ‘I hear that’ and then I gave her a big hug. We both just sat there, but we both knew what we were thinking.”

Char Jensema says her family is comfortable with the decision they made.

“It’s the hardest thing, really,” she said. “When your child is born, you dream about the first day of school, the first sleepover, the first boyfriend, their wedding – always making plans for their future and all of a sudden the ‘c’ word and everything comes to a complete halt,” she said.

After the diagnosis, “we lived our lives so there would be no regrets,” Jensema said. “We knew it was the memories that would last us until we saw her again in heaven.”