Living Scared: Can You Trust Your Doctor

By Linda Allone

This is the first thing weve done right with this kid, argued Dr. Epstein, after I challenged his decision to alter my sons course of treatment. Just listening to this world-renowned pediatric neurosurgeon admit to all the negligent care that hurt James and trapped us in the hospital for months terrified me. As Dr. Epstein rambled on about finally being on the right track with Jamess care, I wondered if Id ever get my son out of this hospital alive.

This unimaginable nightmare all began in August 1982 when my youngest son, James, was admitted to New York Cornell Hospital in Manhattan, New York. He was diagnosed and treated with radiation for a brainstem glioma (tumor). The doctors told us that James would probably die in less than a year. In 1985 James was admitted to NYU Medical Center in Manhattan, New York, for what the doctors said was a recurrence of his brain disease. James was expected to undergo one surgery to remove the tumor and return home in seven to ten days. As a result of repeated mistakes by doctors, nurses, and physical therapists, James was forced to undergo eight surgeries, including one surgery that was performed without our knowledge or consent. Nine months later, my son was discharged from NYU Medical Center, permanently injured and totally disabled. Sixteen years later we discovered that James never had a brainstem tumor.

Living Scared begins as a heart-wrenching memoir but quickly develops into a hard-hitting expos that probes indifference, complacent attitudes, reckless behavior, incompetence, eroding ethics, descending standards of practice, and widespread corruption in medicine.

Medical Negligence Is A National Crisis

Screaming newspaper headlinesdoctor operates on the wrong leg! or surgical instrument left inside patient!have become a commonplace occurrence as medical negligence spreads pervasively throughout our nation. What once was so shocking to people now hardly raises an eyebrow because allowed behavior has become accepted behavior. Sadly, we have no one to blame for this atrocity but ourselves because our society has come to accept the avoidable mistakes that occur in all hospitals as human error, and thats wrong.

An estimated 100,000 people die from hospital infections every year. Another 100,000 people die from medical negligence. Some 1.5 million people a year are injured as a result of medication mistakes. Hospitals rarely blame doctors or nurses for the medical mistakes that occur in hospitals. More often than not, hospital administrators invariably blame the system each time a patient is injured or killed as a result of a medical mistake. Disciplinary action against the doctor or nurse involved is rarely executed. An example of this: Chief Executive Sam Odle of Methodist Hospital in Indianapolis said, Whenever something like this happens [regarding a medication mix-up that killed three infants on September 23, 2006], it is not an individual responsibility; its an institutional responsibility. The truth is, human negligence is often responsible for a majority of the mistakes that occur in hospitals; but hospital administrators will never admit to this fact. Instead, they shrewdly manipulate the public and minimize public outrage by blaming the system each time a patient dies as a result of medical negligence. This strategy works very well because the system is intangible, and people dont seem to get as fired up when the system fails, as opposed to a living, breathing human who failed to do their job and was responsible for the death of a patient.

This nationwide crisis, approaching epidemic proportions, has prompted the U.S. government to issue a warning to all hospitals to clean up their act after a national survey showed that 47 percent of Americans were directly affected, or knew of someone af

• Language: English
• Publisher: Xlibris US
• Release date: Nov 28, 2007
• ISBN: 9781465334114

Linda Allone

Linda Allone is a native New Yorker and presently lives in Staten Island N.Y. She is married, the mother of three sons, and grandmother of four grandchildren. In 1982, her youngest son, James, was diagnosed with a brainstem glioma. A series of doctors mistakes, spanning twenty years, left James permanently injured and totally disabled. “LIVING SCARED,” is my first book. I was compelled to write about my experience because what I saw occurring in hospitals was wrong, unacceptable and ultimately dangerous. I hope to use what I’ve learned to help others avoid the terrible suffering my son has endured.

Book preview

Living

Scared

Can You Trust Your Doctor?

A True Story by

Linda Allone

Copyright © 2007 by Linda Allone.

All rights reserved. No part of this book may be reproduced or transmitted in

any form or by any means, electronic or mechanical, including photocopying,

recording, or by any information storage and retrieval system, without written

permission from the copyright owner.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

[e-mail]

38932

Contents

Dedication

Preface

Introduction

Chapter One

How Do You Say Good-bye

Chapter Two

You and Me Against the World

Chapter Three

Whatever Happened to Honesty?

Chapter Four

Crisis

Chapter Five

It’s a Long, Long Way Back to Yesterday

Chapter Six

A New Beginning

Chapter Seven

Truth Is a Powerful Weapon

Chapter Eight

Never-ending Courage

Chapter Nine

Shattered Faith

Chapter Ten

Creating a Safer Environment in Hospitals

Chapter Eleven

In the Pursuit of Justice

Chapter Twelve

The Ignominy Continues

Will We Ever Be Safe from the Complacency of Medicine?

Addendum

Dedication

To my son James, whose relentless courage and spirit inspired me to make a difference.

In memory of my father, James Ciaio, whose goodness was unparalleled.

In memory of Anna Liveo, whose life was prematurely taken by the doctors she trusted.

In memory of the sweet children, Wendi, Matthew, Darren, Scott, Rebecca, and Glen, whose lives sadly ended before they had begun to live. I will always remember their smiles.

All that is necessary for the triumph of evil

Is for good men to do nothing.—Edmund Burke

Preface

I was compelled to write Living Scared because what I saw occurring in hospitals throughout my son’s long illness was wrong, unacceptable, and ultimately dangerous. My horrific experience has taught me that compromised values and complacent behavior among medical professionals is the greatest contributor to patient injury, suffering, and death.

As a result of our family’s life-altering experience involving hospitals and doctors for more than two decades, I got an education I never expected. I hope to use the knowledge I’ve gained to help others avoid the terrible suffering my son has endured.

