Lessons From A Life Interrupted

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.

So 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.