When cancer strikes
mom and dad

By David J. Foster

Staff Writer

"I'd ask for a hug and she'd back off," Barbara Burpee said of her 10-year-old daughter Nichole. "This went on for two years."

Barbara pelted Nichole with empathetic questions ("Are you okay?") and probing inquiries ("Is anyone touching you?"). Nichole invariably froze.

"She'd ask over and over: `What's wrong? What's wrong? What's wrong?'" Nichole said. Emotionally drained, the young girl surrendered: Nichole was afraid she would contract mom's cervical cancer.

"She thinks because she's a girl, she's next," Barbara said. "I tell her I can't guarantee she won't ever get cancer, but I tell her it's not contagious."

While it's made Nichole more comfortable as Mom's guardian, watching over Mom requires intense diligence.

One day, Barbara headed for the stairs. Her mind, blurred by dizzying pain-killers, and her muscles, rigid from deep groin incisions, wouldn't cooperate. Burpee tumbled.

Nichole watched helplessly.

Reliving the event, Nichole stiffens as if bracing for her mom's next fall.

A parent diagnosed with cancer is deluged by fear, panic, and protracted bouts of depression.

But what about their children?

The ordeal, even with a positive conclusion, can emotionally cripple a child already wrestling the insecurities of budding adolescence.

"Children facing a life-threatening parental illness are. . . at high risk for adjustment (problems) during a cancer experience and for many years afterwards if the parent should die," noted social worker Joan Hermann, MSW, ACSW.

At the Fox Chase Cancer Center, 7701 Burholme Ave., Hermann, honored with the 1993 Leadership in Oncology Social Work Award for her pioneer research on families confronting cancer, is leading a new campaign to ease the child's distress when mom or dad is stricken with the disease.

Answer to prayer

When Brittany Madsen learned of her parent's cancer, she turned to a counselor at her Christian school. "She told me all I could do is pray. I did, and here I am," she glowed.

Brittany, like Nichole Burpee, are veterans of Hermann's ground-breaking experiment. Known as the nondescript Children's Support Group, the six-week program uses art activities to help children of parents with cancer share their hopes and fears.

It also lures kids into a controlled environment where social workers can detect adjustment problems and physicians, presented as guest speakers, can extinguish childhood myths about the affliction, treatment, and--if the topic arises-- death.

During the kids' sessions, their parents gather in a separate room to examine similar questions, vent personal problems, and share wisdom gained from experience. That's when a leader, usually a cancer veteran, emerges.

In Burpee's class, it was Gina Keegan, surreptitiously, yet affectionately, called the "lady in the wig."

That wig, Keegan concedes, is symbolic of her nagging vanity. "I'm not afraid to admit it," she said. "I'm vain."

The wig is also an important conversation-starter, which helped Gina's daughter, Colleen, 11, overcome the embarrassment many kids feel about their parent's physical transformations.

Before leading Colleen's scout troop on a camping trip, Keegan gathered the girls to discuss the hairpiece. "I wasn't going to wear that itchy thing out there," she said, "and didn't want anything to happen to it." It cost over $1,000.

Colleen dreaded the giggles and smirks.

"I took the girls straight on," Gina recalled, and met surprisingly serious questions about her illness, even the wig's comfort. Colleen's burden lifted.

In 1979, Keegan, a 24-year-old newlywed, dreamed of a home overrun with infants and toddlers. "All I wanted was to have kids. I just love children," she said. Eight months after her wedding, her doctor delivered more somber news: Gina had Hodgkin's Disease (cancer of the lymph nodes).

Though cured after a year of radiation, the treatments made child-bearing unlikely. She and husband Jim adopted their daughter. "Colleen knows she made us a family. We always celebrate the day she came to us," Gina said.

A year later, Keegan's hormones kicked in and Matthew was conceived. Gina had her family.

There was one problem.

The radiation that cleared her lymph nodes caused cancer in their breasts.

When diagnosed in 1994, the cancer had spread. It's nestled in Keegan's back and leg. Options are few. "I don't want my children's memories of me being debilitated, bald, and bedridden," Keegan said. "There is no cure now," only an extension of time, "and I want to use that to give Colleen and Matt good memories of me. I want to live long enough to raise them into their teens, so I can get all my values and morals into their little heads."

It's a message she shares with any parent willing to listen and learn. Her compatriots are usually cancer war novices who will likely rebound. "Gina is a reminder to embrace life and your kids," said a social worker.

Keegan was recently honored with a cancer survivors award largely for her dogged efforts to stand as an example.

At the youth meetings, Colleen is deceptively quiet. When she talks about loneliness, it's about her dad working out-of-state. She's silent about separating from mom.

"Don't be fooled," Gina said. "She can get very angry. She screams, she stomps," Gina said.

On this day, she expressed herself with crayons.

Reconnecting through art

Art is universal, said Janine Cwiklinski, a rehabilitative therapist at Friends Hospital, Northeast Philadelphia's oldest mental health facility. "Art is the domain of everyone. It is a place where anyone can reconnect. It is a magical space where you can play out a fantasy," where families are whole again and "what was, what won't be, but what could have been spring to life."

In the support group, some kids sketched vacations where mom and dad, now grappling with divorce, are laughing again. When the family gathered after the session, a son peppered dad with "Remember this . . . ? Remember this . . . ?"

Art circumvents "the rational, linear, logical parts of the brain," said Cwiklinski. "And death and illness are not rational."