The research for Living Scared focuses on the medical mistakes and/or corruption of twenty-seven doctors practicing medicine in ten prestigious New York City hospitals including New York Cornell, Memorial Sloan-Kettering, New York University Medical Center, New York Columbia Presbyterian, the Rusk Institute of Rehabilitation Medicine, Saint Vincent’s Hospital, Methodist Hospital, Victory Memorial Hospital, Coney Island Hospital, and Staten Island University Hospital (North and South).

My story brings public awareness to these current and very important issues that threaten people’s lives.

A number of medical professionals who have read Living Scared commented:

Living Scared is riveting and deeply disturbing.—Heidi Leistner, MD, PLLC, Pediatric Pulmonology Diplomate, American Academy of Pediatrics Diplomate, American College of Chest Physicians/Clinical Associate Professor of Pediatrics, New York University School of Medicine

Living Scared is explosive, shocking, and deeply moving.—Helen Patella, RN

This book could be very valuable to the public. Living Scared’s message is important! You have captured the atmosphere of hospital intensive care units and the bonding that occurs among the family members who spend hours together, waiting for word about their critically ill loved ones . . . The ICUs have been described by patients, family members, physicians, and skilled ICU personnel as one of the most dehumanizing experience one can imagine . . . The patients who recover sufficiently to be moved to a regular hospital bed have little or no recollection of the bright lights and the constant noise from ventilators and other equipment. Those who wait are not so fortunate.—Dr. Thomas Reardon, 1999 President of the American Medical Association

Living Scared should not be ignored by anyone because today, tomorrow, next month, or next year, you or a loved one may have to enter a hospital for treatment.

Introduction

This is the first thing we’ve done right with this kid, argued Dr. Epstein, after I challenged his decision to alter my son’s course of treatment.

Just listening to this world-renowned pediatric neurosurgeon admit to all the negligent care that hurt James and trapped us in the hospital for months terrified me.

As Dr. Epstein rambled on about finally being on the right track with James’s care, I wondered if I’d ever get my son out of this hospital alive.

This unimaginable nightmare all began in August 1982 when my youngest son, James, was admitted to New York Cornell Hospital in Manhattan, New York. He was diagnosed and treated with radiation for a brainstem glioma (tumor). The doctors told us that James would probably die in less than a year.

In 1985 James was admitted to NYU Medical Center in Manhattan, New York, for what the doctors said was a recurrence of his brain disease. James was expected to undergo one surgery to remove the tumor and return home in seven to ten days. As a result of repeated mistakes by doctors, nurses, and physical therapists, James was forced to undergo eight surgeries, including one surgery that was performed without our knowledge or consent. Nine months later, my son was discharged from NYU Medical Center, permanently injured and totally disabled. Sixteen years later we discovered that James never had a brainstem tumor.

Living Scared begins as a heart-wrenching memoir but quickly develops into a hard-hitting exposé that probes indifference, complacent attitudes, reckless behavior, incompetence, eroding ethics, descending standards of practice, and widespread corruption in medicine.

Medical Negligence Is a National Crisis

Screaming newspaper headlines—doctor operates on the wrong leg! or surgical instrument left inside patient!—have become a commonplace occurrence as medical negligence spreads pervasively throughout our nation. What once was so shocking to people now hardly raises an eyebrow because allowed behavior has become accepted behavior. Sadly, we have no one to blame for this atrocity but ourselves because our society has come to accept the avoidable mistakes that occur in all hospitals as human error, and that’s wrong.

An estimated 100,000 people die from hospital infections every year.

Another 100,000 people die from medical negligence.

Some 1.5 million people a year are injured as a result of medication mistakes.

Hospitals rarely blame doctors or nurses for the medical mistakes that occur in hospitals. More often than not, hospital administrators invariably blame the system each time a patient is injured or killed as a result of a medical mistake. Disciplinary action against the doctor or nurse involved is rarely executed. An example of this: Chief Executive Sam Odle of Methodist Hospital in Indianapolis said, Whenever something like this happens [regarding a medication mix-up that killed three infants on September 23, 2006], it is not an individual responsibility; it’s an institutional responsibility.

The truth is, human negligence is often responsible for a majority of the mistakes that occur in hospitals; but hospital administrators will never admit to this fact. Instead, they shrewdly manipulate the public and minimize public outrage by blaming the system each time a patient dies as a result of medical negligence. This strategy works very well because the system is intangible, and people don’t seem to get as fired up when the system fails, as opposed to a living, breathing human who failed to do their job and was responsible for the death of a patient.

This nationwide crisis, approaching epidemic proportions, has prompted the U.S. government to issue a warning to all hospitals to clean up their act after a national survey showed that 47 percent of Americans were directly affected, or knew of someone affected by medical malpractice.

Medical negligence has become the eighth largest killer in the United States—more than the amount attributed to auto accidents, cancer, or AIDS—and costs the health-care industry $8.5 billion a year. If the health-care industry made a concerted effort to reduce the incidence of medical negligence, that 8.5 billion dollars a year could help save lives and lower medical costs for everyone.

The question is has America become so complacent that these alarming statistics do not disturb us enough to do something about the standard of care that threatens our lives each time we enter a hospital for treatment?

Living Scared’s gripping and unpredictable story reveals what really goes on inside hospitals. The reader is taken through our failing healthcare system that shamefully puts profits before patients. They’re introduced to a side of medicine rarely exposed to the general public. A reprehensible side of medicine where doctors with hidden agendas manipulate patients into treatment choices that are not in their best interest. A community where unethical doctors deceitfully cover up mistakes with lies—a practice shamefully condoned by hospital administrators, who frown upon lawsuits filed against the hospital. An institution where unscrupulous doctors deliberately use scare tactics to frighten patients into following their direction. An organization where high-profile doctors who employ press agents care more about furthering their celebrity than the health and safety of patients. An establishment where a doctor’s blind ambition can compromise judgment, using patients to learn exciting, innovative surgical techniques to perfect their skills.

