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Tue July 30, 2013
Parents Grapple With Explaining Cancer To Children
Originally published on Tue July 30, 2013 5:08 pm
Jack Goodman remembers the day his mother, Julie, told the family she had colorectal cancer. He was in seventh grade.
"They just sat us down on the futon in the living room, or the couch that we had, and told us," Jack says. "But I didn't worry because I give it up to God."
His younger sister, Lena, was in fourth grade. She wasn't so easily comforted.
"I was worried. Like she was going to like, maybe die from it, because it's happened to a few people that we know."
Julie Goodman reflects on how hard it was to tell them.
"One of the most difficult parts is what I'm diagnosed with," she says, "Breast cancer gets all the attention because it's a little more glamorous than, you know, the colon." It was 2009; Julie Goodman was 43. "So then you have to talk about what that means and where it is, and you know that explanation was grody enough for them that they didn't ask a lot of questions about that either."
Good communication can ease children's fears and isolation when a parent has cancer, studies say, even up to the point of a parent's death.
Still, figuring out what to tell the kids — and when — is hard, and many parents who have cancer get little to no advice from their doctors about how to handle it.
Two hospitals in Houston, where the Goodmans live, are tackling the issue with support groups so that other parents in their situation won't have to struggle to know what to say.
It's natural for parents to want to protect their children from the bad news of a cancer diagnosis by hiding facts or keeping them vague, says Martha Aschenbrenner, a hospice counselor at MD Anderson. But she urges parents to tell their children what's happening in age-appropriate ways. Whether Mom or Dad is going to die is usually one of the first things a preteen will ask, she says.
"The wrong way to answer the question is, 'No, no, I'm not going to die.' Because you can't promise that," Aschenbrenner says.
"A better way that also invites more conversation is: 'That is not my plan. And I'm going to a hospital where they're going to give me very strong medicine, and I hope and my plan is I'm going to get better. And I'm going to tell you what happens, so you don't have to worry that I'm keeping secrets from you. I'm going to keep you informed.'"
The Susan J. Komen Houston Affiliate funds a support group at LBJ Hospital, a public hospital in the Harris Health System, with a two-year grant of $237,500. That means women with breast cancer and their children can benefit from six weeks of group sessions free of charge.
During a recent meeting of the group called Tender Drops of Love, Lindsey Leal, a child-life specialist at LBJ Hospital, explains to children that parents with cancer sometimes feel sad, but it's not the kid's job to cheer them up.
"The thing is sometimes [your parents are] going to feel bad about themselves, and they're going to feel sad, and they're going to feel angry. And sometimes you're going to feel sad, and you're going to feel angry. And is that OK?" Leal asks the group of children ages 6 to 12. One boy answers, "No, that's not helping."
But Leal counters: "It is OK. No, it's not healthy to punch a wall. It's not healthy to act on your anger. It is healthy to talk about your anger."
And as cancer progresses or retreats, parents need to keep the discussion going, therapists say.
Julie Goodman has now had six months of clean scans. Jack is 17 and Lena is 14, and they are adjusting to the diagnosis.
"And they're like 'Yay, OK, what's for dinner?' You know, moving on," Goodman says. "They may be desensitized a little bit to it now. Mom goes to the doctor, Mom comes home, she's fine."
Goodman says she still struggles with how much to tell her kids. On the one hand she wants her children to remember she's not out of danger, not yet.
But she also loves the fact that they're not worried anymore, that they don't think about it every day. Instead, they have what every parent wants for their children — that the everyday be what's for dinner, and walking the dogs, and homework and time for bed.
This piece is part of a partnership with NPR, KUHF and Kaiser Health News.
AUDIE CORNISH, HOST:
From NPR News, this is ALL THINGS CONSIDERED. I'm Audie Cornish.
A cancer diagnosis is devastating for anyone, but it can be especially fraught if you have children. What do you tell the kids and when? One study estimates that among cancer patients and survivors, almost one in five has a child under the age of 18. And yet, many of those parents get little to no advice from their doctors about how to talk to their children about illness.
Carrie Feibel of member station KUHF in Houston has this story about navigating the emotional ground of parenting with cancer.
CARRIE FEIBEL, BYLINE: Julie Goodman first realized something was wrong when she went to the bathroom and saw blood. It was not a good time. A health problem was the last thing she needed. Hurricane Ike had just struck Houston and damaged their house, then her husband lost his job. They had two kids to support, and Goodman was thinking of going back to teaching full time. So she told herself it was just stress, just something probably, hopefully normal.
JULIE GOODMAN: It's got to be normal because I've got these other issues. I can't have anything else, you know?
GOODMAN: And I'm only 43.
FEIBEL: A few months later, in early 2009, she learned she had advanced colorectal cancer.
GOODMAN: I ignored it for several months before I went and got that scan. And that was wrong on my part. And I do not - that would be my number one advice: Do not do that.
FEIBEL: After the diagnosis, Goodman decided there would be no more denial. She and her husband called a family meeting. At the time, Lena was in fourth grade and Jack was in seventh.
GOODMAN: Well, one of the most difficult parts was what I'm diagnosed with. You know, it's not a very glamorous - I often say, you know, breast cancer gets all the attention because it's a little more glamorous than, you know, the colon. So then you have to talk about what that means and where it is. And I think, you know, that explanation was, you know, grody enough for them that they didn't ask a lot of questions about that either.
FEIBEL: Jack is now 17. This summer, he's studying for his driver's license and working on becoming an Eagle Scout. But he still remembers that day.
