John Mallory was seventeen years old. For all that was thrown at him in his daily battle to please peers, parents, and teachers, life was not so bad. Except, of course, for that lingering cough and dragged out feeling that seemed to linger. But cancer? The mere thought of it, along with the sudden coming to terms with ones' own mortality, forced his family to re-examine their lives in an effort to understand where this latest journey would take them.

Kevin Mallory and his wife Nancy live in Portland, Maine with their son John. They have been married for twenty-two years. As middle class Americans whose priorities included steering down the road to retirement and wondering how to pay for college, they were blindsided by the events this narrative hopes to put into perspective. What started out as note taking for reference when talking to doctors, soon evolved into personal comments, unfolding feelings, and eventually thoughts of writing a book.

This no-holds-barred look at family life under the gun doesn't try to break new ground; rather it chooses to examine the overwhelming issues facing an American teenage cancer patient through the eyes of his parents.

John

A Journey BackBy Kevin J. Mallory Nancy A Lane

iUniverse, Inc.

Copyright © 2009 Kevin J. Mallory and Nancy A Lane
All right reserved.
ISBN: 978-1-4401-5546-8

Contents

Dedicated to...........................................................vAcknowledgments........................................................ixForeword...............................................................xvIntroduction...........................................................xix1. The Journey Begins.................................................12. From a Physician's Point of View...................................33. Nancy and Me and Baby Makes Three..................................54. Doctor D...........................................................95. So, What Do We Tell John?..........................................116. Why Do Babies Cry?.................................................157. John...............................................................178. We Need To Talk, John..............................................199. The Little Man.....................................................2310. The Bear...........................................................2511 Grandparents and Other Assorted Family Members.....................2912 Hospitals..........................................................3113 Daycare............................................................3314 A Second Opinion...................................................3515 Of T-Ball and Worms................................................3716 Bedside Manners....................................................3917 Bobble Heads.......................................................4118 Homecoming.........................................................4519 Jelly Sandwiches...................................................4920 Odds...............................................................5121 Man's Inability to Otherwise Act Normal............................5522 Medi-Ports and Friends.............................................5923 Learning an Art....................................................6324 Chemotherapy.......................................................6525 Stupid Is as Stupid Does...........................................6726 Riding the Waves...................................................7127 New Freedoms.......................................................7328 Faith..............................................................7529 Thanksgiving.......................................................7930 Kayaks.............................................................8131 Medicinal Use Only.................................................8532 High School........................................................8733 Middle Age Put on Hold.............................................8934 Wednesdays.........................................................9135 Donuts and Fuzzy Bears.............................................9336 A Mountain in Maine................................................9537 Amanda.............................................................9938 Toy Soldiers.......................................................10139 Media Hound........................................................10340 "Are you ready for a whole day, Dad?"..............................10541 Small Victories....................................................10942 Traditions.........................................................11143 Public Servant.....................................................11344 Couch Duty.........................................................11745 A Christmas Gift...................................................121EPILOUGE...............................................................125LIST OF QUOTED AUTHORS.................................................131

Chapter One

The Journey Begins

Until the day when God shall deign to reveal the future to man, all human wisdom is summed up in these two words,-"Wait and hope." ~ Alexandre Dumas

John's journey began on October 16, 2008, when he immerged from his doctor's examination room and, in a somewhat frantic gesture for a teenager, waved for his mom to come quickly. The physician's assistant met her at the door and quickly affirmed that John did, indeed, have bronchitis. She also stated that there were other issues of more immediate concern.

John's journey would involve many people, impact many people, and leave few people who know him unaffected. It would be a journey that would provoke a newfound sense of family, friendships, and caring. The focal point would not center on our shattered comfort zone of twenty-two years, but rather what had displaced it. We had no road map, no compass to steer by. This was a world of unknowns that would come at us with breakneck speed, posing a lifetime of questions in a very short time span that was not of our choosing.