Living Scared presents documented evidence regarding (1) an unscrupulous cardiologist, first profiled on national television (60 Minutes), who performed hundreds of unnecessary life-threatening surgeries for profit; and (2) a pediatric neurosurgeon who illegally performed ghost surgery without the patient’s knowledge or consent. It’s unconscionable that this surgeon proudly boasted that his brain surgery prolonged the lives of cancer-stricken children when in reality, his aggressive and often inappropriate surgery only succeeded in prolonging their suffering. The truth is that these dying children were inappropriate surgical candidates who couldn’t possibly have benefited from surgery because their diseases were so advanced.

Doctors who lie, tell half-truths, or withhold relevant medical information betray their patients’ trust. Truth by omission is still a lie, and each time a doctor withholds the truth from a patient, they deny that patient the right to make informed decisions about treatment.

Living Scared offers a comprehensive list of resources, Internet Web sites, and reference materials that patients can access to check on their doctor’s competency and track record. They will learn whether or not their doctor has ever been sued for medical malpractice, was disciplined for inappropriate conduct, had their hospital privileges revoked, was convicted of a crime, or had their license suspended or revoked.

Living Scared brings the reader into the relationships of patients and doctors, where they learn why doctors and nurses make the worst patients. Doctors and nurses often become paranoid in the management of their own care because only they know what really goes on inside hospitals. Only they are aware how dangerous an overworked, exhausted resident doctor, who’s been on duty for one hundred consecutive hours, can be to an unsuspecting patient. Only these medical professionals realize how a nurse, preoccupied by problems in her personal life, could mistakenly administer a wrong drug or lethal dose to her patient, because they see it happen every day. When doctors become patients, they take the precaution of having an advocate oversee their care in instances where their cognizance may be impaired due to anesthesia or medication.

Living Scared will have you questioning your doctor’s honesty.

Living Scared reveals secrets that doctors and nurses have shared with me. Secrets that one day would come back to haunt them.

Living Scared empowers patients; teaching them how to protect themselves from medical negligence.

Living Scared presents documented evidence about the kinds of hospital deficiencies that are responsible for endangering patients’ lives.

Living Scared is the only publication that documents medicine’s descending standards in ethics and practice from 1982 through 2007.

Living Scared offers suggestions on how patients, doctors, hospitals, state agencies, and the government can reduce the incidence of medical negligence.

Living Scared movingly portrays the profound impact that medical negligence has on families and how it changes their lives forever.

Living Scared is an inspirational story that applauds the strength and courage of a boy who never gave up, as well as the family’s relentless pursuit for the truth.

Chapter One

How Do You Say Good-bye

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James Allone age 10. A happy, healthy, adolescent before he became ill.

August 26, 1982

Leaning up against the flashing Don’t Walk sign, I waited anxiously for Peter to arrive. Noticing the Sorry Full signs outside all the area parking facilities, my husband circled the streets surrounding the hospital, in search of the rarest of all Manhattan properties—a parking space.

Time seemed to stand still as I watched my son line up his matchbox cars against the facade of a building. It seemed like only yesterday we bought James his first car, his collection now grown to more than fifty. The years since our youngest son’s birth have gone by so quickly, and now, watching him play, I was terrified of losing him. For more than a year he had suffered from frequent headaches, but the doctors didn’t know why. As I stood there thinking about all the specialists who told us, Don’t worry; he’s a healthy boy, I prayed they were right. In recent weeks, James’s headaches had progressed with the onset of petit mal seizures and double vision. I didn’t know much about medicine, but I knew enough to realize that double vision was not a good sign. One doctor who evaluated my son actually suggested that James might be looking for attention or possibly had emotional problems. I didn’t know what to believe anymore after all the tests, including a CAT scan, turned up negative results.

With the humidity rising, this morning seemed hotter than most, or could it have been my anxiety that made me perspire so. Although Dr. Peterson, a pediatric neurologist, had come highly recommended, I was frightened just thinking about what his examination might find. Wiping the perspiration from my brow, I wondered what I’d do if my youngest son did have a brain tumor. What if it’s cancerous? How would we handle it? James was only eleven years old, and the thought of my baby having a life-threatening illness was absolutely unbearable. Perhaps I’m just jumping to conclusions, letting my mind run away with me, I thought; after all, up until now, there hadn’t been any real medical evidence to indicate that our son was seriously ill.

As I stepped into the street to scout for Peter, a bus that appeared out of nowhere suddenly came to a screeching halt in front of me! My nagging thoughts shattered as I quickly jumped back onto the curb.

Minutes seemed like hours until the elevator brought us to the doctor’s third-floor office. Facing Dr. Peterson’s door, I squeezed James’s hand, trying to get up the courage to go inside. A part of me was relieved that we were finally here while another part wanted to turn around and run. Hoping for the best while fearing the worst, I turned the doorknob.

As soon as we stepped inside, James joined the other children playing with action figures on the floor. The doctor’s outer office was bright and cheery and full of stuffed animals and toys. A huge stuffed elephant with grey felt legs that were beginning to sag, sat in front of the receptionist desk. It was obvious that the elephant had endured much abuse over the years. Without words, the tired elephant seemed to cry out, Hey, kids, give me a break, as a little boy, about five years old, climbed onto his back. The old air conditioner hummed quietly, as we took a seat beside the thriving potted yucca basking in the corner window. The warmth of the sun, filtering in through the half-opened blinds, felt good across my back as I watched James magically transform a robot into a rocket.

