By Corrie Pelc
An Act of Faith
It was just a week before Christmas 2002 when Placerville, CA resident, Mark Nielebeck realized something was wrong.
"It was over a course of about a two-week period that I went from having some rather severe headaches to progressing to vomiting and passing out and actually slightly hallucinating," he recalls.
After several hospital visits and lab tests, Nielebeck learned that he had a brain tumor located between the lobes of his brain in an inner ventricle. It had to be removed immediately and the difficult operation was scheduled for the first week in January 2003.
"It was just one of those times when you’re really not sure what’s going to happen and it was very scary," Neilebeck, recalls.
Nielebeck, a stockbroker, and his wife, Geri, faced having to tell their three sons, now ages 2, 4 and 7.
Nielebeck and his wife believed in telling the truth.
"We wanted them to understand that Daddy is sick and is going to need some attention from the doctor and specifically a surgical procedure," he says. "But we wanted them to understand as much of the facts as possible so that although they’re still going to be a little nervous, they’re not facing just fear."
The operation was a success and Nielebeck is back playing with his rock band, Hook, but he says he is glad he was honest with his children about his condition.
Keep Age in Mind
Being honest with their kids is exactly what Lyla Tyler, facilitator of the Children’s Art Therapy Support Group (CATS) at the Sutter Cancer Center in Sacramento, California, advises parents to do when telling their children they have been diagnosed with a life-threatening illness.
"The most important thing, is that the parents are honest with their kids and don’t try to shield them from the diagnosis because they’re going to pick up that something’s going on," she says.
At the same time, Tyler says, parents should keep in mind the ages of the children when deciding how to tell them.
Children up to 2 years of age will worry most about being left alone, she says.
"If they (the parents) are going to be in the hospital, they should reassure the child that they’re going to be home soon and make sure the child is with a familiar person who they feel safe with and arrange for frequent visits," Tyler says.
Children ages 2 to 7 will understand the illness a bit better and will need to be assured that they didn’t do anything to cause the illness.
"Kids that age are very self-centered," Tyler says. "And so that’s many times the first thought that comes to their mind is that, ‘I did something to make my mom sick’."
Tyler says a good way to talk to kids this age about a life-threatening illness, such as cancer, is by using the words "good" and "bad" because at that age they have a pretty good concept of what’s "good" and what’s "bad."
By ages 7 to 12, kids will be more concerned about the illness and parents will see disturbances in eating, sleeping, friendships or schoolwork, Tyler says. Children that age get very scared about their parent losing their hair due to chemotherapy.
"That’s a big thing for them so we warn them what’s going to happen," Tyler says, "but while we’re doing this we’re also instilling a sense of hope."
Once children hit the teen years things get more difficult, Tyler says.
"That’s a tough age and many times you’ll see with teens a lot of the things you’ll see in teens anyway -some rebellion and regression in their behavior and they may try to take on too much responsibility too quick," Tyler explains. "And then some will just take the illness in stride. The lucky thing about teens is that they can understand it more."
In the Know
Not only is it important for parents to understand what to tell their children, they must know when to do so.
When Karen Sapp was diagnosed with breast cancer the day before her eldest son’s birthday in 1993, she did not wait to tell her four children, then ages 5 to 10, what was happening.
"We told them right away," she recalls. "They knew going into treatment what was happening (to me) and they knew (about) the surgery that I had."
Lynnette Wilhardt, lead therapist for Kids Konnected, a national support and education program for the children of cancer patients, agrees that parents should tell their children as soon as possible.
"If they’re still searching and doing tests," she says, "they could tell the children, at that point, we’re not sure what’s going on right now, we’re just checking it out and as soon as we know, they’ll know."
As soon as parents have a diagnosis, she says, they should sit down with their kids and explain what is going to happen.
Donna Schuurman, executive director of the Dougy Center for Grieving Children, which runs the National Center for Grieving Children & Families, and author of Never the Same: Coming to Terms with the Death of a Parent, says not telling children can actually make matters worse.
"In an information gap, kids create scenarios that often are as fearful or more fearful than what is really happening," she explains. "And they know when they’re being excluded. When they’re excluded - they sense it, they feel it, they can tell by the way people look and pace their words, by their voices going down, by conversations changing when the kids walk in the room. That’s the stuff that really freaks them out."
Schuurman adds that by withholding information, parents can make their children feel that they can’t trust their parents to give them accurate information.
"Kids want to feel important and valued and included," she says. "I’ve heard a lot of kids say ‘they didn’t even care enough to tell me what was going on,’ and I’ve heard this from 4-year-olds, so it’s not just teen-agers. I think a lot of times we tell ourselves we’re protecting them and I think sometimes that’s true, but in our protection we’re making it worse and a lot of times we’re protecting ourselves because we don’t want to see their pain."
