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After creating a documentary with the
Situ family about their experiences with Kevin’s illness,
I have compiled a second project with them in an attempt to
further explore such a complex issue.
At the end of April, Kevin received a cord blood (stem cell)
transplant that was intended to solve his immune deficiency.
If all had gone well with the transplant, the Situ family
would have been back home in Delaware by now. But in the aftermath
of the procedure, Kevin’s immune system was far too
weak to fight off a fungal infection that began to grow in
his brain.
Swelling from the infection caused a series of seizures.
They admitted him, did CT scans, brain biopsies and a spinal
tap, finding that he had a six spots of fungal infection—which
are not easily treated. This came as a shock to the family
since Kevin had appeared to be stable.
Then the news came that Kevin had rejected his stem cell
transplant. But before deciding what to do about his rejection,
the fungal infection—a critically serious infection—needed
to be solved. The transplant, infections, and medications,
and isolation left Kevin tired, worn-out, and unwilling to
play with me, so I spent most of my time getting to know his
mother, Helen.
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. Unknowing of 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.
It is this waiting game and its consequences, both uplifting
and distressing, that I have sought to explore.
13 December 2001
* * * * *
I step off the elevator on the fourth floor of the Duke
Children’s Clinic. I wind slowly through the brightly
colored hall, walls decorated with happy paintings of animals,
cartoons, and children. It’s apparent that the two-year-old
building was designed specifically to ease the fears of children,
and to dispel the stereotypic feeling of “uncomfortableness”
in a hospital clinic. When the color of the floor changes
from white to purple, I veer left into a long, narrow room
filled with chair upon chair set up in front of TVs and windows
for children who come in to receive treatment, often having
to sit for several hours while IVs trickle slowly, one droplet
at a time into their central lines, which administer the medications
directly into the blood stream. A nurse directs me to the
room Kevin is using today—a single room that connects
to this main room—and I see him sitting on the bed through
the sliding glass doors. He gets a room to himself—isolation.
He looks up from his art project and waves a tired wave. His
mother rushes to the door to let me in. I haven’t seen
Kevin or Helen in over four months since I left Durham for
the summer.
As to be expected, Kevin looks different after what he’s
gone through in those long months. His face and tummy are
swollen, though the swelling has apparently gone down from
its peak when he was taken off heavy doses of steroids. He
has dark circles under his eyes. His hair, which he had lost
since our last visit, is starting to grow back in. But, in
addition to the hair on his head, it’s grown all over
his arms, and legs. I am surprised to see his face covered
in fine, but thick black hair.
While I am there, Kevin, in his florescent green polo shirt,
works on an art project with stickers while an IV, containing
white blood cells that had been harvested days earlier from
his father, drips into his chest port from one side of the
bed as another pouch, sitting on his bed-table, feeds another
medication-filled tube under his shirt. As usual, he seems
oblivious to his treatment as he plays with pokemon cards—a
gift from the son of a lab technician—and demands that
his mom bring in a computer for him to use. Helen brings him
the small computer provided by the clinic and Kevin gets to
work playing a trivia game, occasionally interjecting questions
into the conversation: “What is a gopher?” and
“What do call someone who studies plants?” I tell
him the answers and he claps happily when the computer makes
the “correct” sound.
A nurse practitioner comes in to inform Helen of some new
test results. I try to make conversation with Kevin as another
nurse, wearing bright pink and multicolored scrubs, comes
in to take his temperature and blood pressure. He doesn’t
seem to mind in the least bit, and continues to extinguish
any of my efforts to start a conversation. Helen says he is
tired. He looks it. He should be tired. “We’ve
been here so long,” Helen tell me. “We thought
maybe we’d be going home soon, and then he got the infection.
Uh..so long…”
* * * * * *
One afternoon, Helen invites me to see their new townhouse,
a vast improvement over their last apartment: spacious and
freshly painted with two bedrooms and newly rented furniture.
Kevin is playing Wheel of Fortune on the computer and makes
it quite clear that he does not want me to join him in the
game, the beginning of an emerging pattern Helen and I sit
down and begin to talk about Kevin’s medical history—a
topic that I’ve never fully known.
She begins by telling me the long and tangled story of how
they learned that Kevin has an immune deficiency:
“It’s different from other parents. They’re
like, ‘Oh finally have a diagnosis.’ For us it’s
kind of always something, and the diagnosis is not clear.
So I say, ‘Oh I don’t know, maybe around when
he was around four or five.’
