name is Joel, and my story is about a miracle.
I had just graduated from elementary school. Junior high started out fine...until
about November. Then things began to change. First I came down with colds
and the flu and sinus infections. Then I got headaches and nausea and painful
knee cramps and bone chilling shivers. I even started seeing double, and
I was bumping into walls and tables and losing my balance! Besides all
of that, I was exhausted ALL the time. I remember my frustrated parents
poking me and yelling, just so I would wake up.
After going to what seemed like a thousand doctors, and having even more
tests, I learned that I had a brain tumor. I was in shock. Twelve years
old, right before Christmas, and I had a tumor growing inside my head.
I was told that I'd have to go to the hospital, have surgery to remove
the tumor, and come out ten days later looking like Kojak. So a couple
of days later, less than twenty-four hours after I had turned thirteen,
I entered the hospital world. Before I could have the operation, I had
to have yet another test, an angiogram, to try to pin point the exact location
of the tumor. It turned out that I was allergic to the dye that was used,
so I spent the rest of the day vomiting.
I had a CT scan next. The dye that had been used in the angiogram made
it possible for the doctors to visualize what was going on in my brain.
It was bad news. My parents were asked to go into a small room to meet
with the docs who told them that an operation wouldn't help me. They learned
that the tumor was throughout my brain-stem. The brainstem is the area
where the spinal cord connects to the brain. They were told that I had
from two months to two years to live, and that nothing could be done to
help me. After they stopped crying, they came back into my room and decided
not to tell me what the doctors had said. They didn't want me to lose hope.
I only found out about the terminal prognosis a few years ago, long after
the "deadline" had passed.
the next few days, I was "visited" by a number of other neurosurgeons,
who said pretty much the same thing. I even had an MRI that reaffirmed
the diagnosis. Everyone assumed that the tumor was not malignant because
it was growing slowly. I was still at a pretty scary place in my life.
scans were sent to the top neurologists in the United States, England,
France, and Switzerland. All of the doctors who examined them said the
same thing, "send him home and let him live out whatever time he has left."
While the scans were making their way around the world, I remained in the
hospital. I was placed on a powerful steroid to reduce the swelling in
my brain, and even though I was pretty nauseous from the medicine every
morning, I was able to make the most out of my hospital stay. Instead of
my pj's, I wore Levi's and T-shirts. The play therapists provided video
games and movies, and I played board games to keep busy. My parents rented
movies for me, brought in pizzas for a Super bowl party, gave me books,
games, and balloons. I got to know the resident doctors and nurses pretty
well and I even "dated" a nurse. Every Wednesday night we watched the television
show St. Elsewhere together. I could eat whatever I wanted and sometimes
I even wrote in food not on the daily menu. It would arrive from the coffee
the week, my dad dropped my mom off every morning and came back after work
to have dinner with us. My brother and sister came to visit as much as
they could after school. My sister's four years older than me, and she
knew about the prognosis but didn't let on. My brother's three years younger,
and he had trouble understanding what was happening to me. My aunt and
uncle visited almost every afternoon, often bringing me a cheeseburger
and french fries from the Fatburger around the comer from the hospital.
I had many other visitors, too, and lots of flowers. Two of my neighbors
brought me a plant that is still alive today, almost fifteen years later.
I became friends with the balloon delivery man, who made almost daily deliveries.
He even got his friend, Mr. T., from TV's The A Team to autograph some
posters for me. I was sent well wishes from actor Tom Selleck and astronaught
Robert Crippen, who flew on the first space shuttle mission.
the first few weeks of my stay in the hospital, I was visited several times
by the on-staff psychologist. All she did was sit and stare at me, waiting
for me to say something. I finally had had enough, and banned her from
coming near me.
did have my share of bad days, though. One weekend when my best friend
came to visit, we played the board game "Life." After he left, I lost it.