Being included can also mean allowing children to come to doctor’s appointments if they want to, says Wilhardt.
"The parent should always say do you want to go to the doctor appointment with me, are there any questions you want to ask the doctor," she says. "Some kids are going to be really interested in that and other kids are not going to want anything to do with it. Either way is OK, but they should have the opportunity, should they want, to be more involved. Even if a parent is getting chemotherapy, they could go to the chemo and see them get the chemo. Knowing what’s going on just means there’s less imagination going on so that means there’s usually less fear."
How to Deal
And while most professionals agree the right thing to do is to tell children, parents should be prepared for the children’s emotions and reactions - such as anger, fright, anxiousness and grumpiness.
Schuurman says one reaction children may have is guilt - "If I’d been a better son or daughter my Dad wouldn’t be sick." Other concerns might include "If Dad dies who will take me camping?" or "Will I have to move and change schools?"
"Sometimes those can seem to parents like selfish or inconsequential concerns in the light of a death, but they’re age-appropriate," she says. "Those are all fears and valid fears and concerns, where kids need to know there’s a safety net for them and know there will always be someone there for them."
Getting help in dealing with these emotions is where a support group comes in, says Tyler.
"I think that a lot of times kids are afraid to talk to their parents because they don’t want to make them cry or make them more sad," she says. And so they’ll come into a group like this and will feel safe in a supported place and will open up and start to talk about their feelings and some of the things they don’t share with their parents. It’s also great for them to be around other kids that are having the same experience so they don’t feel so alone."
In Sapp’s case, having the majority of her now seven children attend the Just for Kids support group run by the American Cancer Society has helped them get through it.
"It gives them an opportunity to just be kids during the time their parents are fighting for their lives and have to be so serious," she says.
Keep It Normal
Attending support groups are one way for children to cope. Another way is for the well parent to try to keep a sense of normalcy in the child’s life, says Schuurman.
"Try to keep as much normalcy as possible, so if the family routinely has dinner at 5:30 every night try to keep doing that or let them continue to play baseball, find people who will take them. Try to keep routine to the degree that it’s possible so that you’re minimizing the other changes in their life."
Hunter says that keeping a sense of normalcy can differ by age group.
"Infants and preschool-age, keep the number of people who are taking care of them to a real minimum because the more change, it kind of breaks down their sense of trust," she explains. "With school-aged children, you want to really work at keeping their normal activities and routines going. And with teen-agers you want to really encourage their friendships, because they’re really into their activities and friendships."
Tyler also advises the healthy parent to make the children feel like they’re helping in some way.
"When someone’s sick like that you feel so helpless," she explains. "Define a role for that child so that they can feel like they’re doing something for the person who’s sick, whether it’s to help make a welcome home sign from the hospital or cooking a special dinner for mom who’s recuperating -†something like that so they feel they’re contributing in some way."
But when it comes down to trying to reassure their children that everything, no matter the outcome, will be all right in the end, Wilhardt says it all comes down to faith.
"This is where faith is a really good thing, so no matter what your faith you have that to rely on," she says. "To say there’s a grand plan out there somewhere and I know it seems like this is really unfair and wrong, but we have to trust it and that’s what faith is all about. In the really tough times you still have to trust that."
Can I Still Kiss You?: Answering Your Children’s Questions About Cancer, by Neil Russell, Health Communications, 2001.
Cancer in the Family: Helping Children Cope With a Parent’s Illness, by Sue P. Heiney and others, American Cancer Society, 2001.
How to Help Children Through a Parent’s Serious Illness, by Kathleen McCue and Ron Bonn, St. Martin’s Press, 1996.
Never the Same: Coming to Terms with the Death of a Parent, by Donna Schuurman, St. Martin’ Press, 2003.
Talking with Children About Loss: Words, Strategies and Wisdom to Help Children Cope with Death, Divorce and Other Difficult Times, by Maria Trozzi and Kathy Massimini, Perigee, 1999.
When a Parent Has Cancer: A Guide to Caring for Your Children, by Wendy S. Harpham, HarperCollins, 1997.
The Dougy Center for Grieving Children/National Center for Grieving Children & Families -Portland, 503-775-5683, www.dougy.org.
Just for Kids
American Cancer Society, www.cancer.org.
Kids Konnected - www.KidsKonnected.org
Helping Children Cope with Grief
Different Ages, Different Responses: How Children Perceive Death
Corrie Pelc is a writer in the San Francisco Bay Area.