With sweaty palms and a palpitating heart, I waited anxiously for our turn to see the doctor. I was surprised when Dr. Peterson entered the room to call his next patient; I never imagined that he’d be so tall and broad. His eyes were brown and his hair curly with little ringlets that fell softly onto his forehead. Greeting all his patients by their first names, Dr. Peterson laughed when some of the children playfully hid behind his receptionist’s desk and peeked out at him. His warmth was apparent as this gentle giant extended his arm and waited for little Joey to grab hold of his hand. Playfully grabbing hold of the doctor’s stethoscope and putting it around his neck, Joey, with his parents, followed Dr. Peterson into his office. Even though this was the first time I’d ever seen this man, I sensed his compassion; and it eased my anxiety enough to make me smile.

After what seemed like an eternity, it was our turn to see the doctor. As Dr. Peterson slid his broad muscular frame into the bulky recliner behind his desk, he smiled and introduced himself. Glancing around the room, I noticed numerous children’s drawings hanging on the walls. Tacked just a little crooked to the pressboard was a colorful drawing of a smiling little girl jumping rope, and at the bottom were big black letters that boldly stated I Love You. Beside it was a simple finger painting of a stick figure boy standing under a rainbow of yellow, red, orange and blue and the words I’m all better now, how are you? In the middle of all theses drawings was a striking picture of a little girl who had no hair, holding a bunch of colorful balloons. At the top of the picture was written These are for you, with xxx’s and ooo’s in red! Each of these pictures and drawings showed the genuine affection and appreciation these kids felt for their doctor. Just knowing how much they liked Dr. Peterson made me feel confident that I’d made the right choice in choosing him to be James’s doctor.

As nice as Dr. Peterson was, his efforts to relax me failed. Nervously, I chewed my bottom lip while trying not to forget all the questions I wanted to ask. Twirling the ends of my hair with my fingers, I became even more anxious as James’s neurological examination got under way. When Dr. Peterson asked how long my son had been experiencing petit mal seizures, I spilled out all the facts related to James’s past medical history faster than the doctor could digest it.

Slow down, Momma, Dr. Peterson said while gently patting my arm.

He listened intently as I told him about James’s recurring headaches as well as the recent development of double vision. With my emotions getting the best of me, I began to cry, expressing my fear that there might be something seriously wrong with James. As Dr. Peterson listened to every detail of James’s symptoms, I looked into his eyes for any expression that might give me a hint of what he was thinking. As he put James through each exercise, I could see the concern in his face, especially when my son was unable to walk a straight line. When James lost his balance and fell to one side, the doctor gently said, That’s okay, James, you’ll do it next time.

Suddenly, I regretted coming to see this doctor; I sensed he was going to tell me things I didn’t want to hear.

When the examination was completed, Dr. Peterson instructed us to go across the street to New York Cornell Hospital for a CAT scan. The doctor explained that the scan would be taken with contrast dye so the picture would be sharper and exhibit greater detail of James’s brainstem. As we prepared to leave his office, Dr. Peterson placed his hand on my shoulder and said, Don’t worry.

Looking back at the taut expression on his face, I knew that he was just being kind.

At the hospital I kissed James and jokingly told him to smile for the camera as they wheeled him into the CAT scan room.

Turning around, James shouted, Don’t worry, Mom, maybe they’ll find that I don’t have a brain at all.

My son was doing exactly what I was doing, hiding his true feelings so I wouldn’t become upset. I laughed just as he expected I would.

When my husband arrived, we were escorted to a small storage room filled with metal file cabinets and were told to wait. My heart pounded as we sat there squeezing each other’s hand. As the clock ticked away the minutes, I stared at our reflection in the metal cabinet. I saw two terrified adults who were expected to take control of whatever situation confronted them, but I doubted that we could. Would we be able to deal with the loss of our son if it turned out that James had a terminal illness? This possibility was so frightening; I began to tremble. Hard as I tried to push these morbid thoughts out of my mind, they would not leave me.

When the door finally creaked open and I saw the grim look on Dr. Peterson’s face, absolute terror gripped my heart. His voice was strong and filled with compassion when he said, I’m sorry, but I’m afraid that your worst fears are not unfounded.

I must have been in a state of shock because it took several minutes before I could comprehend what he meant. The words inoperable and terminal echoed inside my head, as the doctor told us that the only treatment for a brainstem glioma (tumor) was radiation. Standing just ten feet in front of us, Dr. Peterson’s voice fluctuated in and out, as he explained that there was no cure and that only a very small percent of children suffering from this disease respond to treatment.

Refusing to believe what he was saying, I jumped up and boldly shouted, Are you trying to tell us that our son is going to die?

Without a moment’s hesitation, Dr. Peterson said, Yes.

Stunned, my body went limp. Stumbling backward, I grabbed the file cabinet for support. How long? I mumbled in a voice barely audible.

Bowing his head, the doctor said, About a year, possibly two, if James responds to treatment.

A year! Only a year, I moaned in absolute agony, never imagining that I’d even have the courage to ask this terrifying question. But a year goes by so quickly, I thought. What would I do without my James in just one year from now?

That isn’t enough time; we need more time, I cried. The horror of this unimaginable situation was hitting me faster than I could absorb. I wanted the doctor to slow down so I could catch my breath and grasp the enormity of this horrendous threat. As Dr. Peterson went on to say that this deadly tumor manifests itself in children approaching puberty, I thought I would die!

I didn’t want to hear any more. I didn’t want to know all the gruesome details. No, no, stop talking! I thought, as the doctor promised that the end would be easy for James. I wanted to run up to him and pound on his chest. No, you can’t tell me my son is going to die, that I’m never going to see him grow up, it can’t be true! I wanted to beat him senseless until he said it was all a lie, but all I could do was sit there, paralyzed with fear. His words were so painful it couldn’t have hurt worse if he had plunged a knife deep into my heart. Over and over again, I repeated, This can’t be happening, as a crushing pain in the pit of my stomach took away my breath.

But James is such a good boy. It’s not fair; he doesn’t deserve this, I pleaded.

Trying to find the right words to comfort us, Dr. Peterson said, I know how difficult it is to accept losing someone you love, but there’s nothing we can do.

