James' Story

The words pierced my soul: I'm sorry to tell

you this, but your son, along with 100 other children
treated for leukemia, was not given the national
standard of care.
I thought I had heard all the worst things a
parent could possibly hear: I'm sorry to tell you that
your son has leukemia. . . . I'm sorry to tell you that
your son has relapsed. . . . I'm sorry to tell you that
your son will die tonight.
Just when the wounds were beginning to heal,
just when the loss of our 20-year-old son, James, our
first child, was finally becoming bearable, this
numbing news came from the University of New
Mexico Medical Center, ripping the scabs right off
my heart.
And why were they calling us now! Why on
the eve of April Fool's Day? Was this some kind of
perverse prank? Why only five days after what would
have been James' 22nd birthday? Why were they
prying open our deep, raw wounds? . . . Why? . . .
Why?
The hospital told us that for reasons that were not yet clear, James' oncologist, Dr.
Marilyn Duncan, did not follow the treatment guidelines established by two national
pediatric cancer groups. Instead of using a three- or four-drug arsenal to wage war against
the cancer cells, she had prescribed a chemotherapy regimen, developed in the 1970s and
long since abandoned, that involved only two drugs. The difference between the two
strategies, we would later learn, was the difference between a survival rate of 28% and one
of 75%. In other words, James might still be here . . . .
In defense of herself, Dr. Duncan insisted that if the children under her care had been
treated more aggressively, the toxic effects on their central nervous systems would have
been unpredictable. As the hospital's only full-time pediatric oncologist, she argued, she
could not possibly monitor such varied side effects to so many patients. For that reason, she
opted for a more conservative approach.
As long as I live, I will never be able to accept, or forgive, her decision. Not only
because I believe it cost our son his life, but because we, like so many other parents, were
never even given a choice. None of us were ever told that if we wanted state-of-the-art
medical treatment for our children, we would have to go elsewhere. In fact, those who
inquired were discouraged from going to other institutions. Again and again, we were
assured that the care James was receiving was as good as it would be anywhere else in the
country.
 "How could something like this happen?" my wife, Linda, and I anguished, feeling
rage for the very first time since it all began. How could a doctor do that to a child, to 100
children? How could a nationally renowned medical center let it happen?
We may never know the answers, but this much I do know: our trust was betrayed.
Words can't even begin to express my feelings, my pain, my loss. Nevertheless, I'm
compelled to tell this story, James' story, to help others make sure that this never happens to
them.
James' nightmare had begun five years earlier, with the most innocent remark a body
can make to its owner, fatigue. In the fall of 1991, James had begun to nod off in class.
During a home soccer match one evening at the Albuquerque Sports Stadium, he nearly
collapsed on the field. "The doctor said it might be mono," James sighed to my wife, Linda.
"Anything but mono," he dreaded. Those words would come back to haunt us all.
Mono was a good guess. James was, after all, a pretty driven 15-year-old. He was
a conscientious student, active in clubs both in school and out, and a devoted soccer player
since the age of 5.
Our expectation made the final diagnosis that much more stunning: acute
lymphoblastic leukemia — cancer of the blood — and a high-risk form at that. Abnormal
blood cells were dividing wildly, crowding out not only the healthy white blood cells that
marshal the immune system, but also the red blood cells that carry oxygen to the body as
well as the platelets that enable the blood to clot.
First came shock. Then came tears. Finally came fear — fear of the unknown, fear
of suffering, fear of defeat.
The date was October 17, 1991, a Thursday. My thoughts turned to a moment
several years earlier. I had been coaching a soccer team of 10- to 12-year-olds, and one of
them, Melvin, our #1 goalie, showed up one day with a hooded sweatshirt covering his
head. "I had chemotherapy and lost all my hair," he explained tearfully to his buddies.
"We're just glad you're here," they responded in unison before breaking out of a huddle.
God was comforting Melvin, but he was preparing me.
Breaking the news to James was the hardest conversation I had ever had with him.
Once he absorbed the impact of the words, he was scared, but remarkably brave. His
courage was confirmed when we met with the oncologist. "Will I be able to play soccer?"
he asked. I was heartened to hear his question. This was a kid with a winning attitude, and
he would certainly need one to lick this thing.
Hours after the diagnosis came another blow. My ailing grandmother, my last
surviving grandparent, had just died. There was grief, but no time to grieve. James needed
to begin treatment right away, and there was a deluge of details. It was almost as if Nana
was creating space in our lives so that we could focus entirely on our son. Later that night
Kevin, our other son, spoke for all of us when he said that it had been "the worst day of my
life."
For James, as well as for our 14-year-old son Kevin and our 10-year-old daughter
Jan, the carefree days of childhood had just come to an abrupt end. Deep in my gut I had
this strange feeling that we were all embarking on a roller coaster ride, and that this was
only the first of many ups and downs, twists and turns that lie ahead.
 Acute leukemia hits hard and fast. Within three days of the episode on the soccer
field, James could hardly get out of bed. Every year leukemia strikes some 29,000 people in
the U.S. and claims the lives of another 22,000. About 1 in 1,000 children are diagnosed
with the disease by age 19, accounting for some 35 percent of all childhood cancers. Like
many forms of cancer, its cause remains a mystery.
There was at least one shred of encouraging news. Of all the forms of cancer
James could be afflicted by, we were told, leukemia was one of the most treatable. In fact,
great strides had been made in recent years. In the early 1960's the 5-year survival rate for
children with leukemia was only 4 percent. By the mid-1980's, thanks to advances in
chemotherapy, that figure had soared to 73 percent. Fortunately, these cutting-edge
treatments would be available to James only a few miles away, at the University of New
Mexico's Children's Hospital, a nationally renowned medical center.
Chemotherapy treatments for leukemia are harshest in the first month, but they
almost always achieve remission, a stage where no cancer cells can be detected. Staying in
remission is the real challenge. With three years of chemotherapy ahead of him, James
knew he was in for a rough ride. On the day he was confirmed as a Catholic, he chose Jude
as his confirmation name — after the patron saint of desperate cases.
Some time later, James started to record his deepest thoughts and fears in a
journal. An aspiring architect, he loved to draw, and he filled the pages of this volume with
striking, vivid pictures. Some of his words and illustrations appear on the following pages.