The notion that "bad things happen to good people" was squarely there for us to confront. The reality of the moment was brought home forcefully; we felt as if we had been squarely punched in the stomach, and then punched again, and again. The times would test us more than any challenge we had faced thus far. The times would test our parenting skills, our faith, and our abilities to cope with something that, until now, only happened to other people. For John, it would be a test of physical endurance and mental intrigue that would move him from one challenge to the next, willed on by his human spirit.

For all of us, the journey back had begun.

Chapter Two

From a Physician's Point of View

Fifty percent of the doctors in this country graduated in the bottom half of their classes. ~ Al McGuire

Nancy called me at work to tell me what was happening. The conversation made no sense to me whatever. She rambled on and tried to explain to me what the doctor had told her.

"From a physician's point of view, this doesn't look good," was really all I heard.

"They said they want him to go for a CT scan, a chest X-ray, and have some blood work done. They want it done today."

Her monotone delivery was not Nancy. This was Nancy in distress mode. With an unspoken agreement between us never to call work unless it was something serious, I realized this was more than serious. With the phone buzzing and the radio blaring behind me, another interruption in my day was not a welcome moment, but I knew by the tone of her voice that I should listen carefully.

"What the hell are you talking about? I thought he just had a cough?" was all I could manage.

I wanted to be anywhere but where I was. I wanted to be beside them both. I take that back, I wanted to be beside Nancy at this moment. I knew John would handle this thing the way John handles everything. I could hear him now, "How long is this going to take?"

The rest of my day was a blur.

Chapter Three

Nancy and Me and Baby Makes Three

A baby is God's opinion that the world should go on. ~ Carl Sandburg

John Lane Mallory was born May 23, 1991-our first and only child, adding to a family of two other boys from a previous marriage, both grown and out on their own. After five years of marriage, John was unexpected, but very much wanted when the news came. While we had never really talked about it a lot, I think deep down Nancy always wanted to experience being a mother.

So, here we were, two thirty somethings, steady jobs, plenty of friends, and no inkling of what to expect except for my brief experience of earlier years with my first two children who had all-too-quickly left my life with their mother at a very early age. About to embark on an adventure that would change our lives forever, we mused over and discussed often just exactly what "Nancy and me and baby makes three" would mean to us. Well, it seemed to us we could handle it. I mean, how hard could it be? We'd seen people who had no business having babies do quite well, and whose children seemed no worse for wear. How much would it change our lifestyle? We'd worked in the business world for years and had taken everything they threw at us. We had watched as, all around us, friend after friend added to their families.

Final consensus: "What the hell, let's have a baby."

Soon after, the answers to our questions were apparent.

We were both nervous and excited to see who we were bringing into the world together. The nine months were fine on me and torture on Nancy. Each day she swelled into something more and more resembling a beach ball. Getting in and out of bed was a test of endurance. Driving the car meant either laying her belly on the steering wheel or not using the foot pedals at all. No option there.

Nancy held a full-time job throughout, working as a sales representative for a major trucking company. Now understand one thing about this. She hated the job with a passion. Even dressed in your business suit and high-healed sneakers, it's hard to impress people who have as many teeth as they do fingers. She worked some of the most remote corners of the great State of Maine. She knew every wood manufacturer, and just what to pull out of the trunk of her car for their enjoyment and to garner a sale.

And now this added indignity. Waddling about the back country drumming up business was not what she wanted to be doing. But she did it-did it because we needed the added income that the package she was carrying certainly would require. And by Nancy's standards, there would be many needs.

You see, Nancy is a shopper. No, make that a world-class shopper. Shopping for her only child would be an experience that the faint of heart should avoid at all cost. She was methodical. Battle plan in hand, she would attack a store with the grit of George S. Patton and the tenacity of George Armstrong Custer. Leave no stone unturned, take no prisoners. Her child needed things. He would need lots of things. This was the thought process-nothing too good for him, and everything that other children had.

This was my wife-fat, smart, and untiring. Super Mom had made her first appearance.

