Culture

How Sick Parents Deal with Kids

Lily Wilson is 4 years old and likes to pretend she's a nurse. When real nurses come to her house in Worcester, Mass., Lily helps out. "She takes my temperature and watches them change my bandages," says her mother, Mary Lynne Wilson. A few months ago, Lily learned to pronounce "chemotherapy," and an hour down the highway, at the Dana-Farber Cancer Institute in Boston, the staffers know her name. "It's a happy place for her, I think," Wilson says with a shrug. "She'll come home and say, 'Mommy, I had such a good time at the doctor's office today." Someday Lily may see Dana-Farber differently. Last year Mary Lynne was there with a rare and serious form of gastrointestinal cancer originating in the appendix. Surgery and three different drugs have not stopped the tumors from invading her diaphragm and liver. Still, she appears healthy and filled with hope. "Neither one of the kids seems upset or depressed," says Mary Lynne, who tries to appear just as composed as Lily and her brother, Matthew, 10. " I have to show them by example that when things are bad, you keep going, and I think it helps everyone if I'm not sitting around sad all day."

Mary Lynne Wilson is strong, but not unusual. She walks the same fine line as all parents who are diagnosed with serious illnesses while their children are still young: How do I protect my kids from pain while I am in it? Over the past three decades, doctors have transformed the way they help patients face the possibility of dying. Where they once avoided the topic for fear of discomfort, today they approach it in a way that is gentle but direct. Adults, they have realized, crave straightforward answers. Now doctors are acknowledging that kids do, too, and physicians are changing the way they help patients prepare their kids to deal with illness in the family.

In the past few years, major hospitals have begun to offer programs designed for parents like Wilson who have serious or incurable illnesses. Most of the programs are still embryonic. Some, like Dana- Farber's, focus on helping families outside the hospital, usually via the Web. But a few have blossomed more fully. The most comprehensive is at the Massachusetts General Hospital Cancer Center, where each year, hundreds of families receive individualized parent guidance. Highly trained clinicians are on call, ready to help with dilemmas from the mundane (Who will drive Brandon to school when I'm at chemo?) to the technical (How do we tell Brandon what chemo is?) to the profound (How do we tell him the chemo isn't working?). "Talking about something like cancer with your kids doesn't come naturally," says Janice Hayes-Cha, who has been treated at MGH since 2005 for both colon and breast cancer. "But they were really good at warning us about what questions might come up."

Knowing what to expect in conversation is often the biggest challenge. Like Tolstoy's unhappy families, each family experiences a serious illness in its own unique way. Discussions that "seemed like they would be one-way" can quickly take surprising turns, says Hayes-Cha. As the mother of a 7-year-old, a 5-year-old and 3-year-old twins, she learned that kids reprocess their feelings each time they enter a new stage of development—so a question that's already been answered may well come up several more times. Stoic kids, volatile kids, quiet kids and inquisitive kids will all respond differently, and in changing ways, as their personalities develop.

Nonetheless, clinicians and counselors have been trying to formulate guidelines that can apply to all families at all times. They've found that children usually have three big questions about their parents' worsening health. All of them need to be answered head-on. Surprisingly, all of them can be.

Am I going to get sick, too? For a kid whose idea of being sick is catching chicken pox from a classmate, contagion and illness are intrinsically linked. Parents with cancer and other noninfectious diseases may have to explain, first off, that the kids aren't in danger. "That was one of the most interesting conversations we had with our kids," says Hayes-Cha. "My daughter thought I got it from our twins. My son thought I got it at Storyland because we went there just before we told them. Later, he was thinking about a friend of ours who had breast cancer, and he said, 'I think it spread in her body because people were hugging her too much.' Eventually he started thinking, Am I going to get it, too?"

Saying "no" to such a question is fairly easy. What's harder is explaining why a parent has developed a disease in the first place, especially when doctors themselves don't fully understand the disease process. "I tried to explain about genes to my son, and how they're these little switches that turn on and off and they can work wrong," says Hayes-Cha. "Then I realized he thought I was talking about jeans, and I was, like, 'Oh, forget it, we don't really know'." Sometimes parents may have no choice but to keep things vague. There is, however, one principle that most counselors agree on: don't call it a boo-boo. If you do, the kids may assume their own boo-boos are just as serious. And if their parents are scared of a word—cancer—they'll be scared of it, too.

Is it my fault? Younger kids "think of themselves as the center of the universe," says Nancy Borstelmann, who directs Dana-Farber's Family Connections program. "They can think, Hey, I was mad at my mom and then something bad happened—maybe I made it happen," she says. "Even older kids may still think in some way that they had something to do with the illness." If that sounds strange, consider that even adults can fall prey to similar guilt. It's part of the grieving process. "Yesterday I spoke with someone who was 55 years old and his father was dying, and he was saying he felt like it was his fault," says Elizabeth Colkin, a social worker at Montefiore Medical Center in New York. With kids, the trick is assuring them that this is not their fault—and reassuring them, again and again, as they get older.

Are you going to die? This, of course, is the hardest question to answer, and not just because it's the most emotionally racking. Often, parents simply don't know. Medical science cannot always provide a sure diagnosis one way or the other. That uncertainty is hard on kids, maybe even harder than it is on adults. Children aren't likely to believe hollow assurances that everything will definitely be fine. "That's the one message you never want to pass on," says Borstelmann. "They're going to see right through it."

When kids ask this question, they may not really be asking about their parents at all, says Hayes-Cha: "What they really want to know is who is going to take care of them." Her own daughter had trouble even mustering up the nerve to ask, she says: "She sat on the couch and said, 'Mommy, I'm scared to ask you this, I can't say it, I can't say it,' until she finally said, 'Who's going to be my mommy?' " Hayes-Cha was upset, but she wasn't surprised. She had expected the question, and she realized what her daughter needed to know. She listed all the women who would be in her daughter's life to take care of her. "We went through all her aunts and her grandmother and Angelina, the nanny, and she said, 'Oh, so Angelina could be my mommy?' And I just said, 'Yes, she could'."

That was last year. Hayes-Cha continues to face challenges. She has been through many surgeries, and cancer runs strong in her family; she must be ever vigilant. But she has a different answer to her daughter's question now: she's in remission. "I've told her that I think she'll be all grown up when I die," she says. "She might even be a mommy herself." For those like Wilson who still face a difficult prognosis, the question is tougher. But even then, there is a way to answer it. "We've just been honest and told them that nobody knows when they're going to die," Wilson says. Her point is frank and true. No matter what the future holds for Mary Lynne, her kids are going to be OK.