Spinal taps suck! Today I had to get one. They don't

hurt at the time, but right now I have a massive
headache. Sometimes I feel as though I have to put
on a show so that people believe that I'm all right. I
guess that's why I'm going out tonight. I'd much
rather stay home.

James was gravely ill, but to look at his crowded schedule you would never know
it. He would go for chemotherapy one day and play an 80-minute soccer game the next. On
top of his starting spot on the soccer team and his diligence in school, which had earned
him a 3.4 average, he had become a leader in student government. One of the most popular
kids at school, he was so admired by his classmates that they voted him "Best Personality."
Nevertheless, I was growing concerned about his long days, and I told him so.
"Dad, you don't understand," he responded. "I need this!" It was then that I realized that
James' instincts were right. The only way to beat something like this is to not let it beat you.
I never again discouraged his activities.
Three years into James' illness, the fighting spirit that had won him so many
victories on the soccer field was yielding another kind of triumph. He was off treatment and
still in remission. The doctor's words were music to our ears: "James has a 90% or better
chance of being cured. You cannot do any better than James has done." The roller coaster
had finally seemed to come to a halt.
 These are the days I dread. Today I got a blood test and waited
for the results. I don't know what I would do if my leukemia
came back. Oh God, please send St. Peregrine [the patron saint
of cancer patients] down to help me make it through this time of
fright."

Normally, kids undergoing extensive chemo have a central line inserted into the
chest. But James chose to withstand relentless IVs just so that he could remain active. After
hundreds of needle punctures, the only accessible veins in his body were those in his
fingers and feet. On one occasion, after several unsuccessful attempts at finding a usable
vein, a nurse inserted an IV into James' foot. As I held his hand, I could actually feel his
pain. He squeezed my hand like a vise, digging his fingernails deep into the flesh of my
palm. My pain was excruciating, yet no doubt only a fraction of his.

You can't believe how hard it is for me to look at my

body in the mirror. Bloated face and stomach, legs
skinny and weak. It's like this body doesn't belong
to me. I look in the mirror and I see someone else's
face. It's hard. Tears of a clown, I guess.

