Save Me and I Will Be Saved
by Riley Winchester
It was late in the morning on a day in late December of 2010. I was in a waiting room with my mom at The Johns Hopkins Hospital Pediatrics Center. One of the walls of the waiting room was made entirely of windows, and natural light lit up the room. Outside was the scene of a normal Baltimore winter: mounds of muddy snow pushed up against walls and corners; the wind was whipping and could be heard through the windows.
I was scanning through the most recent edition of Sports Illustrated Kids and I remember thinking two things. The first was I wished the magazine was the regular Sports Illustrated, not the kid’s edition, because I was thirteen years old and had been reading the regular editionfor over four years now. The second thought was of back home. I wondered if I would have been playing in a basketball game later that day if I was home, 660 miles back home in Michigan.
A nurse called my name and I stood up to walk into the back rooms where I was to have blood work done and tests run to see if I was right for what I was getting into. It was when I stood up and made my way toward the nurse that I saw what had been around me. It was like I was in a painting, but not a Matisse or a Monet. There were kids—all younger than me—in wheelchairs, with breathing tubes, with IVs hooked into their arms. I saw heads with the fuzz of peaches, smooth heads with no hair, skinny arms and legs, bony faces, and jaundiced eyes.
Through this painting I walked, and I walked with all of my health. I had my hair, a full head of it. I had tissue and flesh covering my bones. I had no machines fixed into me, nothing external needed to provide me with life. I walked; I wasn’t rolled around by someone else’s push. My body was healthy, but I was scourged with guilt.
Over the course of forty years Edvard Munch painted six different renditions of The Sick Child. Each time, the content of the picture remained the same but the style changed. The picture is of a young girl, propped up on a white pillow, on her death bed. She is staring at a dark curtain. The curtain, it’s believed, is a symbol of death. By the young girl’s side is a woman, presumably the girl’s mother, who is so distraught and grief-stricken that she can’t bear to look at her dying child, so her head is down, looking at the floor.
The original version was painted with mostly whites, grays, and greens—giving it a dark hue and a somber tone. When Munch debuted the painting at the 1886 Autumn Exhibition in Christiana, critics and spectators dismissed it. They said it looked unfinished and disparaged Munch’s abandonment of line. The hands of the grieving woman, according to critics, lacked discernible details and looked like blobs. In his defense, Munch said, “I don’t paint what I see but what I saw.”
What Munch saw, and what inspired The Sick Child, was the death of his fifteen-year-old sister Johanne, who was only one year older than Munch at the time of her death in 1877. She died from tuberculosis in the Munch family home, and the memory of his sister perniciously losing her health, and ultimately her life, stayed with Edvard Munch.
Munch became obsessed with the picture, and he continued to rework its aesthetic for most of his life. He abandoned Impressionism for Expressionism, and every successive version became brighter. Munch never explained the change in brightness, but he said Expressionism allowed him to express what really stirred his mind. When writing about The Sick Child late in his life, Munch said, “It was a breakthrough in my art. Most of what I have done since had its birth in this picture.”
I was at Johns Hopkins to donate, not to be treated. My dad was suffering from Paroxysmal nocturnal hemoglobinuria (PNH) and had been for as long as I could remember. PNH is a rare disease found in the red blood cells that causes hemolytic anemia in its sufferers. Hemolytic anemia is when red blood cells are destroyed at a rate much faster than they are produced. Over time this is deadly, and the average life expectancy after a PNH diagnosis is only ten years. My dad’s ten years were approaching. But his ten years were approaching at an auspicious time.
My dad had been on the bone marrow donor registry for over four years and couldn’t find a full-match donor. Fortunately, however, haploidentical bone marrow transplants were gradually becoming more accepted in the medical field. In haploidentical transplants, the bone marrow of a half-matched donor is used. Because of developments at the Sidney Kimmel Cancer Center, half-match donations were now safe and came with very few side effects. The Johns Hopkins Hospital was the first American hospital to perform haploidentical transplants, and at the time it was the only American hospital to perform them.
The half-match in a haploidentical transplant is typically a family member of the bone marrow recipient. For my dad, this meant he would be receiving bone marrow from either his mom, his dad, his brother, one of his two daughters, or me—his only son. In the fall of 2010, the other potential donors and I were tested to see whose DNA closest matched my dad’s. Our blood was drawn in an outpatient lab at a Spectrum Health Hospital in Grand Rapids, Michigan, and was then shipped to another lab to be examined. I remember thinking the whole process felt very casual and almost mundane. We filled a vial, no bigger than the size of a fat crayon, with blood, and that was it. A life was at stake and one of us would be responsible for it. But it didn’t feel like it.
