When Mom Has Cancer

By Interviewed by Midweek Staff
Wednesday - December 31, 2008

Dr. Thompson

Dr. Diane Thompson
Queen’s Medical Center Women’s Center medical director and Cancer Center director

Where did you receive your schooling and training?
I did my medical school training in Ohio at Wright State University and I completed my psychiatry residency at the University of Pittsburgh, where I did special training in women’s health and psychiatric oncology. After my residency, my husband and I moved here to Hawaii.

How long have you been practicing?
10 years.

What exactly is a psychiatric oncologist?
I’m a psychiatrist who specializes in dealing with cancer patients. It’s a unique specialty that is getting more recognition as we begin to focus on the overall quality of life of cancer patients. Psychiatric oncology is very different from general psychiatry. For the most part, these are patients who have never had any kind of psychiatric illness before. These are patients who are specifically dealing with changes in mood associated with their cancer diagnosis and the treatment.

What is a typical work week like for you?
My typical work week is divided between the Women’s Center and the Cancer Center. My job with cancer patients is to make sure that there are programs to support the cancer patients. One closest to my heart is the CLIMB program. This is a program for children whose parents have cancer. We also offer many other support groups and community education programs through the cancer center.

Dr.Thompson and Parent
Dr. Thompson talks with a parent

Can you talk in detail about what the CLIMB program offers?
It’s a national program (founded by The Children’s Treehouse Foundation), and CLIMB® stands for Children’s Lives Include Moments of Bravery. It is a four- to six-week support program where children meet for one evening each week. They come in with their parents. The children and their parents have a light dinner together, and after that the children leave the parents and begin the program. We give them a tour of different parts of the hospital so they can see what the chemotherapy and radiation oncology departments look like. It takes a lot of the scariness out of the equation, because their imagination of where Mom and Dad are going is often different from the reality. Then on different nights we do different types of art therapy and discuss emotions that they are experiencing. At the end of the evening, the parent and the child are able to talk about what the child did. Hopefully that will really open up the communication and they’ll just begin talking more - that’s the real goal of the program.

Are the art activities designed for each specific age group, or do all the children do the same activity?
The program is open to children ages 5-18, and the general activities are applicable to the full age range. But certainly the discussion varies. For example, the younger children might draw a Mardi Gras mask with an expression on it, which is the expression or emotion they felt when their parent was first diagnosed. It’s amazing the different emotions that children have. Teenagers might also draw something, but their picture of how they felt may be very different or more abstract. Just seeing that there are others their age going through this can be very therapeutic for them.

What are the biggest differences in working with children versus working with adults?
When we work with children, we really do work with the whole family, because when parents are faced with cancer, children are affected. It’s important that the children and the parents are on the same page, and that’s often not the case. One of the most-common questions I’ve been asked over the years is, ‘How do I talk to my children about my diagnosis?’ Or, ‘Do I tell my child that my husband has stage 4 colon cancer?’People often need help just figuring out how to process the diagnosis themselves. When children are involved, there are additional questions like, ‘How do I put it in words that my child can understand?

Is there ever a clear-cut answer to those questions, or does it vary depending on the case and the age of the child?
Children are perceptive, they know something is wrong, so hiding it can often make things worse because children tend to imagine the worst scenario.Their ideas of what happens when Mom or Dad gets chemotherapy or radiation may be very different from the reality.

What are the most-common questions you are asked by children whose parents have been diagnosed with cancer?
It can be just about any question from, ‘What is going to happen to my mom?’to ‘Is my mom’s hair ever going to grow back?’And you may wonder, why didn’t that child just ask Mom? Again, children are perceptive and they may sense that Mom may get upset or cry, and children try to avoid that. That is why the CLIMB program is so helpful, it promotes communication.

What advice do you give to parents who have infants, where they aren’t able to tell them what’s going on, especially in a terminal cancer case?
Regardless of the child’s age, this is a highly emotional issue. With the support of our multi-disciplinary team, including the social worker and psychiatrist in the cancer center, we can help patients as they face these challenges. We might ask them about information they would like to share with their child in the future, or suggest taking some time to write some stories and things that the child can look at in different times in their lives. One very special patient came to me at a point where his cancer had progressed to an end stage. He had been a really active, responsible man, and he felt awful because all of a sudden everyone had to take care of him. He felt like he was not contributing. He said, ‘I feel totally helpless, all I do is sit all day in this wheelchair.’I asked him if he has breakfast with his girls. And he said yes. Then I asked him, ‘Do you ever tell them they look pretty as they leave for school or tell them you are proud when they show you their schoolwork?’ And again he said yes. Then I told him, ‘That’s what they’re going to remember for the rest of their lives. That self-esteem that you’re giving to them now is an incredible gift, so you really are an important part of the family right now. No matter what age that the kids are, there are things we can do to help the parents and the children.

Is there a particular age that the kids take it the hardest?
It’s hard at all ages. Generally at around age 5 children really start to become aware of their parents and the fact that they can get sick. As children mature, the emotions can become more complex.

03/07/2006
Helping kids CLIMB through tough times
By DAVID SCALES , Middletown Press Correspondent

DURHAM -- Marli Roblee has to wake up a little earlier than most to commute to her job at Aetna. Her first stop is the Middlesex Hospital Cancer Center for radiation treatment to prevent her breast cancer from returning. After her diagnosis in 2003, she was unsure how much to tell her 9-year-old son Jeffrey, but a solution appeared when Roblee hosted a field trip and learned of a new outpatient program, Children's Lives Include Moments of Bravery, at the Middlesex Hospital Cancer Center, 536 Saybrook Road in Middletown.