The first thing was when he was four months old. He’s
he got an abscess on his head, and a low fever, so we go to
hospital, and they keep him in the hospital. And then after
a week he’s changed so dramatically that he couldn’t
breathe so he went to the intensive care. And they tried to
figure out what’s wrong with him because just suddenly
he can’t—he doesn’t have enough oxygen and
he depends on a machine to breathe for how many? I can’t
remember and then come out of intensive care and then get
a fever again and then back to the intensive care. Back and
forth for so long. At that time, he was in the hospital for
four, almost four months in the hospital. I remember we discharged
on Thanksgiving .
And at that time we just kept thinking, oh is he going to
make it? And the doctor just kept saying he just has some
kind of a, oh the name—I can always not remember it.
But in the bone marrow they did a test and the bad cells eat
the good cells. That’s the disease at that time that
they say it is. They say in the whole world they only have
twenty cases like this. So it’s a very rare disease
at that time. But after four months we go home and we’re
still scared and we keep visiting hospital, but eventually
he getting better.
And then when he was two we moved to the Chicago Children’s
Hospital, you know the famous one, so we went there and they
repeated the tests about the bone marrow diagnosis that they
did before in New York and they couldn’t see the same
things. So we thought, ‘Oh, that disease disappeared?’
So we just didn’t know. And then actually between that
he got anemia, hemolytic anemia where the hemoglobin drops
very low. So he got that and they diagnosed him with hemolytic
anemia. So he had two diagnosis.
In Chicago, they’re trying to find some—because
he got a tumor—so they’re trying to find what’s
the problem. So actually, everytime he had a different problem
he got a different diagnosis. The first two diagnosis were
in New York and then we moved to Chicago. So he got a tumor
on the left chestal wall. And also they find that he always
gets salmonella, which is a bacteria. Always. They gave very
strong antibiotics. Normally two weeks for normal people it
would be cleared up, but he would get it again back in his
blood.
The doctors said inside it is cancerous. But they said that
it was kind of inside—isolated—so they could remove
it and it was no problem. They just very strict and they say
he needs a CT scan every three month at that point. So after
that we move to Delaware.
So there was no diagnosis.
So we also see an immunologist.
He’s maybe also famous in that field, so we saw him
several times and he also did lots of testing. And we said,
‘What is the problem?’ And he said definitely
some kind of immune system problem, but so far they couldn’t
find what exactly the name is. They couldn’t find exactly
what it was. He said if you really want a name, you can call
it Situ disease, use his name. So from that point we just
beginning to use immune deficiency.
So it’s kind of like at every age he has something.
Normally he has a most normal life, he goes to school, and
I just always think maybe when he gets older his immune system
will get better. But he always have salmonella in blood or
lymph node—he always have a swollen lymph node, or maybe
gum infection, it’s swollen and they find that also
is salmonella. He got some bone pain [in leg] and some abscess
[on head], they find that is also salmonella. Salmonella it
seems they can never treat it. He’s on antibiotics,
but he always has these things.
All of this keeps happening like every month, or every three
months, always a little this or a little that, he always having
surgery, take that lymph node out, or ya know, just, and then
doctor just told us he feel his immune system is getting worse
each year he do tests and they are getting worse.”
She explains the different doctors and treatment options
that they had to chose from before settling on Duke’s
Dr. Joanne Kurtzberg who would perform a cord blood transplant.
She continues to talk about preparations for the transplant
at Duke:“They only left 25% percent spleen, because
they explain that will prevent rejection in engrafting. They
do it to some patients, but they feel Kevin needed that. So
actually, they think a lot for Kevin, but he results still
reject.
But we just don’t know, it’s so hard. They didn’t
start growing. It’s very slow, and the doctors have
different opinions and some of them say, oh 1%, there’s
no hope for that. But Dr. Kurtzberg say, she see one patients
after six months form 1% grow to 20% or something like that,
so she’s trying hard to hold on to Kevin’s 1%,
but actually 1% isn’t really 1%, just tiny little.
So before he got the fungus infection, we just waited, waited.
Everytime doctor Kurtzberg thought we just have to wait, maybe
we can see it in the blood. So, she’s really hoping
a lot, but different doctors have different feelings. She
always say he have a chance, but I think it’s hard to
hope that way. But she’s hoping, she put in high dose
of Cyclospron to help the little donor cells grow more, but
otherwise that one suppress his immune system, so it’s
kind of hard to balance it.
So when he got a fungus infection you can’t really
tell if they suppressed it too hard, or if his underlying
problem comes up, it’s really hard to tell. But this
is his problem and it’s hard to balance. So at that
point he’s really high dose of Cyclosporin. That medicine
is really suppressing his immune system. So she kept him on
a little bit, so she may have her own about Kevin.
