FOR THE LOVE OF KYLE A young fan's duel with cancer raised Tom Clancy's rage and sense of helplessness. Reaching out hurt like hell, but he'd do it all over again.

THE BALTIMORE SUN

How do you talk about the death of a little boy?

In April of 1990, I received a piece of fan mail. There was a little boy from Long Island who was a patient at Memorial Sloan-Kettering Cancer Center in New York. His name was Kyle, and at the time he was 6. His grandfather, I learned, had read one of my books to the little guy, and Kyle enjoyed it. There was more to the letter, some subtextual things, and this one grabbed me rather hard. It gave me an address, from which I got a phone number. So I called, and asked what I might do for Kyle. At the time I had a box full of poster-size aircraft photos -- gifts from McDonnell-Douglas, the defense contractor -- and since little boys usually like pictures of fighter planes, I sent a bunch.

Chemotherapy, a form of treatment as thoroughly vile as it is vitally necessary, typically causes a child's hair to fall out. This does give the excuse to wear hats, however, and I sent a few of those as well.

Kyle suffered from Ewing's sarcoma, a fast-growing cancer that afflicts young people, starting in a bone and moving, in time, to the lungs. There are no good forms of cancer, and this sort is worse than most. I'd later learn that Kyle's personal version of cancer was mobile, virulent and unusually resistant to medical -- science. The odds never looked good, but this little guy was a fighter. He was also unusually bright, possessed of an active, questioning mind. It's a fact that children stricken with serious disease are kicked way up the learning curve. They somehow become adults very quickly, though they never quite lose a child's innocence. The result of this is both immensely sad and wonderfully charming. In any case, keeping the little guy entertained and distracted became a major diversion for me. It was like a little flag on the Rolodex. Whenever I happened to visit a new place I wondered if Kyle would like a souvenir, which would necessitate a letter explaining where I'd picked up the new gewgaw. Even so, sooner or later you run out of fresh ideas.

At that point I started calling in markers. It has been my privilege to make numerous friends in the U.S. military. These men and women have daily access to the most intricate bits of hardware known to civilized man, and kids invariably find them as interesting as I do.

The first such unit I "pinged" was the 37th Tactical Fighter Wing, the people who own and operate the F-117A stealth fighter. Little prompting was needed. People in uniform live by the warrior's code. Rule No. 1: The first duty of the strong is to protect the weak. Our people understand that. The first packet of material was followed by letters of encouragement even after the 37th deployed to fight in the Persian Gulf war. Kyle got one of the first videos of "my" movie -- "The Hunt for Red October" -- and just about memorized it. He wanted to see the USS Dallas, the submarine depicted in the story. It couldn't be just any submarine -- it had to be Dallas, but it was away on deployment, the Pentagon told me.

On the Friday before the shooting started in the Persian Gulf, a little light bulb went off in my head, the one you get that says, "Why don't you call . . . " And so I phoned up to Long Island, and learned that Kyle had just spent his first day in school in a year and a half.

Ewing's was gone, his parents told me. It was over. The little guy had lucked out and slain his particular dragon. That was some feeling. I got the word out as quickly as I could, especially to the 37th TFW in Saudi Arabia, and then I got back to work on my new book, secure in the knowledge that the good guys had won a small but important battle. Getting up to see Kyle became a matter of lower priority. Kids have more fun with other kids than they do with stuffy adults.

On a business trip in March, I called home, as usual, for messages, and the news was bad: Mr. Ewing was back. The early return after surgery, CAT scans and abusive chemotherapy was a particularly evil omen, but the people at Sloan-Kettering did not want to give up on my little friend. He was being blasted with hard gamma-radiation, and if the new growth in his leg was killed, and if the CAT scan showed no additional activity elsewhere, then Kyle would be lucky enough merely to have his left leg surgically removed, followed by another bout of chemotherapy. Otherwise . . .

The family hadn't wanted to bother me with the news for fear of interfering with my new book, and Kyle didn't want me to know because, his dad explained, I might stop liking him if I discovered he was losing a leg. Kids think that way, of course. The emotional impact of this was horrific, but there was work to be done.