The free, six-week program is designed to help children of parents or grandparents with cancer deal with the emotional stress the disease can cause. Parent orientation begins at the first meeting with subsequent meetings targeted toward the children. After dinner, an hour and a half of discussing a feeling they call "the emotion of the week" begins to help them understand their feelings.

"It's a learning experience for the child," Roblee said. "It's learning in the sense that it takes away the fear of the unknown. We can handle anything if we know about it,"

By using arts and crafts, the kids learn how to calm their anxiety about a family member's illness. One exercise is to make a paper box, which is called a "strongbox." On the box are pictures of things the children make to help them feel better, such as sports, music, friends, etc. After it's finished, they put inside that they put little slips of paper inside with their worries written on it. The idea behind the box is the worry slips deposited inside and the positive pictures on the outside help children literally place their fear in a box of their own strength.

"Jeffrey put in a couple of worry slips like 'I'm afraid my mom and dad are going to die,'" Roblee said. "He had my husband and I fill out worry slips, and once you put the worry slip in the box, they're not weighing on your mind. They're not weighing on you."

Roblee discovered a lump on her breast. Thinking it was a cyst, a biopsy was done. She was diagnosed with breast cancer in December 2003, and it was confirmed as malignant in January 2004.

Roblee had many questions. "How do I tell my son? How can I keep him from being afraid? I don't want to tell him too much, but how much is enough," Roblee said. "That's where CLIMB is fantastic!"

The program doesn't stop with arts and crafts; kids are also familiarized with the equipment used to treat cancer. Jeffrey was shown the room where his mother undergoes radiation treatments and was encouraged by the new weapons in the anti-cancer arsenal.

"He's asking me questions when he has concerns and it's not just this glassy-eyed look," Roblee said. "Now he understands more and we can talk about it and I'm able to reassure him that everything's going to be fine."

When not in class at John Lyman Middle School in Middlefield, exercising his love of math, Jeffrey lends a hand at home.

"I've been helping her in the house and I've been getting things she shouldn't be getting up for," Jeffrey said. "I lift things like laundry baskets. It's tough to know that my mom had cancer and now we're getting through it and it's all better."

Roblee said because of CLIMB, the lines of communication between her and Jeffrey are open wider than before. Jeffrey has begun to teach his mother how to snowboard. He also said she does pretty well on powdery snow, but tends to wipe out on icy slopes.

Wendy Peterson, is an advanced practice registered nurse, specializing in psychiatry and psycho-oncology, who runs the program. She said the goal is to help children find ways to cope with strong feelings associated with having a sick family member. Parents are also given support to help speak with their children if fears and questions arise.

"When somebody has cancer, people normally get upset," Peterson said. "It's normal for a family's life to be disrupted, it's normal for children to have feelings, and it's necessary for children to express how they feel and have age-appropriate information."

Anne Campbell-Maxwell, administrative director for the cancer center, discovered The Children's Treehouse Foundation, a nonprofit organization in Denver, Colo. Basing it on their model, CLIMB has gained some national attention. She recently returned from a national psycho-oncology meeting where the CLIMB program was introduced to a national audience with The Children's Treehouse Foundation founder, Peter van Dernoot.

The six-week pilot program finished in December, and another is beginning, and hopes are high for a continuation. Jeffrey and Marli said they would both love to come back.

Peterson remains hopeful that the program will not only be able to continue, but expand. The group will have a reunion in April.

"We're really trying to increase awareness so that more children can be referred to the program," Peterson said.

"Our ultimate goal is to increase the participation of the children and we're also developing a concurrent parent program.

"The parent program will be focused on giving parents information about what is age-appropriate information to give children because children have different cognitive abilities depending upon their age."

Roblee hopes to keep hitting the slopes and one day see Jeffery get his license, go to his prom, and one day rock her grandchildren. She is currently undergoing reconstructive surgery.

Lifeline: Help with a tough conversation
Sunday, October 29, 2006

If you're a parent who's been diagnosed with cancer, one of the toughest things you'll face is figuring out how to help your kids cope with your unsettling news.

The first thing you should NOT do is rush straight home and blurt it all out. Instead, let a few days or a week pass before you have your sit-down talk.

"This gives you time to think through what you're going to say to your children, to anticipate their questions and how you might answer them," said author Peter van Dernoot, whose "Helping Your Children Cope with Your Cancer: A Guide for Parents and Families, Second Edition" (Hatherleigh Press, $15.95) was just released to coincide with October's Breast Cancer Awareness Month.

Control is key.

Most importantly, this self-imposed grace period will allow you to get your emotions under control so that you can talk to your children in well-modulated tones and without breaking down. "If Mom says, 'I'm going to be okay and we're going to fight this,' but she's wringing her hands and crying, it's a mixed message," van Dernoot said.

Be ready in case your child asks, "Are you going to die?"

Be honest.

You need to be honest and try to focus on the positive as much as possible. "If you say, 'I'm not going to die,' and, unfortunately, a couple of years later, the parent does die, the surviving parent will be reminded by the child, 'You lied to me,'" said van Dernoot, whose late wife was diagnosed with terminal lung cancer at 45, when the couple's children were 11 and 15.

Try van Dernoot's suggested approach with your kids: "We're going to be talking to the very best doctors and oncologists we can find and we'll do everything we can to try to beat this cancer. Survival rates are extraordinarily high, now, because of new medications and treatments."

Don't forget this part: "We will be very honest with you and we will talk to you. As we know new things, we'll let you know, also."

-- Meg Nugent