Actually, at the waiting time, I kind of worry, and are
we going to go home soon? So we didn’t think about other
things, you know, and feel a little bit relaxing. I go swimming
everyday, and it’s just waiting and what can we do until
he has these symptoms, seizures, and it’s like no…We
still feel less hope before, because for a long time it was
1%. But when doctor said there’s still hope there, you
just put that word in your mind, still hope there, and keep
going, but actually, I feel, I don’t know. My husband
just always follow Dr. Kurtzberg’s feelings, well, there’s
still hope then we should…after fungal infection they
did another 100 days testing and the doctor came to us and
say, no more donor cells, no more. My husband just kind of,
ohhh, so sad. And I think, why you feel so sad, I always feel
like it just nothing! He just really stick on Dr. Kurtzberg,
hope, hope, hope. But finally when the doctors see nothing,
he just kind of…dropped his heart, was sad. That’s
kind of before fungus his donor cells come.
And actually waiting after the fungus, we really got tired.
Last time it was different. Last time you’re kind of
preparing. You’re preparing for worse, you’re
kind of, bahhh, and then so scared, so emotional, and so tired.”
* * * * *
The next time that I call Helen, she invites me to lunch
at a Chinese restaurant that she wants to try out. She insists
on picking me up on campus, but when she comes she is alone;
Kevin is not in the car. “He wasn’t ready when
I have to leave, so he stayed home,” she tells me. “He
wanted to make sure that you were coming back home with me,
though. I told him I thought you would. I don’t know
if he should go to a buffet restaurant anyway because of the
germs.”
Over lunch, we talk about Chinese food, and which dishes
I like and dislike. Helen grows excited as she realizes that
I really am enjoying the food and not just telling her so
to make her happy. We talk a lot about religion, and her experiences
in China under a communist regime, “You were not allowed
to believe in God there,” she says. “When we moved
to the United States we became Christian and it feels so good
to have faith in God.” They met many of their close
friends in Delaware through their church. They don’t
go to church very often in Durham because they don’t
feel like they are part of the community. They miss their
own congregation. “We have such good friends at home.
We are so lucky.”
Helen tells me about when she was a journalist for an economic
magazine back in China. “It’s not like here. You
can’t write anything you want. You have to be careful,”
she says. I talk about the projects I am working on as an
intern at Duke Magazine. As I read Kevin’s website later,
I find that Helen has written about me that day, “We
can have more time being together now and we both seems have
a lot in common since I was a journalist of a magazine in
China 15 years ago. I enjoy feeling young again.”
I offer to pay for the meal, but Helen insists happily:
“Oh no! It’s fun for me because I don’t
have anyone to hang around with down here.”
We drive back to their townhouse to find Kevin playing a
video game and David working in the back bedroom. Kevin smiles
and says hello, but as usual is too enthralled in his game
to talk with me.
“I have something to show you,” Helen says as
she rummages through a pile of papers on the dining room table.
She pulls out a Chinese Christian Gospel magazine and sits
down on the couch, motioning for me to join her. “I
wrote an article in here,” she explains, and begins
to translate it for me, “Random Thoughts on Thanksgiving.”
It is about how thankful she is for Kevin, for God, and for
all of the people who support them in these tough times. She
explains a little about Kevin’s illness, and how they’ve
been coping with it. Thanking God for the gift of Kevin, she
writes that such a small life can bring so much joy.
As she is reading to me, Kevin sets up a footstool at the
coffee table in front of us and sits down to draw a picture.
When Helen finishes the article, she looks up at Kevin, who
has been stable for some time now, and sighs, “Oh, sometimes
I just feel, life is so wonderful.”
* * * * *
I get a call from Helen a few days later, “Dr. Kurtzberg
is letting us go home for 10 days!” She is over-joyed.
“I’ll call you when we get back,” she says.
* * * * *
The day after they are scheduled to return I call their
townhouse in Durham to hear about the trip home. “Ummm…it
was great until the end, then very scary.” Helen is
tired and tells me to check their website journal:
“We're back from our 10 day home visit, it's an exciting
and happy experience for Kevin and us, but ended with a scary
incidence.
Things started great, as you can image. Kevin was so thrilled
to go back and to play with his best friends, everyone was
having such a great time! Kevin was also able to catch the
birthday party of one of his best friends Owen (they did move
it one week early), he also went to his school to meet his
second-grade teacher Mrs. Keech and old classmates. We of
course also got visits from many of our friends and etc, things
couldn't be better! We're so fortunate to have so many considerate
friends!