The tests came back and I was the closest match. Years later, I learned I was always going to be the match and the tests were done only to ensure my DNA wasn’t an anomaly and somehow severely different from my dad’s. In haploidentical transplants, the ideal half-match is young and healthy, as the recipient should receive the healthiest bone marrow possible. This eliminated my dad’s parents and his brother. Also, the donor should be the same sex as the recipient, otherwise hormonal issues can arise. It’s possible to do cross-sex transplants, but they’re avoided if they can be. This eliminated my sisters, leaving only me left. Yet I didn’t know any of this at the time, so I was surprised when I learned I would be the donor. In the end, however, it was always going be me and it was always going to be at Johns Hopkins.
On my way to the nurse, a young girl in a wheelchair stole my attention. She was maybe five years old, and she wore nothing to cover her bald head. She had on a little purple dress, and in her hand was a stuffed monkey, which she held closely. A doctor was talking to her and her parents, who were standing beside her. The doctor knelt down and asked the girl if it would be okay if she came back on Christmas Eve for more testing. She didn’t hesitate. She said, Yes! And she was happy to come back whenever, she said, because all her friends were there. Her parents didn’t object, and an appointment on Christmas Eve was settled. As I approached the nurse, she greeted me. I followed her through a set of doors, leaving the waiting room behind, and down a hallway.
After a standard checkup of my height, weight, and blood pressure, I was sent into another waiting room where I was to wait until the doctors were ready to run blood tests on me. This new waiting room was designed specifically for kids. There were Rubbermaid tubs filled with Legos and other toys, small tables—with the tops brightly graffitied and etched into—that had coloring books and colored pencils on them, puzzles, picture books, and a TV with an Xbox 360 plugged into it. I turned on the Xbox and the TV as I waited for my name to be called again. I hadn’t yet started playing a game when a boy, around seven or eight years old, walked into the room. He wore a hand-knitted hat on his head and had a bandage on his cheek.
Before him or I said anything, he picked up an extra controller that had been on one of the small tables. I asked him if he wanted to play with me, and he shook his head yes, but he remained silent. It was a hockey video game, and I set it up to where we would play each other. In the game the puck dropped, and we started playing. No goals were scored, and very little time in the game had passed, when a new nurse came in and called my name. I paused the game and stood up to leave. The boy finally spoke, and he asked me if I was leaving. The question halted me. I wasn’t prepared; all my mind could think of was the truth. I could make no excuse or give no palliative answer. I told him, plainly, I was sorry and that I had to leave.
Bone marrow is spongy tissue found inside the bones that produces hematopoietic stem cells. Red blood cells, white blood cells, and platelets develop out of these stem cells. Sometimes, hematopoietic stem cells turn cancerous or defective, slowing down or completely stopping the life-providing function of bone marrow. A bone marrow transplant is then needed to replace the bad bone marrow. It wasn’t until 1956 that a bone marrow transplant was successful. Doctors had been attempting transplants since the early 1900s, but Dr. E. Donnall Thomas was the first to perform the operation successfully. He extracted bone marrow from a healthy boy and gave it to the boy’s twin, who was suffering from leukemia.
The process hasn’t changed much since Thomas’s successful transplant in 1956: Bone marrow is extracted from the donor’s hip bone using bone marrow harvest needles—which closer resemble a drill bit than a needle—and then transplanted into the recipient’s bloodstream. It’s a safe process for the donor. Health concerns usually only arise in the recipient after the procedure, when their body is adjusting to the new bone marrow.
Despite knowing the safety and efficacy of the procedure—doctors from Michigan to Johns Hopkins had all informed me of it—I had feelings of trepidation when I saw the needles that would be stuck into me, that would be driven into my hip bone, and that would suck the healthy marrow from me. But I was already at Johns Hopkins, I reminded myself; there was no going back now. And I had seen and been surrounded by so many hurting people, hurting kids, whose bodies were determined on destroying themselves from the inside out. It wasn’t fair to them. I had to do my part at Johns Hopkins.
The bone marrow transplant happened in early January 2011, and it was a success. After the transplant, when the anesthesia wore off, I woke up miserable and confused. My vision was sandy, it felt like a steel band was wrapped tightly around my head, and my mouth was so dry and coarse that I wondered if a small rodent had crawled into my mouth and died while I was unconscious. There were thick, bone white sheets hanging from the ceiling, separating me from the others who were also recovering in the same room.
