As on so many other Tuesdays he can remember, Gower waits with his mom in one of the examining rooms at the children's cancer clinic. Hungry for distractions, he plea-bargains with her to fold one more paper airplane -- and then he sails it into Debbie's room next door; she's always game for a spirited chase down the hall, around and through the legs of doctors, nurses, lab technicians, parents and other young patients. Soon the doctor will give Gower his chemotherapy and the waiting will be over for another week.
But Gower senses this Tuesday is different. Someone is missing. As his mom buckles him into the back seat of their car for the return home he asks, "Is Alfredo's heart beating the same as mine?"
"At home, honey, at home," his mom says. "When I talk to you about Alfredo, I want to look you in the eyes."
Gower begins chanting Alfredo's name louder and louder. "Mama, tell me about Alfredo now . . . I can see your eyes in there," he says, pointing to the rear-view mirror. She tells him that Alfredo died quietly the afternoon before, surrounded by his mother and older sisters.
Later, before bedtime, Gower brings up Alfredo's name again and asks only one question: "He had leukemia and he died . . . I have leukemia; am I going to die?"
Diagnosed shortly before his third birthday, Gower has already learned that he, Debbie, Alfredo and all the others who visit the clinic on Tuesday have cancer. And he knows what that means.
As if equipped with unknown sensing devices, children with cancer, even toddlers, quickly figure out they are in serous trouble. They learn by noticing changes in their health, visits back to the hospital ward if they become sicker, extra attention by grandparents and friends, and sometimes by overhearing conversations and remarks not intended for them. "Believe me," a mother commented, "these kids wear radar ears and eyes."
Mostly, they understand what cancer means through the grapevine -- by being with other young patients on the hospital ward or in the outpatient clinic. When Gower is given medicine intravenously, he sees others getting the same medicine; when his hair falls out, he notices other bald heads in the room; and when he is weak, tired and needs to be hospitalized, he finds that familiar faces are there to greet him from other beds.
He has learned the cues which signal that another child has died -- whispers between parents, tears in the eyes of nurses, someone missing from Tuesday's clinic. It is when this sequence is repeated often enough and long enough that the child with cancer knowingly asks: "Am I going to die?"
Today, because of stunning improvements in medical treatment, children with cancer also are learning that the disease doesn't necessarily mean death. They are learning to live with their cancer into uncertain futures; their understanding develops, week by week, as they watch fellow patients adapt. They realize they are not alone with their pain, fears and struggle.
Henry shows Gower how to cope with medical procedures and tests. Seeing Henry's calmness and realizing he survives, despite pain, helps Gower know he can too. Diane shows Gower how, despite her disease, she lives as normal a life as possible; her visit to the clinic is just one more appointment for an active high school cheerleader.
More than 6,000 children will be diagnosed as having cancer this year, and their parents will be encouraged to be open and honest when talking about it. The first few days after Linda's diagnosis, her father remembers shying away from working the word "cancer" as he talked to her sitting by her hospital bed. "Barely able to say it to myself -- let alone to Linda -- somehow I heard myself say it out loud: 'Linda, your cancer medicine will make you strong again, and I'll always be with you.' You know what? I think she already knew. Maybe if I'd waited she would have told me."
But it isn't a matter of telling or waiting; it's learning how to listen. How do parents of cancer patients learn to hear their children's questions? They must realize that their children's need to know is as essential in helping them become well as their life-sustaining medicines. If we listen, the children will ask: 'Will I feel pain or be left alone? Am I sick because I was bad? Will I play soccer again? And I going to live with cancer or die from it?'
Questions of life and death seem outside the safe, secure boundaries of childhood. However, doctors and nurses know from experience that the children of parents who deny or try to "pretend-away" their illness face even more difficult obstacles, such as the isolation that comes from feeling no one is listening.
Gower shared his curiosity openly with his mom; he knew there were no taboo questions between them. Sometimes, though, children will act-out their worries. While skimming through the family album, Jeffery's mom discovered all the photos of hm were missing.
Who would remove them? Perhaps her husband took them to work as a way to ease some of the uncertainty caused by Jeff's cancer. But Jeff's dad knew nothing about the photos. In relapse, Jeff was home again after a lengthy stay in the hospital; cautiously watching over him, his mom followed his trail outside, remaining several yeards behind.
Near his dog's redwood house, Jeff dismantled a small cluster of rocks, stone by stone, until he uncovered a shoe box. Then he turned around, surprised to see his mother, and within moments they both were crying. All the missing photos of Jeff were neatly stacked inside the box. It was his way of making a statement about his parents' refusal to talk to him about his disease and his way of acknowledging that he might no longer be part of the family.