As sick as he was, James never lapsed into self-absorption

or self-pity. He simply cared too much about other people to ever let
that happen. He loved working with younger kids, for example, and
when he was asked to be a counselor at Camp Enchantment, a nearby
facility for young kids with cancer, he beamed with excitement. He had never had time to
attend the camp himself, but now he would enjoy it from an entirely different perspective.
Instead of being a patient, he would be a caregiver. Nothing could make him prouder — or
happier.
One of James' biggest thrills came the summer he met Andrea Jaeger, the former
tennis pro. She had founded the Silver Lining Ranch, a camp in Aspen, Colorado for
youngsters with cancer. When some kids from Croatia canceled at the last minute, James
got to go. He was always very fond of inspirational quotes, and one of his favorites was
from Helen Keller. "Life is either a daring adventure," she said, "or nothing at all!" In
Aspen, James took her advice to heart. He went white-water rafting and mountain biking,
and played tennis with one-time superstar Chris Evert.
Andrea invited him back for the following year, this time as a counselor. What
impressed her most, she said, was his kindness. "He was the boy who danced with the girl
no one else would dance with," she noted, "and who picked the smallest kid as captain of
the team."
During the fall of 1994, life was becoming "normal" again. Having completed a
brutal three-year course of chemotherapy, James was anxious to begin his freshman year at
the University of New Mexico, where he had won a scholarship. School, soccer, work, and
socializing would no longer need to compete with frequent clinic visits. Now there would
be time for other pursuits — art, architecture, rock climbing, and new friends. Most
pleasing to James, these new friends would know him not as a cancer patient, but as just
another student.
On February 17, 1995, as I was returning from lunch, a phone number flashed
across my pager. I recognized it immediately; it was the clinic. I was terrified to return the
call. James' blood counts had been unstable for weeks, and I sensed bad news. It was the
worst news possible: cancer cells had returned. I felt as if someone had just punched me in
the gut, knocking the wind right out of me. After six cherished months of tranquillity, the
frenzied roller coaster ride was starting all over again.

Well, it finally happened. The worst of all my nightmares. I

relapsed today. I have to get a bone marrow transplant now. I
thought I had won the fight, but I'm not done. It was simply
intermission.

A bone marrow transplant (actually called a bone marrow rescue) was now James'
only chance for survival. Doctors would try to kill off the cancer cells with lethal doses of
radiation and chemotherapy. Along with the bad cells, however, would die the good ones
— the white blood cells that guard against infection. Without bone marrow from a
compatible donor, James' body would never be able to tolerate such an assault. And there
was one big hurdle: the chances that one of James' siblings would qualify were only one-in-
four. If neither Kevin nor Jan was compatible, the odds of finding a suitable donor outside
the family would be akin to winning the lottery.
We would need to spend the next four months in Seattle, where the complex
procedure would be performed at the Fred Hutchinson Cancer Research Center, the world's
first and foremost bone marrow transplant facility. Touching acts of generosity and
kindness poured in from every quarter. Both American Airlines and Southwest Airlines
offered us round-trip tickets. My benevolent boss redefined my assignments to research
projects, permitting me to work long-distance and, most important, keep my job. And
countless heartwarming gifts arrived — cards, letters, bouquets, fruit baskets, even checks.
Most comforting of all, we could feel everyone's love and prayers.
Off we went to a strange city on the day after James' 19th birthday. Friends and
family members had gathered for the event, a bittersweet occasion that was part celebration
and part farewell. Before sunrise, Kevin drove the four of us to the airport. Adding to our
sadness and anxiety was the fact that he could not join us because he had to finish out the
school year.

I feel like a soldier heading off to battle . . . .