What is it about childbirth anyway? You hear the old tales of women plowing the field, stopping to have a baby, and then finishing the north forty, and you think, How the hell hard can this be?

There are two things I remember not so fondly about childbirth. First and foremost, some advice: do not-and this bears repeating, do not-be tempted to hold hands with your darling wife during natural childbirth. You will not get back anything that resembles the hand you gave her.

Second, and equally important, try to remember that you are not a jerk, a jackass, or any of the other multitudes of names she will call you during this process. Delivering mothers don't mean what they say-really they don't. And it's not "your entire fault" either. What you are is the dutiful husband who is there to watch a miracle. Since you've chosen to be there while your wife is doing things that seem humanly impossible, and since she needs someplace to focus other than the ceiling tiles (remember Lamaze), who better than yourself. Let's face it, you can either suck it up or stay in the waiting room with all the other second- or third-time dads who value their hands and don't care all that much for obscene language from someone they have pledged their eternal love to.

Ours was a planned delivery. Think of that for a second. You make an appointment to go the hospital to have a baby. You know exactly when it's going to happen. No need to rush off in paint-splattered pants, or with hair leaning in every direction ... you know exactly when the blessed event will take place. What a novel idea that is: induced labor. "Come on, honey, we're running late, we have to go have the baby now."

Anyone who has never gone this particular route before has got to be saying to each other, "that's the way to go." We have a plan, we have a timetable, perfect. Call the grandparents at two, baby at two-thirty, recovery until four, first feeding at seven, and, hell, I'll be home to watch the Giants by eight at the latest.

What was it someone once said about "the best laid plans of mice and men"?

The grand plan soon gave way to the shear panic of an unplanned cesarean section. Somehow this yet-to-be-born bundle of joy had turned himself in every direction except the one needed for a smooth delivery. The fact that he was hanging on to the umbilical cord added to the dilemma.

I had witnessed the predelivery technology of the birthing room before, so the machines hooked to Nancy that were monitoring her and the baby told me all I needed to know.

Heart beat racing, cervix not opening, baby in trouble ... well, so much for natural childbirth. While Doogie Hauser and the other fresh-faced interns pondered, my mind raced as I watched Nancy on all fours doing whatever it was they asked of her.

Mustering up my best manners I asked, "Hello, um doctor, do you think this is good?"

In not too long a time, however, this pink resemblance of a child, covered with every imaginable kind of goop known to man, made his first appearance. When he'd been cleaned up a bit and handed to Nancy, we both beamed our satisfaction as the team went about doing their thing.

Then, finally, more panic. The delivery nurse, who up until that point I had barely noticed, made her presence known by proclaiming rather quietly, "Doctor, I don't like his color."

What, you didn't think I'd hear that or something? Off they whisked him, leaving us pondering another set of questions as the doctor proudly proclaimed, "Oh dear, you'll hardly see the scar at all."

Chapter Four

Doctor D

Never go to a doctor whose office plants have died. ~ Erma Bombeck

When Dr. D says something, you listen. He's that kind of doctor. On top of that, when I first looked at him, I said to myself, I hope this guy studied well, because I have a bald spot that's older than he is.

Dr. D would always make it his practice not to condemn any of the bad habits you had picked up over a lifetime. He would, however, comment to the extent that he most assuredly made his point.

I smoke, and I drink. I'm not over the top about the first, but I am passionate about red wine. Our usual conversation during my annual physical proceeds something like this:

"So, you're still smoking?" "Yes, Doctor" "How much?" "About a pack a day." "Still drinking?" "Yes, Doctor." "How much do you drink?" "Maybe a bottle or so of red wine a day." "How much did you say?!" "It keeps my cholesterol low." "That may be, but so would one glass a day." "I understand completely, Doctor."

"You also understand you're not getting any younger, and we've talked about this before. You need to start making better choices very soon."

"Thanks for pointing that out to me, Doctor. I'll see what I can do."

This was the kind of doctor I expected. Just let me make my own stupid decisions.

