by Erma Bombeck
When people are hovering over you looking serious and worried, it is normal to question your future. Most of the children in this book asked "Am I gonna die?" and many of them got the answers they were looking for.
Maybe one of them was the teenager who rented you a boat last summer in Crestline, California. Maybe one of them was the married "thirtysomething" who taught your son at a school outside Chicago. Or if you dropped into a bank in Lebanon, Tennessee, perhaps the teller who took care of you was a small, pretty blond who also questioned her future. They are all survivors of cancer who discovered that when all else fails—pull out the big artillery, HOPE, and hang on!
2
"Have a Good Day"
An adult friend asked Christina what she would like for her eighth birthday. The small child, diagnosed with neuroblastoma, rubbed her hand over her bald head, then rested her face in her hands and said, "I don't know. I have two sticker books and a Cabbage Patch doll. I have everything."
Christina, age 12
Alpena, Michigan
This is a warning. If you can't handle optimism, don't go around children with cancer. If you feel tears are more appropriate than laughter, don't even think of dropping in on a camp where they are. If you don't want to put yourself at risk for feeling good about yourself, your life and the world... wear a mask!
Children of cancer are carriers of courage. There, you have been warned. Hang out with them and you will undergo a metamorphosis that you cannot control. You'll find yourself saying things like "Have a good day!" or "See you next year." I interviewed a scientist for this book and got so carried away I said, "What are you going to cure after you've found a cure for cancer?" and he replied without missing a beat, "Alzheimer's disease."
I visited a day camp in Phoenix one afternoon, and as I sat on a small chair with my knees under my chin, a small camper about three years old put his arm around my shoulder and positioned his face two inches from mine. "Do you know what?" he asked.
"What?" I answered back.
"I'm going to the circus this afternoon," he bubbled.
"That's wonderful," I gushed.
A counselor leaned over and said, "You're not going to the circus, Kenny. That's the other group. You're going swimming."
Most kids would have ripped out a sink and thrown it against the wall in disappointment. Instead, he turned to me and said with equal enthusiasm, "Do you know what?"
"What?" I asked.
"I'm going swimming this afternoon!"
Kenny would have gone to an opening of a can of tennis balls and been just as happy.
Kids with cancer seem to have a gift for cutting through the "what if," "what should've been," “what might have been," and getting right to "what is now." Bert was five years old and fighting neuroblastoma. He loved to draw. One day when he was asked, "Are you going to be an artist when you grow up?" he said indignantly, "I am an artist."
Or how about this insight from a child: "What good does it do if they cure the body but the person inside dies?"
If you don't believe optimism is contagious, there's the leukemia patient from Rhode Island, who was bumped from his flight at the airport. "But I have cancer," he said, "and would really like to get where I'm going tonight."
A man who overheard the conversation sprang from his seat in the crowd and said, "You can have my ticket, son." (As it turned out, the man didn't have a ticket either, but he meant well.)
And there was Frankie on his way home from his last day of chemotherapy in Philadelphia. He and his mother stopped at a restaurant to celebrate. The owner, noticing his baldness and guessing the rest, said the treat was on him.
Pity?A possibility. But I like to think there's a feeling that they are seeing courage face to face and want to be a part of it, no matter how small.
I was struck by the optimism of a mother from Benson, Arizona, whose three-year-old daughter, Darlene, was diagnosed as having astrocytoma, a brain stem tumor.
To a mother who was trying to raise six children alone, the diagnosis could have triggered a falling apart scenario. But the whole family swung into action to alleviate the three-year-old's fears of the dark... and radiation:
"At night, we'd wrap Darlene in a white sheet and lay her on the kitchen table. Then we'd turn on the microwave for sound, turn off the lights so it would be dark, and put the portable sewing machine lid over her head and thump it with our fingers.
"We set the timer for thirty seconds at first and if she didn't move, then each time we did this we'd do it a little longer."
She also involved Darlene's brother and sisters in her full recovery: "I'd take one of them to Darlene's appointment and we'd stay the night at Ronald McDonald House and get the child a gift, showing them Darlene was not the only precious child in our home. Sometimes we'd drive to the mountains and look for pine cones and Darlene could hold the bag. We'd take the phone off the hook, shut the curtains, and just talk and laugh or feed the ducks on the lake." Darlene started school last year.
I was dazzled by the optimism of six-year-old Ryan of New River, Arizona, who was standing in a crowd of kids at a balloon race where a raffle for toys was in progress. Ryan stood there for over an hour with his ticket held tightly between his thumb and his forefinger.
As the crowd dispersed, Ryan walked over to i he woman in charge and said quietly, "Would you call this number now?"
Jessica Hopkins of Sun Valley, Idaho, was nineteen when she was diagnosed as having leukemia. She was the number one singles player on the tennis team, and a month from graduation with a "great date" for the prom. Yet, she had something to prove. "Cancer had no place within me." Her priorities changed. "My number one goal was to get well again, not if my nails were painted. My life and the people's lives around me were completely rearranged overnight. School, tennis, and work were always first, but now I was first. I had endless hours to knit and sew, read and write, and best of all, sit and think. I viewed it as a chunk of the 'Recovery Process.'"
