What’s Chemo, Mommy?

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?"