The first thing I heard was the voice of a young boy who was talking to his dad. From the sound and timing of his voice, I could tell he was in the bed next to mine, to the right. He told his dad he wanted pancakes and he asked him when they would be able to eat them next. The dad promised that as soon as the boy recovered and was ready to leave the hospital, the first thing they would do is go out and eat pancakes. Shortly after he said this, the dad made the promise again, to make sure the boy knew.
I was supposed to lie in the hospital bed and recover for only two hours, but I stayed for over six. The surgery was harder on my body than I anticipated, than even the doctors anticipated. My body was weak, and every time I tried to stand and walk—walking was the true test to see if I was ready to leave, I was told—my legs gave out and I had to be caught by a nurse. To use the bathroom, I had to wrap my arms around a nurse and my mom and be guided to the toilet. At the toilet, I had to be held up by my mom because my legs couldn’t support my body.
As the hours went by, a new nurse was assigned to me—the original nurse’s shift had ended—my stomach started accepting food, things in my head became clearer, and my legs felt strong again. Finally I was able to walk on my own, and the nurses said I was okay to leave. I held onto a four-legged walker and shuffled, my mom beside me to catch me if my legs failed again. When I left, I could still hear the boy talking to his dad, but he was no longer talking about pancakes.
I spent many hours in The Johns Hopkins Hospital Pediatrics Center. I watched kids go into rooms to receive treatment, have their bodies prodded with needles and filled with radiation, swallow prescribed pills at calculated intervals throughout the day. During these times, I often found my mind stuck on a passage from a book I had read shortly before I left for Johns Hopkins: The Catcher in the Rye. The passage is from when Holden tells his sister Phoebe about a recurring dream he’s been having.
“Anyway, I keep picturing all these little kids playing some game in this big field of rye and all. Thousands of little kids, and nobody’s around—nobody big, I mean—except me. And I’m standing on the edge of some crazy cliff. What I have to do, I have to catch everybody if they start to go over the cliff—I mean if they’re running and they don’t look where they’re going I have to come out from somewhere and catch them. That’s all I do all day. I’d just be the catcher in the rye and all. I know it’s crazy, but that’s the only thing I’d really like to be.”
I wanted to be the catcher in the rye at Johns Hopkins. I wanted to stop all the sick kids before they went to receive treatment. I wanted to tell them they didn’t need it because I could help them. I wanted to give my kidneys to the kids with Wilms tumors. I wanted to give my liver to the kid with hepatoblastoma. I wanted to give all my bone marrow to the kids with leukemia. I wanted to give my eyes to the kids with retinoblastoma. I wanted to give my brain to the kid with brain tumors. I wanted to give my heart to the kid with hypoplastic left heart syndrome. I wanted to give myself to every sick kid until there was nothing left of me—until there was nothing left of me but there was all of them.
And with every kid I would say, Take it, take this! You can do more with it; you will do more with it! But I couldn’t. Like Holden, all I could do was think about it. All I could do was think and not do.
I left The Johns Hopkins Hospital and was pushed through Baltimore-Washington International Thurgood Marshall Airport on a wheelchair, because I still couldn’t walk at full speed or for long periods of time. I left with my grandparents who had also been staying at Johns Hopkins. Our seats were upgraded to first class because of me. One of the airline workers saw me, a young teenager in a wheelchair, with two elderly people and she kindly told us our seats were now in first class. I was able to walk onto the plane, so I walked through the corridor that connected the terminal and the plane and found my seat in first class.
For a strange reason that I cannot explain, it felt good, at the time, to leave Johns Hopkins having experienced some pain and discomfort. Perhaps it was a combination of guilt for being healthy and feeling that I had done nothing for the kids, that I had even abandoned some, who I had so badly wanted to do something for. Of course, I couldn’t have done anything for them, but even at thirteen—an age where I should have known this, and I think I did know this but still told myself differently—I felt that there was something I could have done, even if I didn’t know what it was.
But I had done something at Johns Hopkins, and it was the reason for my pain and weak legs and fatigued body. I donated bone marrow to my dad; his PNH was cured and he was healthy. My grandparents still had their son, my mom still had her husband, and my sisters and I still had our dad. None of that would have been so if it weren’t for what I had done, but I wasn’t thinking about that.