Peter sat motionless, staring at the floor as the doctor told us he was going to admit James into the hospital for further testing. Numb, I buried my face into my hands and sobbed uncontrollably. Apologizing for being the bearer of this devastating news, Dr. Peterson told us that as soon as we regained our composure, we could pick up James in a room just down the hallway.

As the metal door slammed behind the doctor and he left us alone in that tiny cluttered room, we sat frozen in our seats. For several minutes we didn’t say a word. I tried desperately not to succumb to the panic that overwhelmed me. Still, something inside told me to run, to hide from the lingering terror of his devastating words.

Clinging to my husband, I cried, Oh my God, this can’t be happening; what are we going to do? Pressing me close, Peter calmly assured me that nothing was going to happen to James, as if he had never heard a single word the doctor said. As my husband repeated this to me again and again, I realized that he wasn’t just saying this to calm me. Peter was saying this because Dr. Peterson’s diagnosis was just too terrifying for him to accept. This kind of denial was not uncommon for my husband. Whenever he was faced with a serious problem that evoked deep feelings, Peter would shut down his emotions, ignore what was troubling him, and hope that it would all magically go away.

My husband sounded so confident, so convincing, but when I looked into his eyes I saw the fear. I always believed that I was so strong, but the reality that I didn’t have the courage to face life without James was sobering. As my body trembled, Peter’s grasp grew tighter, for only he knew that I was truly falling apart. Both of us wanted to block out everything that happened and take James home, but we knew it was impossible. In an instant our lives had changed, and we were powerless to do anything. Preparing to leave that little room, where destiny had altered our lives forever, a flood of memories filled my head.

How could I possibly accept losing this child? He was my baby—a bright, fun-loving, free-spirited boy, whose wonderful and irreverent wit kept us between hysteria and heartburn. Born with the spark of a Fourth of July rocket ready to soar, no challenge was ever too great for James. Inherently, he realized that no goal in life was unreachable if he wanted it badly enough. With high self-esteem, James printed #1 across his books and sweatshirts because he was that confident of whom he was. Imaginative and unpredictable, with all his tomorrows too far away, he dreamed of one day becoming an entertainer. Playfully, he drove the dogs crazy but loved them the most. Sensitive and loving, James worried if the neighborhood squirrels had stored away enough food for winter so they wouldn’t go hungry. He got excited whenever his pockets bulged with treasures (rocks, string, bolts, and springs) that only he was lucky enough to find. A child so full of life, he appreciated the rainy days as much as the sunny days. He’d whisper, I love you, Mom, almost as often as he shouted, I’m starving, when do we eat? How could I let go of these wonderful qualities in a child so precious he lights up my life?

As we made our way down the hospital corridor to pick up James, I struggled with an overwhelming impulse to grab every stranger I passed. Help me, my baby’s going to die, I wanted to cry out, believing that everyone had to feel my terrible suffering. Standing in front of James’s room, with only seconds to get my happy act together, I wiped away my tears and took a deep breath before turning the doorknob.

With a smile on his face, my son asked, Are we done, Mom? Can we go home now?

With every ounce of courage I could muster, I answered calmly, Not quite, sweetie, Dr. Peterson wants to admit you into the hospital for a few more tests. Just looking at my son and knowing what the future held was absolute torture.

Surprisingly, James responded, Will I get a TV and one of those cool beds that go up and down? Relieved that he was actually excited about staying in the hospital helped me control my emotions. His face was so innocent, so unsuspecting.

Looking out the hospital window at the East River below, James counted the passing boats. Standing behind him I ran my fingers through his hair, silently praying for this nightmare to end. Please, God, I’ll do anything, but don’t let my son die. As I stood there bargaining with the Lord, James suddenly grabbed hold of my hand.

Turning around and looking up at me, he whispered, Don’t worry, Mom, I’m gonna be okay. It was obvious that I hadn’t done a very good job of hiding my feelings if James felt the need to reassure me. Little did I know then that this child would be the source of my strength from that day on.

Holding tightly on to James’s hand, I walked around in a fog, as we made our way to the hospital’s admitting office. Going through the motions, I filled out the required insurance forms without realizing that I had even done it. As we sat there waiting for James’s assigned room number, I remembered my family at home and realized that my parents must’ve been on pins and needles waiting to hear from me. I knew I couldn’t give them this devastating news over the telephone and decided to drive back to Brooklyn while Peter accompanied James to his room.

I walked through the streets of Manhattan in a daze, trying to remember where Peter said he had parked the car. Every street looked the same as I walked up and down the blocks, searching. The people passing me talked and laughed as they went about their usual business. I wondered how they could be so happy when my world had totally collapsed. How could they treat today like it was any other day, when my baby is going to die?

Suddenly, a man on the street stopped to ask me the time. Looking at my watch, I was startled when I told him it was almost four. We had arrived at the doctor’s office this morning, and now, evening was approaching. Time had moved forward, just as it always did, even though our lives had come to a crashing halt. A sudden awareness that no matter what happens in our personal lives, life goes on, made me feel insignificant. I desperately needed some kind of assurance that things weren’t as hopeless as they seemed. Looking up at the skyscrapers that shadowed me, I prayed for God to appear out of the clouds and cradle me in his arms.

Resting on the steps of a church, I thought about the irony of my life. Throughout my entire married life, I was always afraid that something horrible had to be around the corner because my life was just a little too perfect. No one could’ve been happier than I. I had it all—a wonderful husband; three beautiful, healthy, happy children; and a home of our own. While I never believed that something this awful could ever happen, another part of me was always expecting that it would.

Driving home, all I thought about was life without James. Recalling the day my son was born and the entertaining way my obstetrician had chosen to tell me that I’d given birth to a third son made me smile. After delivering James, my doctor began humming the theme song from the popular TV show My Three Sons.