Today, Jessica is attending the University of Puget Sound—not your average freshman with her hat and pill jar collection and frequently bandage-covered hands, but "Who wants to be average anyway?
"I wish everyone who has cancer could benefit from it somehow," she wrote. "The saddest thing to me is when a person suffers through chemotherapy, radiation, and surgery and doesn't learn anything about themselves through the process. My cancer is a gift."
Sometimes, with these kids rattling around in an adult world of emotions, dangers, and decisions, you have to keep reminding yourself that they are children first. Inside these little bodies that house a full-blown major catastrophic disease are children fighting to get out. And children exist on a diet of optimism: The rain is always going to stop just before the Little League game begins. The lost library book will always turn up just before it is due. An Act of God will close the school when the term paper isn't finished.
Who but a child with cancer would list the following priorities?: "My three wishes are to (1) grow hair, (2) grow up, and (3) go to Boise." On the other hand, maybe the kid knows something about Boise no one else knows.
A father told a story about his daughter who lost a leg to Ewing's sarcoma. One night, very late, a young orderly came to her hospital room with a wheelchair to take her to x-ray. Her face was ashen, her eyelids at half-mast. She had her legs crossed and her one remaining foot was sticking out. The orderly put her in the wheelchair, put down the flaps, and positioned her one foot. Then he began to grope for the other one she didn't have. Finally, she looked at him and smiled. "Good luck!"
Optimism. If treated properly, it can only get better. Ask Melissa Denney. It kept her going... for eleven years.
3
Coming Home
"Mom was wheeling me in a wheelchair through Penney's at Christmas when Santa Claus came running over and said, 'Hello, little girl, what do you want for Christmas?' I said, 'I want a bicycle.'"
Melissa Denney
Watertown, Tennessee
Finally, we hit pay dirt. I was sorry the interview couldn't have taken place in Melissa's home in Lebanon a few miles out of Nashville. I told her so. People are always more relaxed, more comfortable in homelike surroundings.
Melissa smiled as she took in the university's beautiful grounds harbored under a canopy of trees. "This is my home," she said. For eleven years she and her mother had come here in search of a cure for her cancer. "All the doctors and nurses and my friends are here. They're my family. Even though I'm cured, I still come back here once a year to see them. Some of the nurses are gone, but my doctors are still here. Some things don't change."
Perhaps the most dramatic change is Melissa herself. She was ten years old when she and her mother made their first trip to the Vanderbilt campus on a crisp October morning in 1977. As she checked into the hospital for tests, she was a little girl, pale, thin, feverish, scared, and so tired she could barely put one foot in front of the other.
On this day she was the picture of health in a pair of faded jeans and a knit shirt. We were barely settled when she opened the mysterious brown sack she had with her and pulled out a huge packet of photographs. "Let's see, I had them in some kind of order," she said, "but they've gotten mixed up. This is when I was first diagnosed and this was where I lost my hair the first time."
I watched the twenty-one-year-old as she excitally extracted one picture after the other: her friends, "one normal, one bald, one swollen as big as a pig from prednisone" (a hormone that kills lymphocytes); her brother, Chuck, "He's twenty-five now and fixin' to get married"; and "Look at this. This is the only thing that got me home after I was so sick." She handed me a picture of a large cat. "Bless his heart," she mused. "The second time I went into the hospital, he ran off and grieved himself to death. He thought I was gone." Needless to say, the next picture was of a new cat called Spider.
As she shuffled through each one, it was like a childhood of flash cards: Melissa in a wheelchair... Melissa at Christmas time... Melissa with hepatitis... Melissa with a birthday cake. The young woman held in her lap her childhood that charted a course of mouth sores from medication, the inability to walk, and internal bleeding with stop-offs at depression and chemo.
As if she sensed what I was thinking, she said quietly, "These pictures are just part of my life. I mean, they made me strong just as cancer molded my life and made me strong."
But what about cheerleading and slumber parties? She was almost defensive. "They seem ridiculous to me—so silly now."
Didn't your graduation mean something special to you?
"It was just graduation day," she shrugged.
Her mother sitting nearby interrupted. "It was more special to her parents than it was to Melissa. Every day was just a miracle to us, but Melissa never thought she wasn't going to be here."
I suggested to her that there seemed to be some kind of pattern of resiliency among children regarding cancer. They face up quickly to what they've got. They don't bargain with it, set up time schedules, or sit around trying to figure out where to place the blame. They seem to say, "Okay! That's it! Let's get on with it. I've got a life to live here." Why?
"That's just a kid for ya," Melissa giggled. "They always think they got too much to do to let something like that bother 'em. Too many plans. That's just the way you are when you're a kid. You live for what's happening right now.
"I got a good one for you," she said, changing gears. "There was this girl who had to go quite often for chemo and one time she was kind of fed up, so she had some apple juice in her drawer and the nurse came in and told her to give her a urine specimen. So, the nurse went out and when she came back, she had poured a little of that apple juice in that cup and the nurse started to take it out when the girl said, 'It looks so cloudy, I think I'll filter it back through.' And she drank it! The nurse like to have had a heart attack.