The next day I established that the USS Dallas was finally back in its home port of Groton, Conn., and it seemed a good idea to get the little guy aboard while he was still largely intact. The Navy fast-tracked a visit for him. On the day after Kyle's CAT scan, the crew of the Dallas gave my little buddy what was probably the best day of his life. He bubbled about it. "I got to shoot a torpedo and look out of the periscope, and I ate everything they served for me!" he told me that night. They made him a member of the crew, and presented him with gold dolphins that he still wears. Five days later, his left leg was taken off.

The resilience of these kids is something that confounds reason. Kyle was at this point only 7 and had already been through an experience to crush the soul of any adult. He sat up on the gurney and steered himself into the operating room. Then began yet another bout of chemotherapy. When "phantom pain" from his amputated leg caused him discomfort, Kyle would say out loud, "I'm sorry, the leg you have reached is no longer in service. Please contact the right leg for further information."

Kyle's parents. It requires no great insight to note that they were living through the ultimate nightmare. Set aside the fact that they faced the death of a child. Consider for the moment only the day-to-day routine. When the child is in the hospital, you live there with him, sleeping in a chair of dubious comfort, eating whatever you might warm in the nearby microwave. Forget your job. Forget your spouse. Forget the rest of your family. Forget sleeping more than four hours at a stretch. You learn a lot of what the medics have to know, and end up as a highly skilled nurse's aide. You get to sit there and watch poisons drip into your child's bloodstream. You are the one who has to be strong for a child who occasionally get discouraged.

Every time you return to the hospital, you learn about another child -- Oh, God not her, she has the same disease that . . .. You learn to decode what the doctors and nurses tell you, searching for hope among the circumlocutions. And there's always the lingering fear that someday you will leave this place for the last time, and the wrong reason.

Oh, yeah, all this goes on for months -- if you're lucky.

But, perversely, the parents are lucky. Consider the doctors, nurses and technicians. They are bright, sharp, dedicated and so fiercely competitive as to make an NFL coach look mellow. Their personal enemy is Death himself, and they fight their nasty little war on many fronts, each one of which is the body of a human child, hairless, pale as parchment, with sunken but twinkling eyes. And these health professionals lose the battle a lot. We award medals and honors to professional soldiers who risk their lives in battle, typically in a brief span of hours. These medics put their souls at risk, and do it every day, and do you wonder then who are the most courageous people in the world?

Kyle's principal physician was Norma Wollner, director of the Pediatric Day Hospital at Sloan-Kettering. She is a woman of 60 years and pixieish proportions who started treating kids with cancer when hope was a lie. Professional soldiers would say that she has a clear sense of mission and tenacity of purpose with few parallels except in her own elite community. Norma was the blue-force commander in the war, and she fought valiantly, with consummate skill and obstinate determination.

Unfortunately, the red-force won.

I got a call one afternoon in May from Kyle's dad. The little guy was terminal. Make-A-Wish, an organization that grants wishes to dying children, was sending him to Disney World. I was unprepared for this. Probably I am too optimistic, and perhaps the family was overly careful in what they had told me. That night I had to travel to Baltimore for a college trustees meeting. I checked myself into a nice place with a nice bar and proceeded to consume a good deal of alcohol in a puerile and pointless exercise. I had to see Kyle, of course, and I cursed myself for not having taken the time sooner. Since I am something of an expert on Disney World (seven trips), I offered my services as tour guide.

Why did I go? Fear. Everything about this frightened me. I was afraid that I would lose control of myself while with my little buddy. I was afraid that we'd be alone and he would turn to me and ask the question he'd not asked his mom and dad: When am I going to die? But most of all I was afraid of living the rest of my life as someone who failed to stand up for a sick little boy.

We met in the lobby of the Contemporary Resort. Rick and Eileen hadn't told their son that I'd be there. Kyle was easy to spot, the pale little one-legged guy in the wheelchair. I strolled over and dropped my cap on Kyle's head. Rick handled the introduction, and Kyle was incredulous for an instant -- and then, his eyes lit the room like a strobe. I lifted him up for a rather ferocious hug, my heart already broken. It got immediately worse. His grandfather took me aside a moment later to say that you couldn't hug him like that -- "He has a tumor in his chest, Mr. Clancy, and it hurts him when you do that." I'd never known such horror and shame in my life.

Strangely, that didn't matter to Kyle at all. Kyle, by God, wanted to have fun, and didn't want anything as trivial as cancer to stand in his way. It was an admirably clear mission statement, and with that fixed in my mind I led the family into the Magic Kingdom.