With my thoughts drifting back to James’s birth, I wondered, how does a parent watch her child suffer and die? How do you say good-bye to someone who is part of you, someone you love more than life itself? My children were the center of my world, and I wasn’t about to surrender James.

Blaring horns suddenly brought me back to reality as I pulled to the side of the road to avoid an accident. I sat there crying, with a thousand thoughts scrambling my brain, trying to come to terms with the horror of our situation. How would I break the news to my family? Should I delay the truth, saying that James’s condition was treatable, so the shock wouldn’t be so great? Would this approach give my parents sufficient time to adjust to the terrible inevitability, or would it be kinder if they learned the truth now?

As I walked into my mom’s kitchen, all eyes focused on me.

My mother asked, Where’s James? Not knowing how to begin or what to say, I just stood there and burst into tears. My sisters went hysterical when I told them James was terminally ill. My mom refused to believe any of it was true.

Dad, trying to be the strong one, held me tight and whispered, Don’t be afraid, we’ll get you through this, which made me cry even more. I knew that I had to get away from there because if I allowed my emotions to take control so early on, I would never survive this horrific day. I had to be strong and get myself together if I expected to drive back to the hospital. Realizing how difficult this had to be for my family—dropping this bombshell on them and then leaving them alone to deal with it—made me feel terribly guilty.

At home, I packed my clothes as fast as I could. Taking a few moments to pray in front of the Blessed Mother’s statue on my dresser, I placed my tattered prayer book into my bag, knowing I would never get through this ordeal without the support of the Lord. On my way out, I passed the old schoolhouse clock hanging on my dining room wall. Stopping to look at all the smiling family photos surrounding the clock, I wondered if we’d ever smile again if we lost James.

After several days of testing, I clung to the hope that the doctors had made a mistake and that James didn’t actually have this terrible disease after all. My wish was almost realized when Dr. Peterson, our neurologist, told us that the radiologist and the neurosurgeon were in absolute disagreement about the nature of the lesion inside James’s brainstem. After examining all the test results, the radiologist had come to the conclusion that my son was suffering from an AVM (arteriovenous malformation), which was a cluster of abnormal blood vessels, while the neurosurgeon suspected the lesion was a glioma (tumor).

Dr. Peterson said, You should realize Mrs. Allone, there is a significant difference between the diagnosis of an AVM and that of a glioma. While there is some risk of hemorrhage related to the treatment and cure of an AVM, there is no effective treatment to cure a brainstem glioma! The doctor explained that the brainstem—which regulates heart rate, blood pressure, and breathing—is less than two inches wide and that the presence of a growing tumor, whether it be benign or malignant, would result in death.

Since a diagnosis of an AVM was certainly more favorable than a glioma, hope remained alive. Realizing how unsophisticated we were about medicine, Peter and I relied on the doctors to come to the right conclusions.

We didn’t know whether to be excited or frightened by the doctor’s decision to surgically explore James’s brainstem, so we prayed as they prepared James for surgery. Dr. Peterson made it clear that if the surgeon was able to get a biopsy, the operation would take about four hours, but if the lesion turned out to be inaccessible, the surgery would be over in less than an hour.

Our entire family waited in the hospital’s visitor area while Peter and I nervously paced the corridor. Every second was torture, but I was more than willing to endure this agony for hours if it would give James the chance to live.

About an hour later, I saw the doctors walking up the corridor, and burst into tears. All hope was lost. Dr. Fraser, James’ neurosurgeon, told us that the tumor was not accessible and that he would treat James with radiation therapy to reduce the tumor’s size. We understood that the radiation was only a temporary treatment, assuming, of course, that James would respond to therapy.

New York Hospital’s pediatric ward was a dark and dismal place. From the very beginning, I sensed that this experience would be a test of endurance for us all when James began vomiting several times a day. The doctors assured us that this was a common reaction, resulting from the agitated state of James’s brain after surgery.

As the days passed, we settled into our daily routine at the hospital, eating all our meals in the cafeteria and sleeping on cots provided by the hospital. Peter used all his vacation time to be with me, as I was physically and emotionally drained. It was so difficult pretending that nothing was wrong so our son wouldn’t suspect that he was dying. Doing my best to be cheerful and encouraging, I planned a family vacation to Disney World after James’s release from the hospital. I needed something joyful to focus on so I wouldn’t go out of my mind. The days went by very slowly as my son recuperated from surgery. The doctors told us that James couldn’t begin his radiation therapy until the incision on his head was completely healed. Sitting at James’s bedside with nothing to do but think about the life we’d left behind, I convinced myself that our situation would get better. Flashbacks of our happy life together filled my mind each time I held my son close. The nights were worse than the days, as terrible nightmares woke me with a startling jolt. In one of my disturbing dreams, I saw myself sitting in the first row at James’s wake, as macabre visions of coffins spun around my head. Waking in a cold sweat, I stayed up the rest of the night, fearing most that my terrible nightmare was really a premonition.

In spite of my own family’s troubles, I was acutely aware that there were others around us who were also suffering. Directly across the room from my son’s bed lay a fourteen-year-old boy who looked more like a ten-year-old than a teenager. Small in stature with deep-set eyes and a crooked smile, Glen called me ma’am when we were introduced. It was obvious, looking at this emaciated child, that he was seriously ill. All the medical personnel involved in Glen’s care wore sterile gloves and took the precaution of washing their hands before and after treating him. The nurses told us that he was suffering from immune deficiency syndrome (IDS), an immune system disease that restricted his exposure to others. They warned us to limit contact with Glen, and to be sure and wear sterile gloves if we did touch him because he had no defense against germs.

No one ever came to visit Glen. Wondering if he was orphaned, I tried to get closer to this boy, who had nothing to do all day every day but watch us and the loving attention we gave James. Withdrawn and extremely guarded about revealing any details of his home life, it was difficult to get Glen to open up and talk about himself. It took several days before he warmed up to us and revealed that he had a large family that included nine brothers and sisters.