"Within a couple art therapy sessions, Janine can give me more diagnostic information about an adolescent than I can get in two weeks," said Suzanne Reiss, MD, medical director of Child and Adolescent Services at Friends Hospital. "She gives me information about recurrent themes, ideas, a level of depression, a level of denial, even psychosis."

Art also reveals how disparately adults and children interpret crises.

"When dealing with death, young children haven't asked the existential questions. It's a fantasy-- sitting in the clouds playing a harp," said Reiss. "Adolescents ask the existential questions-- What is my purpose in the world?-- just as they are pulling away from their parents. In this case, they aren't just separating, they could be saying good- bye."

Illness also forces children to mature beyond their years. "They become caretakers," Reiss said.

"If I'm out playing and my mother is upstairs she makes me come in case my father calls," said Nichole Burpee. "I need their help lifting things," explained Barbara Burpee. "But I especially need them to behave. I can no longer referee."

Because Barbara's medication makes her groggy, the kids learned a new drill. If mom is in the shower, they stay in. If Mom is in bed, at least one must be home to answer the phone downstairs.

Barbara has fallen four times.

"I'm always amazed how these kids handle that kind of pressure," said an aide to the program.

"Sometimes I cry, and it feels good," said a 10-year-old girl. Then, recalling one of the group's speakers, she added: "The doctor said it's a release."

A friend cut in: "I'm too scared to cry. I'm afraid I'll get upset and shaky. I don't really understand it. It's hard."

The more kids know what to expect, said Reiss, the less susceptible they are to the ignorance of friends and an imagination tainted by television's exaggerations.

Embracing reality

To assist these kids, parents and other supportive adults must face certain realities:

>Kids will notice>: You won't be able to hide the crisis. They will see the tears, or overhear a conversation. They may sense your depression, or become unsettled when family routines change.

"Parents feel if they just behave normally they can protect their children from the diagnosis," said Hermann. Impossible. Little is normal in a family facing cancer, and the strength needed to keep the secret is drained by the illness.

"Children absorb the unspoken anxiety of their parents," wrote Hermann in the journal Oncology Social Work. "(They) intuitively know that something is very wrong."

Anxiety grows when they "hear something is going on, but no one is talking to them," said Reiss.

The Burpee kids can tell you how old they were when mom was diagnosed (Robert was 7, Nichole was 8). And when the hospital delays the endless series of tests, Nichole, always nearby, tenses as mom shouts at the bureaucrat bungling the schedule.

>They need the truth>: Cancer is a common chronic condition. It's not always terminal. Roughly 50 percent of patients being treated today will be long-term survivors. Advanced medical treatments and screenings are slashing death rates for testicular and colon cancer, and Hodgkin's Disease. Kids need to understand this. Many don't.

"My grandmother died of bone cancer when I was little," said an 11-year-old in the Fox Chase group. "I remember, they wouldn't let me see her. When I heard my mom had cancer, all I thought was she's going to die, and I won't be able to see her."

Yes, cancer took away Grandma, but, kids must know, treatments have improved.

Verbal dexterity is critical when speaking to young children. "Will you die?" one pre-teen daughter asked her mother. "I have no plans to," Mom replied.

When talking to young kids, Fox Chase experts suggest describing the cancer as a lump called a tumor, something that shouldn't be there.

Hermann believes: "At a minimum, children should be told the name of the disease, the part of the body affected, and how the disease will be treated."

Older children can handle the scientific approach. Tell them cancer is a collection of abnormal cells that crowd out the healthy cells the body needs.

>Express your feelings>: Don't focus solely on the illness. Talk about your feelings. Kids should know your treatment will make you irritable and melancholy, that you'll ride waves of alarm and tranquillity, and that it's okay for them to experience those emotions with you.

>Expect acting out>: One parent gave her son's teachers a schedule of her chemotherapy treatments. It was valuable information that enabled the instructors to closely observe the boy and prevent restless behavior from spiraling into hysteria.

Some kids withdraw, others erupt. Make no mistake: Children will react.

Kids beyond toilet training begin having

"accidents." Others become surly. Those with attention disorders may become downright maniacal.

These could be signs the child may not be reacting well to mom's illness, signs the child may need extra help.

Grieving has stages, Reiss said, including anger, denial, depression, and acceptance. "They need preparation; they need the chance to go through the stages."

>Involve them in your recovery>: "The trappings of hospital care are often fascinating to children, not horrifying as some adults expect," noted Hermann. "As long as (the) patient is able to communicate with (the) child, a hospital visit offers powerful reassurance that the child has not been abandoned."

You never want children to feel left out, so give your children little helpful tasks, whether at home or in the hospital.

Let the doctor instruct them, blunting any preconceived fears about radiation or chemotherapy. When they understand the healing process, they can savor the hope treatment offers, and resist feelings of abandonment.

>Reassure them>: Because children are egocentric, they need to be told they did not cause their parent's cancer, and they must reassured someone will pick them up after school and help with homework, whether its Grandma or their best friend's dad.

This can be especially difficult as the healthy parent is also grieving. "Many kids will put their grieving on hold to take care of mom who is sad, always crying, and unable to get off the couch," said Reiss.

Normalcy will eventually return. It may not resemble life before cancer-- "No family is ever the same after a cancer diagnosis," said Hermann-- but structures will form and routines will settle in.

How thoroughly the scars heal will depend on how effectively the children confront the crisis.

>To register for the Fox Chase Cancer Center support group, call Kathleen Coyne at 728-3017.>

Editor's note

Because of the delicate nature of this story, the identities of some of the children and parents have been concealed for their privacy.