It is good to report that the Disney people have paid systematic and expert attention to their "special" guests. We were fast-tracked into every attraction. The costumed characters, Mickey and the rest, singled the group out for priority attention.

The family stayed at Kids' Village in Kissimmee, where Make-a-Wish houses its guests. It's superbly designed and well executed for its purpose, and wonderfully supported by local businesses. Disney (and other) characters come there -- the lovely young lady who plays Snow White was particularly angelic in her attention to my little buddy -- and they often come on their own time and out of uniform to spell the parents in their duties. Walt Disney would be proud of them.

Rick and Eileen allowed me to spell them, too. I most often drew the duty of wheeling my little buddy around. It was a joy beyond words. I quickly learned that my fears on the trip down were even dumber than my usual mistakes. Kids like Kyle, sick as they might be, are more intensely alive than anything on earth. Their eyes glow brightly indeed, and when you see them smile and drink in the wonder of such a place as Disney World, you realize that what you are really seeing is life itself, the entire miracle of existence in one brilliant moment.

My little buddy was having a hard time. Every moment drugs were going into his system through a useful obscenity called a broviak, which had been inserted in his jugular vein. His thin, abused body was often weak. Eating came hard to him. But he fought back in a way that makes "courage" all too small a word, visibly pushing the discomfort aside and concentrating on the mission at hand, which was having fun.

We were already friends from our letters and conversations, but at this time and in this place, something unexpected happened. Suddenly we were not just friends anymore. As though through some form of divine magic, we were closer still. Kyle trusted me, loved me. He was my son, too.

It wasn't all easy. Every so often reality crashes back into your consciousness. This little boy is dying, Clancy. I suppose the one really surprising thing was the rage. You become ferociously protective of a stricken child. Something was killing my little buddy; even as I watched, those misbegotten cells were dividing and spreading. I'm a person who's played with the best killing machines known to man. I've driven and fired tanks, scored a "possible" with a handmade sniper rifle on a 1,000-yard range, shot pistol with the FBI.

You wish cancer really were a dragon, because if it were, you could go after it, hunt the bastard down. You lust for that chance. I know how, and what I cannot do, others of my acquaintance would leap at. All the people in uniform who'd stood up for my little buddy, the world's most effective warriors, and Clancy, the minstrel who writes about them, any of us would have risked it all for Kyle. But cancer is not that kind of enemy. You look around at the passing crowd and start hoping that someone will attack your little buddy so that you might do something to protect him. That's how crazy you get, and when you face the fact that there is not a single thing you can do to save him, all you have left is an undirected killing rage that feeds on itself. And then you step away for a moment, and swallow, and take a deep breath, staring off above the heads of a passing crowd as though looking for something. In such moments you understand what it's like to be the parent of a critically ill child.

So, you turn back, smile and ask your little buddy where he wants to go next. Because even if fate and science have failed him, you can't, not now you can't. And you put it all aside until you get back to your room, because you know when you get there you're going to come apart again.

It was only four days. I was trying to squeeze in a lifetime of friendship in a brief span of hours, doing so with a child whose frail body often twisted with pain. But we did have fun. At the "Indiana Jones Thrill Show," Kyle hopped off his wheelchair and stood on his one leg to get a better view -- swallow, deep breath, set it aside! We discussed things mundane and profound. His child's mind wanted to learn, and I dealt with his numerous

questions. We talked about the future, what Kyle would do on growing up.

A few moments stand out. Holding Kyle in my lap -- this required subterfuge since he didn't like that sissy stuff -- during the ride through Spaceship Earth. Explaining to him that the hard part about the magic fountains at Journey Through Imagination was training the water to jump repeatedly on command (I almost had him going on that). Having a few pictures taken together. The feel of his arm around my shoulder.

And then it was over. When he hugged me, he must have hurt himself. He went his way. I went mine. From there on we spoke on the phone almost every day.

I saw him again four times, all of them at Sloan-Kettering. The medics gave him one more shot of chemotherapy. What Rick and Eileen didn't tell me was that nobody had ever survived this treatment, and the last time I saw my little buddy, I drew the duty of persuading him to take on one last medication. That wasn't easy. Kyle knew how to resist argumentation, but my last card was to ask him what he would tell me if the situation were reversed. Kyle saw the logic, and took it like a man.

All it did was hurt him. It's not the sort of thing you want on your conscience. Sooner or later, "right" and "wrong" get muddled, the knowledge of the intellect isn't quite the same as the knowledge of the heart, and you wish that there were some agency to tell you that you did the right thing.