Glen’s dark eyes would follow us around the room as family and friends gathered around James’s bed, cheering him up, while Glen sat alone in his bed. James received gifts of candy and toys, while Glen received no gifts. Looking at all my son’s gifts piled high in the corner of the room, I asked James if he wouldn’t mind sharing them with his roommate. True to his generous nature, James thought this was a wonderful idea.

Glen should have something to keep him busy until his family can come and visit him, James said while choosing which gifts he would give away. Although initially Glen got very excited about the presents we had given him, the toys really couldn’t make up for his terrible loneliness. Sometimes at night, I’d hear Glen cry for his mother. With his head buried beneath the covers to muffle the sounds of his sobs, he’d moan Momma again and again. Each time I tried to comfort him, he would push me away, not wanting to be pitied because he had been abandoned by his parents. With every tear Glen shed, I cried too, unable to understand how any parent could abandon a sick child.

A couple of times a week, the hospital social worker would stop by to spend time with Glen, playing board games and making him laugh. After a while, we all made a conscious effort to include Glen in our daily activities. I helped him with his meals, and Peter never forgot to bring him a chocolate ice-cream cone whenever he went to the cafeteria. Occasionally, from the corner of my eye, I’d catch Glen watching whenever I hugged or kissed James. His eyes never left us as I held my son close. Glen’s longing for physical contact and affection was evident in how he always found a way to touch me whenever I was close to him. He’d put his hand on mine when I cut up his food or handed him something. He would ask for help in doing things that didn’t require my assistance, just so he could get close to me.

Sometimes late at night, I’d stand at the foot of Glen’s bed and watch him sleep. Looking at this pathetic child, I thought about how unfair life is. There are some people who happily go through life untouched by pain and suffering while others are born to suffer. Their young lives end tragically without ever experiencing the joy of life. Who decides what our fate will be?

One day after the social worker had spent some time with Glen, I pulled her aside to inquire about his family. She knew that I wasn’t just being nosy, realizing Peter and I were genuinely concerned about his welfare. She told us that Glen was terminally ill and had been sick most of his life, often spending months in the hospital to treat his disease. Becoming emotional, she said that Glen had been confined to this particular hospital for the last three months and didn’t have much longer to live. Deeply saddened by what she shared with me, I immediately asked why I hadn’t seen Glen’s family visit.

His mother lives in New Jersey and has a very large family to take care of, she said, defending Glen’s mother.

Interrupting her, I snapped, That’s no excuse for a parent to abandon their child, especially a child who is dying.

Grabbing my arm, she responded sharply, Don’t be too quick to judge Glen’s family, Mrs. Allone; after all, you have to realize he’s been sick for a very long time, and after a while, in order to survive yourself, sometimes you have to let go.

I couldn’t believe that she was rationalizing the abandonment of this child. I asked myself over and over, how could a mother set a limit on the love and time she gives to her sick child? At what point does a loving, caring mother decide, okay, I’ve given this child enough of my time and energy and walks away from him.

Shaking my head in disbelief, I said, I guess I’ll never understand this kind of reasoning.

With that, the social worker replied, Let’s just hope you won’t ever have to!

Walking away, I still found it difficult to believe, or even imagine, that a terminally ill child would have to endure his terrible suffering alone.

Glen died about a month after James was released from the hospital. My husband and I attended the services held at a chapel near the hospital. For the first time, we met his family. They graciously came over and thanked us for our kindness toward Glen, which they had learned about from the social worker. The family did not offer any explanation as to why they never visited. After extending our sincere condolences for their terrible loss, we took a seat in the rear of the chapel. Sitting there, I watched Glen’s mother sob softly into a handkerchief. She appeared as devastated as any parent who had lost a child would be; still, I could not fathom why that little boy was left alone as he approached death.

During James’s hospitalization, Dr. Peterson always took the time to explain to my son about the tests he would be undergoing so he wouldn’t be frightened by these procedures. He also made it a point to tell James that he would never lie to him. While Dr. Peterson’s forthright approach was to be admired, his honesty actually became a problem when I disagreed with his decision to tell James that he was terminally ill. Dr. Peterson and I argued repeatedly over this issue.

Standing firm to my beliefs I asked, How could you believe that it would be in James’s best interest to tell him that he’s going to die?

Defending his point of view, Dr. Peterson said, I’ve had to tell some children as young as nine that they were going to die, and while this might surprise you, they handled it quite well. Children need this time to adjust to their fate.

How does a nine-year-old understand the finality of death, never mind adjusting to it? I asked. What is there to look forward to if you take away the hope of recovery? I’m his mother, and I think that this should be my decision and not yours.

As we each stood firm in our convictions, Dr. Peterson finally agreed not to tell James that he was terminally ill, even though it went against his principles.

Three weeks after his surgery James came home from the hospital, but from that day forward everything about our lives changed drastically. To prepare for James’s radiation treatment, we had to go to the city so the radiologist could map the area of his brain to be radiated. A custom-fitted, plaster facial mask was made so the radiation could accurately target James’s tumor during treatment. My daily routine changed from transporting a station wagon full of giggling kids to and from school events, to the horror of hospitals, doctors, and the constant threat of death shadowing our lives.

There were no more Little League games to cheer, no more fun lunches with the ladies, as James’s treatment became the focus of our daily routine. To reduce the inflammation inside his brain, the doctors put my son on steroid drugs that caused him to gain an enormous amount of weight in a very short period. Watching our slim, energetic, eleven-year-old turn into a child bloated by weight gain tore me apart. James’ appearance changed so dramatically that many people didn’t recognize him. With all the other changes occurring in our lives, I never realized how James’s striking physical transformation would affect his brothers.

Anthony and James were always very close, not just because they were only a year apart, but also because they truly enjoyed being with each other. They watched TV together, played together, and even got into trouble together, with James always following his older brother’s lead. If Anthony said it was okay, James did it without question. They helped each other with homework and played baseball on the same Little League team.