JACK GOODMAN: They just sat us down on the futon in the living room, or the couch that we had, and told us. But I didn't worry because I give it up to God.
FEIBEL: His younger sister, Lena, wasn't so easily comforted.
LENA GOODMAN: I was just - I was worried. I thought like she was going to, like, maybe die from it because it's happened to a few people that we know.
FEIBEL: Therapists say that question - whether Mom or Dad is going to die - is usually one of the first things a preteen will ask.
MARTHA ASCHENBRENNER: The right way to answer the question - well, the wrong way to answer the question is, no, no, of course not, I'm not going to die, because you can't promise that.
FEIBEL: Martha Aschenbrenner is a hospice counselor at MD Anderson Cancer Center in Houston. She says parents can't promise they won't die, but they can promise to include their children in the treatment process every step of the way.
ASCHENBRENNER: A better way that also invites more conversation is: That is not my plan. And I'm going to a hospital where they're giving me very strong medicine. And I hope and my plan is that I'm going to get better. And I'm going to tell you what happens, so you don't have to worry that I'm keeping secrets from you. I'm going to keep you informed.
FEIBEL: Aschenbrenner says that parents don't want to scare their kids. Some tell them simply that Mommy or Daddy is sick, and keep it vague. And some don't tell them at all, a situation that can blow up later or itself become like a kind of cancer eating away at family trust.
But Aschenbrenner says children will always sense that something is wrong. She says not only should they be told, but they should be given information about the type of cancer and how treatment will work. Otherwise, young children can engage in magical thinking. They will make up their own stories about what's going on.
ASCHENBRENNER: I remember one young man telling me that he was outside playing football with his dad - his dad had bone cancer - and his dad went to reach for a pass and fell and broke his leg. And so, his dad had cancer because he was playing football with his dad. Right. So it's like this incomplete connection to connect the dots.
FEIBEL: At any one time, an estimated 2.9 million children have a parent who has or has had cancer. Dozens of studies show that many of these children experience worry and stress, but that good communication can ease their fears and isolation, even up to the point of a parent's death.
At the Lyndon B. Johnson public hospital in Houston, children of mothers with breast cancer are getting ready to paint masks. It's a support program for the whole family with breakout groups by age. While their parents talk in another room, the children listen to Lindsey Leal, a child life specialist. She explains that parents with cancer sometimes feel sad, but it's not the kid's job to cheer them up.
LINDSEY LEAL: The thing is that sometimes they're going to feel bad about themselves. And they're going to feel sad, and they're going to feel angry. And sometimes you're going to feel sad, and you're going to feel angry. And is that OK?
UNIDENTIFIED CHILD #1: No, that's not healthy.
UNIDENTIFIED CHILD #2: It's OK.
LEAL: It is OK. No, she said it's not healthy to punch a wall.
UNIDENTIFIED MAN: Or anybody.
LEAL: A wall or anybody. It's not healthy to act on your anger. It's healthy to talk about your anger.
FEIBEL: In a room next door, Laura Molina and her husband Damian talk about how they were determined to tell their kids, and right away. Molina has breast cancer. She's 38 and takes care of her three children, plus a nephew. She says she explained the diagnosis to her kids, but it didn't become real for them until they saw the effects of chemotherapy.
LAURA MOLINA: (Through Translator) So the most difficult thing for them was when they saw me without any hair. That's when I think they understood: My mom has something. My son, the oldest, he tried to be strong and not cry. And that's something we tried to handle, too, because I've known people who haven't let their families see them like that. And I didn't want that. I wanted them to understand.
FEIBEL: The organizers of the support group say many more parents are invited to join, but they refuse because that would require telling their children.
Aschenbrenner has run into the same problem even while working at one of the world's premier cancer hospitals. She admits it's possible to hide cancer, especially at first and especially from a young child. But she says it's never a good idea.
ASCHENBRENNER: And I tell you that having seen many times where children have said: My mom didn't tell me when she was first diagnosed with cancer and I was really, really mad about it. And sometimes they're able to set that anger aside and sometimes it takes years.
FEIBEL: And it takes more than just one conversation. As cancer progresses or retreats, parents need to keep the discussion going. Julie Goodman now worries she hasn't done a better job with that. After the colorectal cancer spread to her lungs, she had more surgeries and chemo. But now, she's had six months of clean scans.
GOODMAN: And, you know, whenever I come home from that, you know, we just go: Yay, Mom had clean scans. And they're like: Yay, OK, what's for dinner? You know...
GOODMAN: ...moving on. And they may be desensitized a little bit to it now. You know, Mom goes to the doctor, Mom comes home, she's fine.
FEIBEL: Here's Lena's take on the whole thing. She's now 14.
GOODMAN: We know she's all healed, like even the doctor told her she's all cleared. So we're happy about that.
GOODMAN: No. No, I never told you that.
GOODMAN: Well, remember, we talked about we go to the scans? Every three months, I go get those scans and you ask me why? Every three months, the doctor says I'm all clear, but then I have to go again for another three months.
GOODMAN: That's confusing.
GOODMAN: It is confusing.
FEIBEL: Goodman says she still struggles with how much to tell her kids. On the one hand, she wants her children to remember she's not out of danger, not yet. But she also loves the fact that they're not worried anymore, that they don't think about it every day. It's what any parent wants: that the every day be what's for dinner, and playing with the dogs and homework and time for bed.
For NPR News, I'm Carrie Feibel in Houston.
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CORNISH: This story is a collaboration of NPR, KUHF and Kaiser Health News. Transcript provided by NPR, Copyright NPR.