Kyle made it to his eighth birthday, had his party, and then Mr. Ewing came back to stay. His last 10 days were lost in a cloud of narcotics. In our last conversation, Kyle told me, "When I grow up, I'd like to be like you, but a doctor instead of a writer." I think I left fingerprints on the telephone.

And then he was gone, buried in his treasured USS Dallas T-shirt, a custom-made U.S. Air Force flight suit, with Navy wings of gold, and dolphins and the unit patch of the 37th TFW. His parents spent much of their time comforting me. They'd essentially given over their son to a stranger for four days, and they actually thanked me for it. Rick and Eileen had made me a part of their family, promoted me to be Kyle's backup dad, and graced me with their friendship. Most of all, I'd received the love of their son. Of all the things I've earned in life, that's the one I'll take beyond the grave.

Life offers few opportunities to do something for which you can be unequivocally proud. It's not very often you can see the person in the mirror and whisper, "Yeah, you really did that one right, pal." Maybe the price of that is the pain which defines it. What did I learn? I'm no different from the next person, certainly no more courageous, no more decent. In the 1960s, when a cousin died of cancer in his teens, I wasn't there. I've always avoided funerals, as though doing so causes their reality to vanish. Kyle's death forced me to face things I'd managed to avoid all my life, and to see things that I'd never before cared to look at.

Perhaps the worst thing that happens to the parents of such a child is that others turn away from them. The unspeakable agony this inflicts can scarcely be described, and the parents view it as a lack of feeling, a lack of caring. I think not. What happens, I think, is denial and rage. When you watch a child suffer, you must accept the fact that it could easily be your own. When you watch a child suffer, every cell of your being wants to do something to fix things, and in the understanding that all your money and skills and contacts cannot extend his life a single day, you feel singularly useless. Turning away is a defense mechanism, to protect your own feelings, to distance yourself from the rage of the parents that you have no wish to share, and from a personal impotence you have no wish to acknowledge.

My own involvement began with the arrogant certainty that luck was transferable: My just being involved with him could change things. Tom Clancy won't let a little boy die. I can put him in touch with others. I can push buttons. I can make things happen. In my blindness I failed to see that I was right after all. In this kind of war the big victories depend on physicians and their skills, but big victories are not the only sort. By turning back, you can give friendship and get friendship in return.

Kyle passed by far too quickly, but he was here, for some part of which time he was my friend. That was a victory for both of us. When you see a stricken child having fun, you are watching Death being defeated, and seeing that is a godlike feeling. When he leaves, your heart will be more broken than you ever thought possible. Mine surely was. But even that is a victory, because Kyle might have died without my knowing who and what he was. And then how poorer would I have been.

Medicine has advanced remarkably in the past century. Louis Pasteur buried half of his children, and it's too easy to forget that there are places still in the world where watching your child die is an all too normal part of life. The very success of medicine has removed from us the understanding that some of the dragons have not yet been defeated. But until they are, more kids like Kyle will suffer all the pains of hell, and some of them will not survive.

When I went up for the funeral, I took a walk with one of Kyle's nurses. I was in a wretched state. I told her that I was glad for having met and befriended the little guy, but that I'd never be able to do the same thing again. It just hurt too much. I was begging for sympathy, but instead got what I really deserved. She stopped dead in the street and looked up at me: "What about all the other kids?" Her words had the force of a blow. What would Kyle think? You're a coward after all, aren't you?

jTC There are other kids. Each of them, however ill, is alive and needful of the same things that we all need: love, friendship, conversation. Their parents need to know that they are not alone in their personal hell. Be there for them. Will it hurt? Worse than anything one can imagine. But there are compensations. You will come to know people ennobled by their suffering, and children whose sheer force of being will teach lessons you never dreamed about. You'll learn that Death is ever out there, waiting for his shot, sometimes patiently, sometimes not. But you'll also learn that life is here and now, that every moment has meaning, and that even Death cannot take from you the things that others give. You'll rediscover the truth that the love of a child is the truest gift from God, and while the price may be high, the value is higher still.

It's easy to turn away. It's even safe, because doing so is soon forgotten. Turn back anyway. There are children who need us. And along the way, you'll see what life really is.

TOM CLANCY is at work on his seventh book. He lives in Calvert County.

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