At first, I thought the boys weren’t spending as much time together because James was feeling fatigued from therapy, but then I realized it was Anthony had suddenly become so busy with activities outside our home that it kept the two of them apart. Eventually, I noticed how Anthony would always rush out of the house as soon as he got home from school. He began doing his homework in the bedroom instead of the living room, where our family gathered in the evenings. Conversation between James and Anthony became almost nonexistent, as they spent less and less time together.

One day, Anthony came home from school and was again rushing to meet with his friends outside when I asked why he wasn’t spending time with James anymore.

Looking directly at me, Anthony innocently said, Because I don’t want to catch it. At first I didn’t understand what he meant by this strange response.

A little confused, I asked, Catch what, Anthony, what are you talking about?

What James has, I don’t want to catch it, so I don’t stay near him anymore. Stunned, I looked at my son, whose eyes were now filling with tears, asking him if he really believed that he could catch James’s brain tumor.

When Anthony answered yes, I suddenly realized how little I had explained to my sons about their brother’s illness.

Pulling Anthony close, I told him, What James has, you cannot catch! Your brother’s brain tumor is not like a cold or sore throat because germs did not cause it. I’m so sorry that I didn’t explain it to you properly, but please don’t be afraid of your brother because his illness cannot hurt you.

Suddenly Anthony began to cry, Then why does he look so different? When is he going to look like James again? Once again I was overwhelmed with guilt because I had neglected to explain the reason for their brother’s drastic change in appearance. Realizing my children needed a lot more information about James’s illness than I had told them, I decided to hold a family meeting. That evening, we gathered around our living room coffee table. Peter and I answered all the boy’s questions and reassured them that James’s appearance would return to normal once his treatment was completed.

Taking a seat next to James, Anthony said, You wanna play knock hockey, with James answering, I bet I beat you by four." And the two of them ran off to the basement playroom. It was good to have things back to normal. Thank God for little miracles.

The striking change in James’s energy level was an especially difficult adjustment for me. Born with the wonder of discovery, James’s imagination took him anywhere he wanted to go. His summer days revolved around dangerous adventure in our backyard, with daredevil skateboarding tricks that rescued him, in the nick of time, from his nemesis. The thrill of comic book hero stunts challenged his ingenuity, as he joyously cried out, Look, Ma, no hands! while popping bicycle wheelies in our driveway. It was as if danger never fazed this child, whizzing in and out of the house on roller skates a hundred times a day. A cold glass of milk and a Ring Ding seemed to provide all the nourishment he needed. Each time a softball landed on the garage roof, it was no problem for this eleven-year-old Superman, who could leap any fence in a single bound. My repeated requests for him to change that dirty T-shirt or scrub those knees were often ignored by this little boy, who looked like he never had a bath.

With all the chaos in my life, I had often yearned for a little quiet time, that is, until our world fell apart. Now it tormented me to watch my son mope around the house with little to do but gaze out the window at a world where everything was double. The doctors gave James an eye patch to relieve his double vision, but he hated wearing it because he thought it made him look like a pirate. With sight from only one eye, his field of vision was significantly reduced. The magic of his relentless energy was gone as he sat in front of his bedroom window, without his eye patch on, just staring into space.

When I asked my son what he was staring at, James said, I want to see the way I used to, Mom, but the sky is the only thing I can look at with both my eyes that isn’t double. It broke my heart to realize that the wonderful infinity of the sky had become the limit of James’s world, where normalcy was an illusion.

The doctors informed us that James would continue to suffer from double vision for as long as the tumor existed in his brainstem. They explained that his vision might correct itself if they were successful in shrinking the tumor with radiation. It was made clear that improvement could only be expected after all twenty-five treatments had been completed.

James’s radiation treatments were not scheduled to begin for another week, which added to my constant anxiety. Realizing that the end would come sooner if my son did not respond to radiation therapy drove me out of my mind. Each morning I’d wake up with the same heartache that I went to bed with the night before. Having no control over this insufferable situation, I decided to go to church and pray for a miracle.

Some days James and I sat in Saint Mary, Mother of Jesus, Church for hours, just lighting candles and talking to God. James asked Jesus to return his eyesight, while I prayed for my son to survive this terrible disease. Joe, the church caretaker, helped us fill the green glass vases with water for the flowers we brought Jesus and the Blessed Mother. Somehow the peace and tranquility of the Lord’s house made me feel protected. The smell of incense burning filled the old wooden church, as rays of golden sunlight shined brilliantly through the mosaic stained glass windows. The radiance from the huge windows spilled into the circular altar, casting a glow on the figurine of Jesus nailed to the cross. As I knelt before Saint Mary’s sacred altar, where I was married and where my children were baptized, I could feel God’s presence all around me. I believed with absolute certainty that he would not forsake us.

All our family and friends sympathized with our misfortune, but no one felt more compassion for our suffering than Anna Liveo, my sister’s mother-in-law. Less than a year before James became ill, Anna had buried her own forty-two-year-old son, who had died of a brain tumor. Realizing how much James wanted his eyesight back, Anna encouraged us to pray to Saint Lucy, who is the Catholic patron saint for eyes. Confident our prayers for James’s eyesight would be answered, Anna assured us that the power of Saint Lucy was very strong.

On our next visit to church, James and I knelt before the altar and prayed to Saint Lucy, a saint we knew nothing about but still reached out to in our desperation. As we were about to leave the church, I turned to pick up my purse lying beside me. Noticing a pamphlet on the pew, I picked it up and was astonished to read A Novena to Saint Lucy. I looked around the empty church to see if there were other pamphlets like this one, but I couldn’t find any. At first, I thought perhaps Anna had left the novena there for us but realized she couldn’t have known which pew we’d choose to sit in. Brushing this off