Abraham Jacobi was born to impoverished parents in a small town in central Germany in 1830. Jacobi was a sick child from birth. In fact, he was so sick and his parents were so poor that they were advised by a doctor to not spend any money on treating the infant Jacobi, because there was little chance he would survive into adolescence. His parents listened to the doctor, but Jacobi survived. In his early twenties, Jacobi earned his Doctor of Medicine but shortly after was arrested for his radical political beliefs. After two years in a Cologne prison, he escaped and immigrated to New York, where he set up an affordable pediatric clinic.
Jacobi found success in America. His clinic was visited by many and he gained popularity in the medical field as both a physician and a pioneer in the field of pediatrics. In 1859, he published Midwifery and Diseases of Women and Children—the first medical text to take an earnest interest in treating sick children. Jacobi was one of the first physicians to understand the importance of treating sick children differently than sick adults, stating, “They are not merely small adults.” He was also the first physician to emphasize bedside pediatrics. Before Jacobi, the treatment of children was often emotionally distant due to high mortality rates among sick children and an overall vein of pessimism in pediatrics—losing multiple patients a week was normal for a pediatrician in the nineteenth century.
By the end of his life, Jacobi had written over 4,000 pages, collected in eight volumes, on pediatrics. He wrote on the etiology of diseases in children, the treatment of children, the philosophy of the pediatrician, and the necessity of pediatrics. In addition, he opened pediatric wards in hospitals across New York, and he served as the first Chair of the Section of Pediatrics of the American Medical Association. Today, Jacobi is known as the Father of American Pediatrics.
But even the Father of American Pediatrics could only do so much for his patients. The first pediatric disease Jacobi became interested in was diphtheria—a bacterial infection in the nose and throat—and he’s credited with inventing the indirect laryngoscope to examine children for the presence of diphtheritic membrane. Jacobi was considered an expert on the disease by his medical contemporaries. But at the age of eight, Jacobi’s only son, Ernst, contracted diphtheria. And, for Jacobi, there would be no saving Ernst. By the time the disease had been discovered in him, it was too late. Ernst Jacobi, the son of Abraham Jacobi, died at eight years old.
We landed in Grand Rapids and I was wheeled through Gerald R. Ford International Airport in one of their provided wheelchairs. Every time I caught someone’s attention and they looked at me for longer than a second with a stare of sympathy, I wanted to stand up. I wanted to stand up and tell them I was fine and I didn’t need them to feel bad for me and that there are kids all over who you should feel bad for but I’m not one of them. There are kids who you should feel bad for and I was with some of them but I couldn’t do anything for them.
I was wheeled up to the doors of the airport where there was an area to drop off the airport’s wheelchairs. I found a spot for my wheelchair and left it there; I was eager to abandon it. It was early in the morning, around 4 a.m., and outside everything was bright and lit up by streetlights and headlights from cars and buses. My grandma offered to help me walk as we looked for the car. I told her I was fine and I could do it on my own.
In the car, going south out of Grand Rapids, I started to feel different. It’s a source of stress and physical exhaustion to be in an environment like I was in, and now that I had been out of it for some time, I could feel myself recovering. I didn’t think I left Johns Hopkins a victim of any kind or that I had been unfairly exposed to something I shouldn’t have. I thought I had seen something, something unpleasant, and there were things that could come of it. What they were, I didn’t know, but I knew they were somewhere.
If I knew then what I know now, I would have known what those things were. That no matter what you do, you’ll always wish you had done more or think you could have done more, so it’s best to find pride in the things you have done and be kind to yourself. That hurt isn’t transferred like currency, and you being hurt won’t abate anybody else’s hurt. That you can’t make the world better all on your own, but you can start small, do what you can, and hope it makes your part of the world better. That when you sit and try to think about the big, profound things, your mind will get hung up on the little things like a stuffed monkey or a hand-knitted hat or pancakes, and then you’ll realize those were the big things all along. And a lot of what you learn will sound familiar, and that’s because it is; it’s not new, they’re old platitudes. But until you find something real to attach them to, they’ll never make any sense.
On the way home, we stopped at a McDonald’s drive-thru because we hadn’t eaten since we left Baltimore and no other restaurants were open. We waited a long time for our food, very long for being the only customers. It was quiet in the car—there was no radio playing and we were too tired for small talk. When our food finally came out, my order was wrong, and my grandpa said his coffee was cold. But none of these things seemed important or worth talking about, not now.
Riley Winchester lives in Grand Rapids, Michigan. He recently graduated from Grand Valley State University, where he earned a B.A. in History. His work is forthcoming in Waymark.