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many little things around here remind me of him. Each time
I pass by Duke Children's Hospital, my mind flies to the hours
spent with Kevin and his mother. At the clinic while they
awaited a medication. Or at 5200, the Pediatric Bone Marrow/Stem
Cell Transplant Unit, while they awaited his recovery from
the transplant. Or at 5300, where he was re-admitted just
weeks before his death. What I saw and felt over the last
year's journey with the Situ family has changed me in a way
that I never thought could result from an academic pursuit.
Last spring I enrolled in the course "Children and
the Experience of Illness," taught by Duke pediatrician
and photographer John Moses '78. The course objective was
to allow students a gateway into the experiences of terminally
ill children while simultaneously honing their skills of documentary
photography and writing. Each student was assigned a child
to work with in creating a documentary about the child's life.
A friend had recommended it to me when she learned that I
was interested in both photography and pediatrics; it seemed
a perfect fit.
I was assigned to work with Kevin Situ, an eight-year-old
Chinese-American boy who was at Duke to receive a cord-blood
(stem-cell) transplant in hopes of curing his rare immune
deficiency. Little did I know when I met Kevin that I would
be sitting here writing a story about this experience almost
exactly a year later. As I write, I'm surrounded by journal
entries and papers that I wrote along the way, e-mail messages
that his mother, Helen, and I exchanged, tons of photographs,
and the letter to Kevin that his parents wrote for me to read
at his funeral this Spring. It's been a long year.
The introduction of the paper I wrote at the end of that
first semester with Kevin sketches the beginning of his treatment
and of my relationship with him and his parents. Our first
meeting took place at the Ronald McDonald House just off campus:
He looks up at me and flashes a fantastic smile. We sit
down at the dining room table and I get out my camera. His
mother beams and pulls out a smaller camera, still in the
package. I tell her he can use whichever is the easiest for
him. She prompts him to tell me his name, and he shakes his
head shyly, eventually replying in a tiny but energetic voice,
"Kevin!" She prompts him again and this time he
tells me that he's eight and his birthday was "March
18!" He is small for his age. He doesn't seem too excited
that I'm here, but he is thrilled about the cameras. Opening
the package of the small point-and-shoot, he surprises me
by grabbing the battery and the film and loading them quickly
and efficiently--much more quickly than I could have done.
He takes his first picture of me and giggles when he is finished.
Kevin and I go outside for a few minutes and he takes several
pictures of cars around the house. His parents let me take
him out alone, but his dad tells me not to let him play in
any leaves because they might have fungus growing on them,
which wouldn't be good for him. They debate whether he should
wear a mask outside and decide that he's fine without one
for now. I take pictures of him. He runs around happily, hardly
speaking to me except for short responses to my questions.
You'd never know he was sick just by looking at him.
Over the course of that semester, Kevin's doctors prepared
him for his upcoming cord-blood transplant--the final hope
for curing him of the disease that had plagued him since birth.
I spent an afternoon or two each week observing, taking photos,
playing, and talking to Helen about her concerns for Kevin,
and about her life as a Chinese immigrant. She and Kevin even
tried to teach me how to write some Chinese characters, which
Kevin could do astoundingly well.
It's almost ironic to look back at the paper that I completed
after that semester because so much has changed since then,
and fears that were once just anxiety have come to pass:
As I sit writing this last page, Kevin is undergoing his
cord-blood transplant. The procedure is simple; the blood
is attached to one of the lines into his chest port. I imagine
that he is sitting in his bed playing with some Beanie Babies,
or better yet, writing the chapter "Stephen Takes a Nap"
in his book. He's probably giggling, too. But I haven't seen
him in four days. At this point, the chemo has completely
wiped out his immune system, so I have no idea what his current
condition is. Life in the Pediatric Bone Marrow Transplant
Unit is far from predictable. Unable to concentrate, I pick
up the phone and dial Kevin's room. No answer. I don't know
what that means.
I went home that summer, and by the time I got back to Duke,
Kevin had developed a serious fungal infection in his brain--an
infection that likely was incurable. After the experience
I had had with the Situs the previous semester, I couldn't
give up another opportunity to follow them, to learn as much
as possible about what they were going through, and to document
the experience. I signed up for an independent study with
John Moses and set to work. This time, I met with Kevin's
doctor and she gave me pamphlets and books about the program
and treating ill children. I read up on the transplant procedure
and the psychological effects of such treatments and diseases
on children and their parents.
Again I spent an afternoon or two each week with the Situs,
though sometimes it was just with Helen, who needed someone
with whom to talk through everything. Those months are a blur
of infections, emergency-room visits, good CT scans along
with hopeless ones, and a lot of waiting:
The more time I spent with the Situs, the more I realized
that Kevin's illness and subsequent treatments were not only
tiring, frustrating, emotionally draining, and unstable, but
they also forced the Situs into a position where all they
could do was wait. Not knowing how long they would have to
wait, or what they were waiting for, they have been waiting
for months and years to cure Kevin of the mysterious disease
that has brought them all to Duke. Results from one day could
change drastically the next. Results that seemed positive
one day turned negative the next when that day's additional
circumstances were factored in.
I completed my second documentary project with Kevin in
December, just before he was readmitted into the hospital
for the final weeks of his life. I returned to Duke in January
to find that the fungal infection that had been growing in
his brain was rejecting treatment and spreading rapidly. His
condition declined each week that I visited until the last
time, when he slipped into a coma and lay peacefully on his
bed while his mother and I sat down to plan his funeral. I'd
never planned someone's funeral before, let alone that of
a child--a child who was still breathing deeply on the other
side of the room.
It was not until after Kevin died, or until after the stress
of the funeral ebbed, or until after Helen and David headed
back home to Delaware, that I understood just how much this
little boy and his family had changed my perspective and inspired
me, and just how much I miss their weekly company. From his
incredibly detailed crayon drawings, to his creatively written
stories, to his passion for learning Chinese and his love
for playing computer games, even when weak and nauseated from
treatment, Kevin taught me about living a full, fun, and stimulating
life--no matter what circumstances come about.
In all of the time that I spent with Kevin over the last
year, I never once heard him complain--something that was
surely his right after all that he had been through. When
I enrolled in "Children and the Experience of Illness,"
I had no idea that he, along with his mother, who moved to
Durham to find him treatment and who sat the long hours in
the clinic and worried herself to sleep each night, would
turn out to be two of my life's greatest teachers.
-Connors '04 is an intern for the
magazine.
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