During our second week in Seattle the roller coaster took two plunges, one right
after the other. A routine test showed that James' blood was tainted with Hepatitis C, which
had been contracted from an earlier transfusion and might increase the risk of liver
complications during a transplant. Then DNA tests revealed another problem: Jan's bone
marrow, which was first thought to be a perfect match, was now feared to be a mismatch.
After what felt like the longest weekend of our lives, the doctors finally decided
that although Jan's marrow was indeed a slight mismatch, it would be compatible enough to
give James a fighting chance. Linda and I were so proud of Jan. She was able to do
something for her brother that no one else in the world could do, and she agreed to it
without giving a thought to how the marrow would be harvested from her hips. Kevin was
grateful that James would have a donor, but deeply disappointed that nature had cheated
him out of the chance to save his brother's life.
On April 19, 1995, a liter of bone marrow was extracted from Jan at 8:30 a.m. As
Linda and I waited anxiously outside the operating room for news, another kind of news
was flashing over a nearby TV set. A federal building in Oklahoma City had just been
bombed, killing scores of people. At that moment, we became all too aware that James was
not the only one on this planet who was coming face to face with death.
One of James' doctors personally escorted the "liquid gold," as bone marrow is
sometimes called, to our son's room. Presenting it to James, he wished him a happy
birthday. A bone marrow rescue, he explained, is considered a kind of "new birth." James
and Jan were already close to each other, but now they would be closer than ever.
The life-saving liquid was given to James later that afternoon during a 4 1/2-hour
transfusion. The transplant, we were told, appeared to be a success. Why is the bad news
always so certain, and the good news always so tentative? If James could stay cancer-free
for the next five years, he would be considered cured.

One thing I'm sad about is that I may never have children of my
own. Would that prevent me from getting married or will
someone still love me regardless? There are just so many
questions which cannot be answered.

The hospital didn't place James in strict isolation, but it took every possible
precaution to shield him from infection. Visitors with even the hint of a cold were not
allowed. Everyone had to wash their hands every time they entered the room or even
touched something that might carry germs. Blankets were kept in a warmer until needed.
The room was wiped down with a germicide every day. And no flowers, or any other
potential source of mold or fungus, were permitted. Utterly defenseless, James was in
jeopardy, and no one was taking chances.
Exactly one month after the transplant James was discharged from the hospital,
but it would take another two and a half months of intense follow-up care before we could
return to Albuquerque. During that time I guess you could say that Linda, Jan, and I earned
our medical stripes. We were trained to operate an IV, sterilize the line, maintain a sanitary
environment, and provide for James' special nutritional needs. I specialized in setting up
and adjusting the digital IV pumps, while Linda proved much better at managing the
complicated daily regimen of medications. James entrusted Jan with the vital role of
sterilizing the entry site of his central IV line. James' life was literally in our hands, and we
lived in constant fear that we would make a critical error.
Each of us had a clearly defined role, except Kevin, whom we had left behind in
Albuquerque to be shuffled between grandparents, friends, and an occasional trip to Seattle.
Our aching hearts hurt even more when Kevin told us one day that he felt as if he was "no
longer a part of the family." We prayed at every available moment, not just for James, but
now for Kevin and our entire family, which would need all the strength we could muster to
get through this frightening ordeal. We took great comfort in the fact that within walking
distance of the hospital was a church named St. James' Cathedral.

Today I'm writing because I have no one to

talk to. This is probably the saddest time I
can recall. It seems as though I have
nothing to live for. Everything I love has to
be put off until I can return home. School
— can't do it. Soccer — can't do it. Meet
new people — nearly impossible. I've got
nothing to look forward to. Everything is in
the now.