Then Kevin started to have headache Wednesday, we were certainly
a little concerned, considering his fungal infection in his
brain. So we paged Dr K, she said we could either go back
or just give him Tylenol and keep an eye on him. Since he
looked ok besides this, we decided to stay. The pain seemed
to be controlled by Tylenol and he was able to do normal things,
we did cut down his activities as he seemed a little easier
to get tired, and also vomited occasionally. Then Saturday
night the scary part happened. After he already went to bed
at around 9pm, Helen noticed that he waked up and just looked
around, she called him but he was not responding, Helen got
very scared and called David upstairs. We all held him and
called him, but he was just not responding, and just kept
looking around, kind of like a retarded person (sorry for
not finding a better way to describe), we thought his brain
might be all messed up or something and got all panic, it
was such a scary moment! We did then managed to call 911 and
paged Dr K. After about 10 minutes, Kevin suddenly vomited
uncontrollably and then his mind came back to him and he could
response to us when we kept asking him whether he know this
is mom and dad. Only by then we took a deep breath and realized
that he might just had a seizure.
Then ambulance came, we went to Emergency Room at DuPont
Children's hospital, Dr K talked with them on the phone already
and requested a blood test and a CT Scan. The CT Scan did
show he was having more inflammation in his brain so they
increased one medicine to control that. They felt he would
be ok for our 6,7 hour drive back to Duke Sunday and we were
able to leave ER at around 2am. We felt so lucky that things
were not nearly as bad as it looked in the beginning. We especially
felt fortunate to have a good doctor like Dr K who can be
paged any time and worked very late to get the problem under
control, even from so far away.
We're also very thankful to our friends and also a little
guilty. Just when we were in panic mode and trying to reach
911 and Dr K, our friend Shen Jian called us and also got
the impression that things were very bad, she then called
many others to ask for their prayers and whom in turn called
many others. Shi Xian & Wan Fang even came to the emergency
room to bring us some food and comfort us until late night.
Sorry for the disturbance we caused and thank you so much
for everyone's prayer and emotional support, we're very grateful.
Now we're back to Duke, Kevin got another CT Scan today
and will see Dr K tomorrow. The fact that the infection is
getting worse is certainly not good news, but we feel ease
with the good doctor and the best care we are getting. It
is probably going to be another round of long fight but we
will be ok.
Thank you everyone! We can't go so far without everyone's
support!”
* * * * *
During my last visit to the Situ’s townhouse, Kevin,
and Helen, and I play a board game together. I’m surprised
that Kevin lets me play, since he normally likes to play alone—he’s
used to being isolated. Today, his face seems a little less
swollen and his energy level is high. He instructs me how
to play, giggles, and tries to beat us. Helen ends up winning,
but he doesn’t seem to mind.
* * * * *
As I am finishing this project, I am called home for the
funeral of a five-year-old girl that died after battling a
brain tumor for 4 _ years. Thinking back to the many days
and weeks that I spent with her during her fight to survive,
I am reminded of the incredible strength and love that is
required of a family to support and care for an ill child.
Having been away from the Situ family for a few weeks now,
I check their website for an update to find a book that Kevin
has written and illustrated about the love of his family during
these years that have been so filled with illness, waiting,
hope, and love:
My Dad’s White cell
By Kevin Situ
To my Mom and Dad (with red heart)
(Page 1)
Hi! My name is Kevin. I’m going to tell you how I
got white cells from my Dad. Well, first my Dad needs to get
two lines. The surgeon will put the line in my Dad.
(Page 2)
After he got his lines, he was very tired. I bet it was
the sleepy medicine. He got the two lines two times! One was
when I doing my transplant and another one was when I got
fungus. The first time my Dad got his lines, the lines didn’t
look good. But the second time was a little better.
(Page 3)
To get my Dad’s white cell, it is hard work because
he will need to be pheresed and my Dad always gets tired after
that. My Mom worries about my Dad getting tired and weak,
but I feel thankful because the white cells make me more active.
(Page 4)
When he is doing the pherese, the machine is so cool. It
looks like a washing machine. I saw it once. The machine takes
blood through Dad’s line and the blood spins inside
the machine. The blood will separate to red cells and white
cells in the machine. Then the nurses will keep the white
cell and give the red cells back to my Dad.
(Page 5)
My Dad pherese twice a week and I get white cells six days
a week except for Sunday.
When I get white cell I get tired too because my nurse gives
me Benadryl.
(Page 6)
I’m very thankful for what Dad and Mom did for me.
They love me so much and making me happy and helping me get
well.
(Page 7) The End
(Page 8) Kevin Situ, 8 years old, Gets
white cell
(Page 9) Dad, 37 years, work on his
computer for MBNA
(Page 10) Mom, 38 years, cooks yummy
food
(Page 11) Kevin Situ sleeping getting
white cell
(Back cover)
Kevin likes to draw and play. He is
kind of sick. He is in North Carolina to do his transplant.
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