We would come to learn a lot more about doctors-many doctors, and very soon.

Chapter Five

So, What Do We Tell John?

The truth is the only thing worth having, and, in a civilized life, like ours, where so many risks are removed, facing it is almost the only courageous thing left to do. ~ E.V. Lucas

To me, one of the most impersonal pieces of technology ever invented is the telephone. It eliminates the elements that eye contact and body language contribute to conversation. This is bad enough when you are speaking with people you know, but it is even more limiting when you are speaking to people you don't know. In my job, I answer the incessantly ringing phone for nine hours a day, so, when I arrive home into my sanctuary, a ringing phone becomes something for someone else to deal with. It could be at arm's length and I will ignore it faithfully.

I work for the Portland Public Schools as a Transportation Director. That is to say, I have responsibility for twenty-seven yellow school buses, thirty-two employees, and, most importantly, twenty-seven hundred children whom we transport from home to school and back again each day.

I had dark brown hair with a smattering of gray when I started the job. My hair is now completely white, with a distinctive bald spot in the rear. I've done this job for over thirteen years. To say I have seen everything kids who ride school buses can dish out is an understatement. It runs the gamut from the most ridiculous to the most heart rendering to the most stressful-and everything in between. There are days when I barely have time for a bathroom break, and days when it seems as if every life problem of everyone around me falls squarely in my lap. When the end of the day comes, the feeling can best be described as satisfaction with a just a bit of relief thrown in for good measure. Getting them there and home safely again is the hallmark of any good day in the school bus transportation business.

With the end of another day and with the popping of a bottle of red, I settled in and waited for Nancy and John, who somewhat unnervingly were not home yet from his medical tests.

When the phone rang, my immediate instinct was to just ignore it and let the machine take over. For some reason, unknown to me even now, I answered it. Doctor D identified himself and, without hesitation, started in on what he had to say. Then, as if he had broken rule number one of either his Hippocratic Oath, or, at the very least, company policy, he stopped and said, "I can tell you this because I assume your John's dad?"

"Um ... yes, Doctor, this is Kevin-your patient, and John's dad."

"We have some preliminary results from the CT scan and the X-rays, and it seems we are dealing with a lymphoma as I expected. Of course, we'll have to have a biopsy to know for sure, and I've gone ahead and set that up for next week. I was hoping Nancy and John would be home sooner so we could speak and I could answer any of her questions."

"Lymphoma?"

"Yes."

The rest of the conversation was irrelevant. I don't remember if I was rude, pushy, silent, or what. I remember he talked about it being treatable, good success rates, and good doctors.

"Treatable, success rates, doctors? Whoa, whoa, wait a second."

Cancer is the only thing I could focus on. John has cancer! My seventeen-year-old son has cancer! Are you crazy? My mind raced. He went in to be checked out for a cough. It's Thursday ... the weekend is almost here. He's going to the Homecoming dance for crying out loud! This isn't happening, this is some cruel doctor joke he's using to get me to quit smoking. Every stupid, unimaginable, and horrific scenario was playing out in my mind as I half listened. As he continued to talk, I heard the back door open. Nancy and John were soon in the room, and, without hesitation I asked Dr. D, "Nancy just came in. Would you repeat to her what you just told me doctor?"

John retreated to the television, and Nancy, as is her custom when talking on the phone, started wandering around the house. She said little, an occasional "yes" or "okay" followed by what seemed interminable minutes of silence. Nancy was absorbing the same news that had been given to me minutes earlier. The world that had crumpled around me was now coming down around her.

After hanging up the phone, she returned and sat across from me. She didn't cry, and she didn't speak. She just sat there, her already pale complexion now paler and making her appear old beyond her years. We both had the same information, and we were both slowly processing it.

(Continues...)

Excerpted from Johnby Kevin J. Mallory Nancy A Lane Copyright © 2009 by Kevin J. Mallory and Nancy A Lane. Excerpted by permission.
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