Nov. 20, 2005 -- When a child gets a diagnosis of cancer, the life of every member of the family changes drastically.
Dr. Carol Goodheart knows this professionally and personally. She is a psychologist practicing in Princeton, N.J., and the author of "Living with Childhood Cancer: A Practical Guide to Help Families Cope." Her family also has been touched by childhood cancer.
Goodheart spoke to ABC News about a subject that is close to her heart:
ABC NEWS: What made you want to research and write a book on this subject?
DR. CAROL GOODHEART: My granddaughter was diagnosed with cancer at the age of 9 months. And what I learned in that process is that people talk to me in a different way as a family member in the hospital than they ever spoke to me when they came to consult me in my office.
ABC NEWS: What are the first things a family goes through when they get this news?
GOODHEART: The diagnosis of cancer for any family is truly frightening. It's like an earthquake, an upheaval that happens to people. And they need to assimilate that and then say, "All right, this is the new reality. How do we go forward?"
The treatment often makes children very ill. Modern treatments for cancer are very aggressive, so they're hard to bear. They're hard for the child and they're hard for the family to watch. But as long as there is treatment, there is hope.
ABC NEWS: This kind of news comes to only a small number of families. Is anyone, therefore, ever prepared to hear it?
GOODHEART: I don't think so. When the diagnosis itself comes, it is a terrific shock. The parents are the ones who are told. And then, depending on the age of the child, the child needs to understand what's going to happen to him or her.
The initial period is a very steep learning curve. Families want to know: Where is the best place to get treatment? Can we do it near home? Will our medical insurance cover this? Should we go to the local hospital or fly to a place that specializes in treating children with cancer?
At the same time those decisions are being made, families are reorganizing their ordinary life. Which parent is going to go with the child? Who's going to take the other child to soccer practice? If both parents work, is one parent going to take a leave of absence?
So it's a period of reorganizing internally with all the feelings, externally with how the family runs, and on the outside learning a whole new medical system.
ABC NEWS: Talk more about the feelings different family members are going through.
GOODHEART: It's very important to reassure the child and their brothers and sisters that it's not their fault. It's not that they didn't eat right, didn't eat all their vegetables. It's not that one sibling teased another one and wore their resistance down. Cancer does not happen because it's someone's fault. No one caused it, and that's a very important message to give to all the children in the family.
ABC NEWS: How do parents gauge how much to include the sick child in the medical decisions?
GOODHEART: Part of how you gauge it is you're talking with the child and you're listening to what their understanding is. In other words, you're not just speaking at the child, but you're encouraging the child to express his or her feelings and thoughts and understanding.
ABC NEWS: How do parents deal with the child's fear?
GOODHEART: It's helpful if the parents can keep their own fear under control and not speculate wildly. It's important to break it down into manageable moments and manageable pieces of information; "X-rays don't hurt, but you have to lie very still. Mommy will stay with you and hold your hand."
ABC NEWS: Cancer is a fatal illness. At what level does a child understand that, and how directly should that be addressed?
GOODHEART: Cancer is not always a fatal illness. It used to be two generations ago, but cancer is treated as a chronic disease now. And people, including children, can often live for very many years with cancer. The cure rates for some kinds of childhood cancer are now very high. So it's important not to assume it's a fatal disease.
ABC NEWS: But sometimes it is. How do you approach the subject of death with a child in those cases?
GOODHEART: There is a study which found parents have no regrets if they talk to their child about death ahead of time. But they did feel some regret if they did not talk to their dying child about death.
I think the main thing is to tell a child that there will be no more pain or fear or worry. Some parents feel like they cannot tell a child, and they will ask a doctor to do it. Sometimes, children understand that animals, plants, people, all are born, all die and the living is in between. The main thing is to comfort the child because there is a lot of fear of the unknown: that they will have no more pain, no more worry and the parents and the family will be with them.
What you can promise a child is that they'll be comfortable. It's important not to promise what you can't deliver. And it's also very important to allow the child to express his or her fears, because sometimes it's a very small concrete thing that you can do something about.
Some children as young as 9 make plans. They make a little will, or they want to give certain favored possessions to a brother or sister or friend. Sometimes children worry, what will happen to my family afterward? And one of the things a family can do is to say, you will always be part of our family. We will always be a family together.
I know one family that lost a child that celebrates that child's birthday every year. They always do a special event that's fun. And the family talked about this together and made those plans with the child, because that's what the child wanted.
ABC NEWS: How should the family handle the other children?
GOODHEART: When a child is dying, depending on the age of the other children, you want to include those children in any memorial planning. The siblings also need an opportunity to express their feelings and fear. The siblings will sometimes get angry that the sick child is getting attention and then they sometimes feel guilty about it. Depending on their temperament, different siblings will have different reactions. So you might have the child who feels he or she has to be very, very good all the time. Or you might have a child who seems quite callous. And that's because they can't bear to think about it.
It's also important to remember that there's no time limit to grief when a sibling is lost. And oftentimes people process it many years later. They process it over and over again, so the way they process it at 8 or 10 or 12 may not be the way they process it when they're 25.
ABC NEWS: Are there any mistakes a family in this situation can make?
GOODHEART: I think that probably the only mistake you can make is lying to the child, and not advocating for the child.
Because children are not adults, they cannot advocate for themselves. They need the best treatment possible. If they're dying, they need the best palliative care. They need to be made comfortable. The role of a parent is to do that yourself or, if you're unable to do it, to find someone to do that.
ABC NEWS: Do families ever emerge stronger from an experience like this?
GOODHEART: Absolutely. People often say to a mother or father, I don't know how you do this, I couldn't do it. The truth is, you don't have a choice and you do it the best you can. There's no blueprint for how to go through this. Often, people not only survive, but they thrive. And that's an important message because, yes, some children die of cancer. But some children live, and the families go on.
ABC NEWS: What happened with your granddaughter?
GOODHEART: She was treated many years ago, and although she does have continuing medical problems because of the treatments, she is a healthy, active child growing up now.