I couldn't understand why this was happening to me. I wondered what I had
done to make God mad at me. I was ready to jump out the window. The tears
kept flowing, though after an hour or two, I had calmed down enough for
my parents to go home on the condition that I was not to be left alone.
four weeks into my hospitalization, one neurologist came up with a plan:
radiation therapy. Though it offered little hope (though I didn't know
that), it was the only option. Instead of radiating my entire head with
the normal dose, the plan was to aim almost twice as much directly at the
tumor. Because the radiation was pin-point, a plaster mask had to made,
and target areas drawn on the sides. I was taken down to radiology and
left in a freezing waiting room for about ten minutes. The process involved
having my head covered with a type of saran wrap, and wet plaster applied
over that. The plaster was dried with a hand-held heater. I was
terrified by the fact that
the technician, who appeared to be in her seventies,
couldn't stop shaking...while
she was holding the heater.
about two weeks of treatments, I was discharged with the plan to continue
the radiation on an outpatient basis. Since the radiation was restricted
to the sides of my head, I didn't lose all of my hair--just on the sides…a
real mohawk. I grew the hair on top of my head long enough to cover my
baldness, and the longer hair fooled everybody except me. I took to wearing
baseball caps round the clock, inside and out. While I was in the hospital,
I became friends with two younger patients who had cystic fibrosis, Chance
When I was receiving the radiation as an outpatient, I had to go through
Pediatric Clinic (my mom later
volunteered in the clinic after I had gone back to school the next year).
I met another patient at the clinic who was a few years older than me.
Later that summer, Steven went to Camp Rainbow with me, a camp designed
for children with cancer and other life threatening conditions. The week
that I spent there gave me a major psychological boost. The other campers
and the medical counselors were equally affected by their experiences during
that week of fun and nonstop activities. Unfortunately, Steven later
died. I'm glad that I knew him. I met another friend there during the camp's
inaugural session and we've remained best friends for over 14 years.
He's a cancer survivor.
treatments at the clinic continued five days a week for the next four weeks.
To everyone's surprise except mine, the radiation appeared to work. The
tumor's core began to break down and the tumor itself shrunk. The doctors
told my parents that the tumor, or whatever was left of it, would remain
inside my brain-stem for the rest of my life, and they weren't sure how
long that would be. A few months after leaving the hospital, with most
of my strength back, my aunt and uncle fulfilled my greatest wish, a twelve
day trip to Disney World. Of course everyone believed that this would be
my last wish. That is, everyone but me!
When I returned to school, I was distanced from some of the other kids.
Looking back, I guess I started
taking life a lot more seriously than most teens
do. I related more to
adults than to kids my own age. Most of the people at
school knew that I had been
sick, but they didn't know why. At least that's
the impression I got.
Every school has different groups, I was not in the
"popular/pretty people" group.
Not rich enough. Of the people in my group,
only a few knew about the
tumor. It was not the topic of conversation. I was
shy, introverted, and unsure
I am now approaching the fifteenth anniversary of my diagnosis and terminal
prognosis. To this day, the doctors do not know why I am still here. My
parents and family believe it's the work of a miracle. Looking back, I
don't think I could've handled it had I known of the prognosis. As it was,
death never entered my mind.
My doctors never discussed
any long-term effects with my parents or me. They assumed that I would
not live long enough to experience any, but I did, and I do. Most are due
to the radiation, but some are caused by what's left of the tumor. The
nerve in my left ear was basically destroyed by the radiation, so I'm about
90% deaf in that ear, and I've been told that nothing can be done to help.
My balance isn't what it used to be, I lose it every now and then, and
I still suffer from double vision and fatigue.
Because of my experience, I have decided to become a Child Life Specialist
and work with hospitalized children. I am an associate member of the Child
Life Council, and I hope to begin an internship in the near future. In
two months I start an Educational Technology Masters program. I plan to
use the knowledge I gain in my future work in Child Life. Maybe this is
why God kept me down here, to help others.
if he would only throw a 6 of 6 winning California Lottery ticket my way...