"You gotta keep your attitude," she continued. "That's the big thing. I know it's a horrible situation. Especially when I relapsed. But you've got to make the best of it. When I was there [in the hospital] and I started to feel better, my attitude helped me and it helped other kids who were feeling sick."
Melissa tends to underplay the struggle. During one treatment, she lost her ability to walk and went into a wheelchair. From another medication, she got something akin to fever blisters on the inside of her mouth and down her esophagus. There were days of depression and mood swings and baths at crazy times of the day. She lost her hair twice.
With cancer behind her, Melissa's life has been on fast-forward. After having missed the entire fifth grade of school, she returned to catch up and graduate. She also started a teen support group of patients at Vanderbilt and was instrumental in bringing about the publication of a booklet on teens coping with cancer called "I'm Still Me!"
Following high school, she married a schoolmate and was divorced nearly three years later. She works as a bank teller but plans to go to Cumberland College in Lebanon to major in elementary education, following in her father's footsteps.
It's not true about faces being road maps that reflect routes of life you have traveled. Seeing Melissa and her mother, Judy, sitting there with the sun on them, it was hard to imagine a Christmas holiday nearly a decade ago when Judy Denney was driving her daughter home from the hospital. Melissa lay on the back seat of the car and never looked up or spoke a word. When they arrived home, Melissa went to her bedroom and pulled the curtains to spend the next couple of weeks in darkness and silence.
A few days before Christmas, Judy stood in the kitchen and realized her daughter had given up. "I was losing her," she said simply. "Each day she was getting a little sicker. One day I stood over the sink and said, 'God, I can't take it any longer. I've just gotta give her to you.' A short while later, Melissa called from her bedroom, 'Momma, can we go to town and look at the Christmas lights?' That was the turning point. From that moment on, she got stronger every day."
You would think that anger is a given when you're diagnosed. It would seem normal to demand an answer to "Why?" During the interview, I gave Melissa every opportunity to rail at someone for her misfortune. To doubt God's wisdom. To demand "Why?" She didn't take them:
"Cancer didn't change my life. I mean, it was just part of my childhood and the only thing it did was to make me more mature.
"They made it as good a home at Vanderbilt for me as they could. I was never angry. Confused and mixed up, yes, but never angry."
She sincerely believed this. Cancer to Melissa wasn't a rip or tear in the fabric of her existence. It was just another wrinkle. There would be more wrinkles to deal with in her life—maybe not as devastating, but they'd be important at the time. And she would survive them. She seemed to fight the obvious temptation to look back and dwell on what she had missed. Instead, she chose to look forward.
As she carefully returned the pictures to their assigned pockets, she said, "Here's one of Darth Vader and me. You know, from Star Wars? The cast visited the hospital. I thought I was in heaven. They sat around and talked to me. Things like that just bring you right out of bed, I don't care how sick you are."
I asked her if she realized how sick she was.
"The hospital gave me a little book that showed all the little cells with little faces and such that .showed me basically there was an invader of some kind... kind of like something out of Star Wars."
Star Wars. Isn't that like a kid, I thought, to come up with something so simplistic for a condition so complex. I smiled one of those superior smiles that parents smile when they have the answer to something and their kids don't. Everyone knows cancer starts with a cell... actually, it's a bad cell that... I suppose it could be wearing a Da
rth Vader hat....
I made a note to myself. "Find out what cancer is."
4
"What Have I Got?"
Emily was four and in chemotherapy. One day at the mall, she struck up a conversation with a woman who confided she had a cold. The woman then said to Emily, "How are you?" Emily responded matter-of-factly, "Oh, not so good. I have a runny nose, an owie on my foot, and a tumor."
Emily, age 4
Cincinnati, Ohio
"What have I got?"
You have cancer.
It's a disease as old as dirt. In fact, it's prehistoric. Dinosaurs had huge tumors.
What you've got, one out of every four people in this country has got or will get. In 1989, 6,600 children will be diagnosed with it.
It has been described to some children as "weeds in your garden."
A few parents have suggested the Pac-Man principle where a group of bad cells gobble up the good ones.
Grandma probably refers to it in whispers as the "Big C." (When an adult says "He's very, VERY sick," you know the second "VERY" means cancer.)
Sometimes kids come up with their own mental picture of what it is. One depicted cancer as a large wave and he was on a surfboard trying to outrun it. Another saw it as a little bug and chemo as a hungry bear with big teeth ready to have its way with it.
Then there's twelve-year-old LT of Park Ridge, Illinois, who didn't have a clue what cancer was and didn't even care. He just fed some of his chemotherapy drug, hydroxyurea, to his plants for a science project and got second place. He said he was going to try for first place next year.
Ironically, most of the children I talked with had difficulty explaining what was going on inside them. The only thing they knew for sure was that the day they were diagnosed, it was like the first day of the Guilt Olympics.