Steve's Story
Steve was a normal, happy, slightly hyper 8 year old
boy before his nightmare began. July 4th week of 1998
we took a family vacation to the coast of NC. Looking
back now, we all have realized that he was sick even then.
After the vacation was over, the family returned home and
went about our normal lives. But, something had gone
wrong with Steve. He complained to his mom Cindi of leg
pain and stiffness. Cindi did what all moms do first - she
took him to the pediatrician and was advised he was having
growing pains. The symptoms increased both in number
and severity, and she kept taking him back to the
doctor. Finally they did an ultrasound and found a mass
in his groin area. They decided the mass was a blood
clot, and scheduled surgery to remove it. During the
surgery, the horrible truth was revealed. Steve had a tumor
which covered a third of his abdomen. Though the
doctors had confirmed that the tumor was cancer, Steve
had to be sent to a larger hospital to determine the type.
He was transferred to Baptist Hospital in Winston
Salem, NC. There the cancer was confirmed to be Burkitt's
Lymphoma, a particularly fast type of cancer. There was a
successful protocol of chemotherapy for Burkitt's, and
they began a drastic regimen of chemo and scheduled him
for a bone marrow transplant to combat the leukemia which
was spawned from the lymphoma. The chemo was horrible
for him, making him extremely sick and causing his hair to
come out by the handfuls. His mom and dad decided to
shave his head so it would not be so uncomfortable for
him. His best friend Tyler offered to shave his as well
so Steve would not feel different. Steve loved him for that.
Those were long hard days for Steve and his family. He
was in and out of he hospital. We were fortunate that
he was well enough to be home for his 9th birthday on
October 4th. We had a party for him that Saturday at his
home, and I have never seen so many people for a child's
birthday party.! He was lucky that a donor was found
right away for his bone marrow transplant. They could
use umbilical blood from a newborn, and it was almost
a perfect match. The transplant would be done at Duke
University Medical Center in Durham, NC. They have
an entire unit there for these patients and they come
from all over the world. Steve had to be there for a
period of weeks before the transplant could be done
because the bone marrow that he had needed to be
killed by radiation so the new marrow would be
accepted. He got to come home on weekends, and
usually wanted to spend his time at his Granddaddy's
house in Mebane, NC or at his Grandma Barbara's
house in SC. One particularly good memory that I have
is taking him trick or treating last Halloween. My
roommate Beth carried him on her back when he got
tired. That whole weekend was good for him, and he
got to play a lot outside with his buddies. He returned
to the hospital at Duke. The following weekend was scheduled
to be his last free weekend away from the hospital for
3 months, since he was to remain in the unit after the
surgery to cut down on the risk of infection.
When he arrived at his granddaddy's that weekend, we
knew he was very sick. He spent most of the time
lying in Granddaddy's recliner in the living room.
When he left that day, he did something he had never
done before. He went to every person in that house,
gave each one a hug and told us he loved us individually.
As they were getting him in the car, I looked around at
my dad (his Granddaddy). Tears were silently rolling
down his cheeks and he said "I'll never see him again."
My father's words proved prophetic, because Steve's
liver failed shortly after that visit. The radiation and the
lymphoma had formed an insidious team to destroy his
liver function. They decided to try the bone marrow
transplant in hopes his body would manufacture enough
red blood cells to combat the cancer. The marrow was
working, making red blood cells, but not fast enough.
By this time he was on a ventilator. By the time
Christmas came, he was able to look at his gifts but too
weak to play with them. He was sleeping most of the
time. On December 30, we got up early and went to
Duke before I had to be at work. Steve was sleeping,
and the doctor came in and asked if he had been awake
at all. His mom asked him to open his eyes, and he
fluttered them once. The pain meds he was on kept
him asleep. That morning, Regis and Kathy Lee was on the
TV in his room, and the guests were the Backstreet
Boys. They began to sing "As Long as You Love Me", and
Beth got my attention. His heart rate had gone way up
when the music came on and went down when it went off.
We smiled, knowing he had heard it.
That night I got a call from my sister (his grandma Betty)
that Steve had slipped
into a coma. We drove to the hospital and stayed with him
and his family all night. My sister stayed there in the
morning, and I went to work. She called me at 12:30
that afternoon and told me Steve had passed away.
He had really only been breathing because of the
ventilator all night, and his family had to make the
impossible decision to let him go.
Steve fought this disease with the heart of a lion.
He worried more about his family than he did about
himself. When he went to heaven on New Year's Eve,
1998, he took with him the love of everyone who was
blessed enough to know him. Steve was kind, loving
and one of the funniest people I have ever been
around. He is missed desperately by his entire
family, and will never ever be forgotten.
This disease took this child in a matter of 5
months from the time of his diagnosis until his
passing. We would like to emphasize to all
parents viewing this page, if you know there is
something wrong with your child and the doctors
don't satisfy you, keep pushing until they do.
Change doctors if you must, but don't simply
accept the first diagnosis if you don't feel
that it is correct. Nobody knows your child
like you do.