Once home, Linda extended her leave of

absence from work. With me at the office and Jan and
Kevin in school, Linda was now James' primary
caregiver. The already strong bond between mother
and son became even stronger. James loved to gently
tease his sometimes overly attentive mother. "Mom,
why don't you go out to lunch today," he would
suggest with an impish smile. "And maybe even a
movie." Whenever James would start to get on her
nerves, Linda would in turn tease him, "James, why don't you go out to lunch today with a
friend. And maybe even a movie."
Even an afternoon at the movies, however, was no longer routine. Before going
outdoors, James had to take certain precautions to avoid adverse reactions from the sun. In
addition to wearing a hat, he had to apply sunblock to his entire body, even under his
clothes and even if he was stepping out for just five minutes on a cloudy day. Equally
important was the need for cleanliness. One minor infection, and James' life would be in
peril. He had to worry about what he ate, where he ate, what he touched, and even where he
sat. The sign we posted on our front door said it all: "No germs — please wash your
hands."
Sometimes I sit and look out my window, wondering what it
would be like to live a normal life. Most people have a life they
can control, not one that falls apart just as it becomes rebuilt.
What makes one person prosper while another suffers? Is it
fate? God? Anything else? I wonder.
 During the eight months after we left Seattle, James was able to overcome a series
of life-threatening crises that put him in the hospital for weeks at a time. But in the spring
of 1996 he faced his biggest challenge yet, a third recurrence of cancer. With each relapse
the fight had become tougher and tougher, and five years of struggling had clearly taken its
toll. Yet somehow, James found the strength to enjoy life to its fullest.
At a party that spring he had met a girl named Daphne. One look at her sparkling,
big blue eyes, and he felt an instant connection. Linda and I knew she must be pretty
special when we heard that Daphne was unfazed by something that had happened on their
first date. On the tram coming down from the mountains, James threw up during a bout of
nausea. Daphne took it all in stride. They remained inseparable until Daphne returned to
school in Missouri. While she was away, they kept in touch by phone, e-mail, and an
occasional surprise package. They loved to reminisce about the nights they stayed up late
stargazing from our backyard trampoline, talking endlessly and searching for shooting
stars.
By now, nothing the doctors tried could keep the leukemia in check any longer.
James was as frail as could be, requiring blood transfusions every few days. But he insisted
on taking a plane to Missouri to visit Daphne, by himself, before he got worse. Despite a
hospital stay the night before he returned, as well as his confinement to a wheelchair, James
was surprisingly animated when he got off the plane. We all
knew why. He was in love.

Today I made my valentines. I really like

them a lot. A hand-made card is better than
any store-bought one.

From the airport we took James straight to the hospital, where one complication
after another set in. On July 4, 1996, Independence Day, our son finally achieved his
independence from cancer. Just before the end came, James told us how much he loved us.
The last piece of music he requested was a song by Van Morrison. The lyric began: "Have I
told you lately that I love you?" It was a gift I will carry with me always.
These thoughts have been going through my mind all day:
"If I had my life to live over again, I'd try to make more mistakes.
Next time, I would relax. I would limber up.
I would be sillier than I have been this trip.
I know of very few things I would take seriously.
I would take more trips.
I would climb more mountains, swim more rivers, and watch
more sunsets.
I would do more walking and looking..."
— Nadine Stair
 On March 26, 1998, James' birthday, Linda
and I planned to visit his grave with a dozen helium
balloons; one of them inscribed with the words Happy
Birthday! As I left work early to drive home, the
normally sunny Southwestern skies turned gray and big
raindrops began to collect on my windshield, as if the
skies were weeping.
James' grave is located under a pine tree.
We had chosen the spot with great care, since evergreens
symbolize everlasting life. I asked Linda which color
balloon she wanted. She picked green, James' favorite
color. I chose one that was bright red, so that I would be
able to see it easily.
At precisely the same moment, Linda and I
let the balloons drift skyward. As the wind carried them
northwest, they rose quickly above the horizon. I noted to
Linda how they stayed so close together during their
ascent. As they got smaller and smaller, Linda's eyes
filled with tears, much as the skies had done earlier. I
tracked the flight of the green and red balloons as they danced and darted, until they were
no more than floating specks. Suddenly they passed through the high clouds, off toward
heaven, off toward James.
Shortly after the controversy came to light, Dr. Marilyn Duncan resigned her post
at the University of New Mexico Medical Center, but only after her entire pediatric
oncology team threatened to quit if she did not step down. Several months later she
surrendered her medical license.
More than two dozen families, including my own, filed lawsuits for either
malpractice or wrongful death. Although the University settled the case out of court in less
than six months, to date no one has admitted to any wrong doing or committed to any
specific corrective actions. Neither apologies nor reforms, of course, will ever bring my son
back. But if James' story can help spare others a similar tragedy, his death will not have
been in vain.
To anyone unfortunate enough to endure a similar ordeal, I beg of you: Never stop
learning about your loved one's disease and treatment. Never stop asking questions. Never
accept an answer you're not totally satisfied with. Never settle for a single opinion, no
matter how highly esteemed its source. Never feel shy or intimidated about challenging
those in authority. And never stop being a forceful advocate for your loved one. Never.
By John Ledwith
Write to James’ dad at jledwith@aol.com

Go Back to James Ledwith Memorial Scholarship Home Page