"We were no longer separate," his mother recalled later. "He was only 4, too young to be troubled, I thought." Now Jeff and his mother could comfort each other with the knowledge that they weren't suffering alone.
While waiting for their medicine each week, Gower, Debbie and the others presented drawing after drawing clearly showing their efforts to understand their cancer. Gigantic hospital beds with little children in them, sad faces on their parents -- these drawings of children with cancer vividly tell their story. Even with the candor Gower's mom encouraged, he relished the chance to make drawings that spoke for him.
For several weeks Gower drew monsters -- "Frankensteins," he called them. At that time Gower was gaining weight from a new drug. As soon as he was switched to a different drug and lost the extra pounds, the themes of his drawings changed.
Clearly, the most startling drawings are presented by children who realize that talking with their parents about their cancer is off-limits. When talking about their parents' uneasiness on the subject, these children may appear unconcerned or nonchalant, but in their drawings they feel safe to say what's on their minds. One father emphatically did not want his child to be told he had cancer, and once a week in clinic his child always drew his father without ears.
The beauty of learning to listen to children with cancer is that -- like their questions about sex -- we can respond to their level of interest. Linda's dad said, "I'd memorized a speech, but all she wanted was assurance I was with her."
Platelets, blood counts, remissions and relapses all become part of the vocabulary of children with cancer -- they are words we teach them. The word they teach us, if we accept the challenge of their questions, is courage. CAPTION: Illustration 1, A 4-year-old girl with leukemia drew this picture of her family's Christmas tree in the summer. She said there was an ornament on the tree for each person in her family. But there were seven people in the family, not six. She had not provided an ornament for herself -- she didn't expect to be alive at Christmas.; Illustration 2, A 4-year-old drew this picture to represent what it was like to be hospitalized with cancer the first time -- at 28 months. He was responding to chemotherapy and in remission when he drew this. The purple swirl is himself, surrounded by bottles of red blood linked to him by intravenous lines. The blue represents glucose solution. The drawing indicates that even a 2-year-old is acutely aware of a situation as traumatic as a hospital stay. After making this drawing he flooded his mother with questions about the first visit, which he previously had not mentioned.; Illustration 3, After visiting an amusement park, a 10-year-old boy was asked to draw a picture of the experience. The figures at left are his parents and he is at right. The parents had refused to discuss the child's cancer with him, and he felt isolated from them; Illustration 4, The girl who drew this picture said the flowers represented other children at the outpatient clinic that afternoon. She said the horizontal blue flower represented a very ill friend in a hospital bed nearby. She drew herself as the standing blue flower, the same color as her sick friend, saying that she was more like her sick friend than the healthier children in the clinic. Lab tests, however, indicated she was doing fine and was in remission. Within seven weeks she was as ill as the friend she had drawn in blue and she died two weeks after Christmas. She and her close friend, represented by the blue flowers, were buried side by side. The parents of the child who died first donated the adjoining gravesite for their son's friend.; Illustration 5, A 9-year-old child with leukemia drew this picture of herself and two friends at a swing set. Her friends are surrounded by yellow sunshine representing a happy, normal childhood. She is surrounded by dark clouds indicating that she is aware of her disease and of being different from other children. She drew herself wearing a sweater. Her mother was overprotective and constantly asked her daughter to wear sweaters as if they would offer an extra layer of protection. Finally the daughter insisted her mother wear a sweater too. Her mother realized that she had been creating anxiety in the child by always enforcing the difference between her and her friends.; Illustration 6, A 12-year-old boy, who knew he was dying from a malignant tumor, drew this "map" of the hospital. The yellow area along the wall is his bed; the bed room he labeled "new blood and things"; the small yellow room is the intensive care unit and the room in yellow beside it he saw as the place you go after "you're all done and died." He pictured dying as a progression from room to room.; Illustration 7, Henry, 11, had survived longer than any other child when he drew this picture. "That's me. I'm up there high, flying high and nobody can catch me," he said. The other birds, he said, represent his friends at the clinic. In a children's cancer clinic the child who survives the longest usually becomes the hope of the other children -- they think: "If he can survive that long, so can I."; Illustration 8, This drawing is by a 6-year-old boy who was losing his hair from chemotherapy treatments. He said he wasn't going to grow hair again. "You know what I'm going to have?" he said. "Those things that grow on flowers. Yeah, petals." He died five months later.; Illustration 9, This drawing by a 10-year-old girl is of a sunset. She explained: "The sun goes down and it's night-time all over again, and you can't see, but your eyes, they can stay open on their own. They'll be all alone, and it will be black. It's always black." This was her impression of what it would be like to die -- a space where she is alive, but out of contact with everyone and everything.