When parents have cancer: Tips, resources for helping the kids

Mar 10, 2013 (The Oregonian - McClatchy-Tribune Information Services via COMTEX) -- On top of the shock and fear and stress, Jacki Sturkie had this to bear when she learned she had cancer: Her 11-year-old, Steven, saying through his tears, "I want to die before you do." Sturkie, 46, a Southeast Portland resident who also has a daughter, Olivia, 8, got a diagnosis of breast cancer in November and soon after began six rounds of chemotherapy, which are nearly done. In April, she's scheduled to have a double mastectomy.

Sturkie said her diagnosis was especially frightening for her children because her mother-in-law died several years ago of ovarian cancer.

"My son freaked out because he remembered every single thing about it," Sturkie said. "He was just holding me and crying and saying, 'I want to die first' and 'I can't live without you.' " Olivia hasn't been as openly emotional, Sturkie said. But Sturkie woke up one day to find a paper bag that Olivia had decorated with hearts and a breast cancer awareness ribbon. The girl has also drawn comic strips featuring "Weird Cancer Guy." One speech bubble says, "Get him!" Another: "I hate him!" Still, the kids have refused to attend an art therapy group. And at the mere mention of a camp for kids whose parents have cancer, "my daughter reacted like I was going to sell her to another family," Sturkie said.

Sturkie wonders if she should insist that her kids attend support programs.

She also wonders how her family will go forward after her mastectomy. "How do you reconcile this entire experience and make it more positive than not " To help Sturkie and other parents with cancer, we got advice from Krista Nelson, an oncology social worker at Portland's Providence Cancer Center, who is president of the national Association of Oncology Social Work, and Jana DeCristofaro, coordinator of children's grief services at the nonprofit Dougy Center in Portland.

Talk early and often: "Kids are so perceptive, even the youngest kids -- they're really tuned in to any shifts in their home," DeCristofaro said. Children pick up on changes in their parents' behavior, tone of voice or emotions; they notice when phone calls are taken in a different room, she said. "Clear up the mystery for them and let them know what's happening" -- or they might imagine something worse.

It's OK, DeCristofaro said, for parents to admit that they don't know much about their prognosis or treatment plan. The key is to communicate.

"Kids don't want to hear it secondhand," Nelson said. "I tell families, 'You will feel so much better when there's not a secret.' " If you have more than one child, Nelson recommended telling the kids together "so they feel like they're getting the same information." While DeCristofaro and Nelson said there's no "right" way to tell the kids, they did have two caveats.

"Don't tell your kids right before they go to bed," Nelson said.

And both women said parents should use medical language, not euphemisms such as "Mommy's sick" or "Daddy needs medicine." Nelson noted that while words such as "radiation" can upset adults, they don't necessarily have the same significance for children.

Don't worry about crying while you share the news, Nelson said. You'll be modeling a normal, acceptable reaction.

Some parents want to keep a cancer diagnosis secret to protect their children. But Nelson said that hurts kids more than it helps them. "Your job isn't to protect your kids from all the challenges in the world, but to help them cope with all those that arise," she said.

She added that if your cancer recurs or worsens, "they may not trust you because you haven't been honest with them in the past." Ease the burden: If your kids ask why you got cancer, emphasize that it's not anyone's fault. Kids often engage in magical thinking (see: Easter Bunny) and are naturally self-centered, so some might worry that a parent is ill because of something they've said or done, Nelson said.

She said it's equally important to let kids know they can't derail your recovery: "If we have a fight one day, that's not going to make the treatment not work." If your children have other adults whom they can confide in -- an uncle or aunt, coach, pastor or teacher -- encourage your kids to do so. And tell the other adults you're being open with the children, Nelson said. "That way no one has to know the rules of what's OK and what's not OK to say to your kids." Speaking of teachers, Nelson advised parents to tell their kids' schools what's going on. "The best way to take care of your kids is for the people who see them day in and day out to know." Nelson also said sending children to a support group is helpful. They can say, "It stinks to have a mom with cancer!" and know that the other kids will understand.

If kids resist support services, don't force them. But ask why. Maybe, DeCristofaro said, "they think that going to the art therapist means something is wrong with them." Or maybe they don't like the fact that a support group meets at the hospital.

Give them choices: Nelson advised parents to come up with age-appropriate ways for kids to help -- drawing pictures for Mom to have in the hospital, bringing Dad a glass of water when he gets home from chemo. That lets kids know they matter.

If your prognosis is good, start talking near the end of treatment about resuming family activities you used to enjoy together and asking the kids what they'd like to do.

Be tolerant: Expect some regression, especially in younger kids.

Siblings may react differently, as Sturkie's kids did. "Say, 'It's OK that you're having different reactions -- it doesn't mean you love me more or less,' " DeCristofaro said.

Don't take offense if they would rather go to a friend's house than sit with you. In fact, Nelson said, if they're eager to race off to a birthday party, "then you raised your child exactly right." Tackle mortality: While you shouldn't promise your child that you won't die, you can say that you and your doctors believe your cancer is curable and your treatment will work, DeCristofaro said. You can say, "My plan is to be as healthy as possible." Nelson suggested this script: "None of us know when we're going to die ... the doctors don't think that's going to happen right now." Add that if anything changes, they'll be the first to know.

Nelson said research indicates a parent's battle with cancer doesn't seem to have long-term negative effects on emotionally healthy kids.

"That doesn't mean that your child, if Mom gets sick, they can't have a hard time," she said. But researchers have found some kids end up with more empathy and compassion and closer family bonds.

"It's all about the communication." - Amy Wang; on Twitter ___ (c)2013 The Oregonian (Portland, Ore.) Visit The Oregonian (Portland, Ore.) at www.oregonian.com Distributed by MCT Information Services

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