Cancer in the Home: A New Normal; Part One Interview with Dr. Wendy Harpham

by Erica Heilman
In 1989, Dr. Wendy Harpham was an internist with a solo practice in Dallas and the mother of three young children. In 1990, she was diagnosed with non-Hodgkin's lymphoma, a slow-growing form of cancer with no known cure. Over the next eight years, while raising three children, Dr. Harpham underwent numerous courses of treatment for her cancer. Forced to give her up practice, she began writing books for cancer patients, drawing both on her experience as a physician, and as a patient.

In her book, When a Parent Has Cancer: A Guide to Caring for Your Children, and its companion children's book, Becky and the Worry Cup, Dr. Harpham offers hard-won insight to parents and children about the challenges of living with cancer in the family. In part one of this two-part interview, she discusses the ways her family talked about cancer, and the importance of establishing a "new normal" at home.

In your view, is it ever a good idea not to tell children about cancer?
As a physician and as a parent, I realize that there are many different ways to deal with a life situation; there is no one right way to raise children. But studies have shown that even when nothing is said, children know that something is going on. If they're excluded from the crisis, they're left to their own devices to understand what's going on and find ways to cope with the changes. Included in the crisis, the parents have an opportunity to educate their children in hopeful and helpful ways and guide them toward adaptive coping skills. So for me, it was never an issue of trying to keep anything from my children.


I also wanted to use my unwanted illness to help my family grow strong. Every parent wants to teach their children skills and values. I chose to use the challenges of my illness as a platform for teaching my children what I would want to teach them if I'd never been sick a day in my life.

How do you know how much to share with a child?
The first issue is: How much does the child need to know in order to deal with his or her world? If you have a child who doesn't want to talk about it at all, you may need to force them to listen to the basic facts, such as, "Mom's sick, she's going to be in the hospital, she needs a bone marrow transplant and she's going to lose her hair." In other words, you need to tell them the basic facts that will help them understand what's going on and prepare for what's going to happen. The second issue involves what they want to know. And that's where the child moderates how much information is shared.
What are the various emotional reactions that parents can expect from children when they are told a parent has cancer?
There are a wide variety of responses, but one of the most common responses is regression. Children who were potty-trained may lose that ability for a while. Children who were going to sleep by themselves may have difficulty sleeping. Children who were feeding themselves may not be able to do that well. Children who were doing well in school may see their grades slip. Things like that.
When it's temporary, it's just an indication that the child is under stress, and may have increased needs. As long as it's temporary, it's usually not an indication of a serious problem or the need for intervention. It's when it persists that parents need to see it as a signal that the child may be having a problem that needs addressing.

How will you know if the child is doing okay?
I've found that if your child knows the basics?knows what's happening and what to expect?and if they look like they're dealing with their world and continuing to grow and develop, then they're fine. If your child is not asking very much and is not complaining, but the grades are slipping, the child is moody or not playing with friends the way he or she used to, or is no longer performing well in sports or wanting to go to practices?you have indications that this child has needs that are not being met.

I think the hardest thing about cancer has been witnessing my children's unpleasant emotions?their anger, disappointment, sadness, fear, resentment. I had to remind myself that having these emotions was normal and adaptive and healing. I also knew that giving them a safe place to express their unpleasant emotions would allow my children to move forward. In all these years, no matter what my children have felt, they have never gotten stuck. The short-term discomfort of their unpleasant emotions has helped them move forward and grow up.

In your book, When a Parent Has Cancer..., you talk about the need to establish a "new normal." What does that mean?
"Normal" is when daily life is going the way you expect. It feels comfortable and you're used to what's happening. To try to hold on to that old normal?where everybody has certain roles and certain expectations?when you're dealing with cancer is often impossible. And, it leads to frustration, confusion, disappointment, and anger. The idea of letting go of the "old normal" and adopting a "new normal" frees families to adjust to the fluctuating needs and abilities of all members of the family. I was a full-time clinician before my diagnosis. So "normal" was mommy leaving before they got up in the morning, and mommy getting home in time for dinner, and daddy making dinner. When I got sick and I needed to be home, "normal" became mommy being home. "Normal" became people delivering meals three times a week, mommy's friends coming to help care for the children, daddy doing the baths, mommy going for chemotherapy every week, and mommy being bald. "Normal" became mommy and daddy having little meetings in their bedroom. This idea of an evolving new normal freed us from the constraints of something that couldn't work.
How long did it take you to establish this new normal?
It did not happen like the flip of a switch. And even when I understood intellectually that things needed to change, emotionally it was a very hard adjustment because my diagnosis was associated with so many losses for me?the loss of my ability to work, the loss of my hair, the loss of my health, the loss of my sense of my future?to let go of other things, such as me being the primary nurturer, was very emotional and very difficult. I was resistant to it.

I remember one instance where my husband was giving my son a bath, and one of my daughters bumped into a door and started crying. At that point, my blood counts were so low I really couldn't be the one to tend to her. And it was very difficult to restrain myself and not run and take care of her but let her cry for a little bit until my husband could get my son out of the bathtub and take care of her. The thing that got me through it was reminding myself that my most important responsibility was to maximize my chance of getting well. And if not taking care of one of my children's short-term needs would help me get better, that was better for everybody, overall.

Did you ever worry that cancer would dominate your lives?
I accepted that cancer was part of my life, but I believed that it was only one part. Cancer never defined me, my children, or my family. I explained this to parents of my children's friends and to my children's teachers, and asked them, "Please, every time you see my child, please don't say, 'How's your mom?'" When they're in school, they need to escape my illness and they need to be focused on being a kid and learning and recess and their friends. And, I did not see myself as just a cancer patient. I was still a mom and I had friends and I was a writer and I was all those other things. Cancer was just one part of my life. But I had to make a conscious effort.


Were your children's perceptions of your illness different from yours?
Yes, and it really helped me to remember this. They're kids. And something that you think is a huge deal may not be a big deal to them.

After I had gone through my second round of chemotherapy, my second child was having trouble with her eyesight. Her body was changing and her eyes needed glasses, and as we were driving to the eyeglass store, she was just kind of thinking about this. And she says, "Mom, have you ever had anything serious happen to you? You know, like getting glasses?" And I couldn't believe it. I said, "Well, the cancer was kind of a drag." And she says, "Oh, yeah, I forgot about that." She had completely forgotten about it. At that point, I was doing fine, so she saw me as a usual healthy mom. I think that making the illness just part of the family really helped. The soccer games, birthday parties, homework assignments and the quibble with the girlfriend are still very important. The cancer doesn't eclipse everything.

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