by Alex Ko
“Boys, I need your help,” I remember Mom telling us. “We all need to chip in around the house to keep things running.”
Matt and I started doing more of the chores, the cooking and the cleaning. John did all that and took on the job of taking care of Matt and me—and continued working at Fareway grocery store to bring in money.
This was when the dance studio really became my second home. I was there nearly every day, sometimes until ten o’clock at night. It was my safe haven, the place where I could go to forget about Dad’s cancer. In Michael’s studio all I thought about was dance: the rhythm, the way my body flowed with the music, the single-minded drive to learn a step so that from the tips of my toes to the ends of my fingers it was perfect. Everything else in life was messy and complicated, but here, things could be perfect.
Dance was the happy place I went to, in order to drive all the other thoughts away. Just being physical made things seem better. Talk to any athlete, and we’ll tell you the same thing. If we’re sad, or upset, or just feel like we’re completely stuck and can’t see a way forward—we get up and move. It won’t change the world, but it might change the way we feel about things. And once we feel different, we can change our world.
But even at the studio there were problems.
“We have to save more money,” I remember Mom telling John and me one day. “We’re going to have a lot of medical bills.”
Mom had great insurance through the ACT, but even with a good job, it was hard to raise three boys, pay for Dad’s treatment, and keep a roof over our heads. Much as I loved them, it became harder and harder to justify paying for dance lessons. And it wasn’t just the lessons: there were the costumes, the travel costs, the competition expenses. It all added up.
Thankfully, Mom had a brilliant idea.
One day after rehearsal, she asked Michael if they could talk. Michael was very close to our family, and she could tell something had been wrong for a while.
“Sam is sick,” Mom told Michael. “He has cancer.”
“Oh, Tammie,” Michael said, putting her hand on Mom’s arm. “I’m so sorry.”
“Thank you,” Mom replied, nodding slightly. She squared her shoulders and took a deep breath. I knew what she was about to do was hard for her, and I knew she was doing it for me. I took her hand in mine and squeezed it.
“Money is a little tight right now,” Mom continued. “Is there any way I can help out around the studio so the boys can continue taking classes?”
“Of course!” Michael responded instantly. “You know I love having them here. Don’t worry—we’ll make this work.”
Soon it was settled. Mom would help Michael with her computers, her spreadsheets, and the costumes. In exchange, we would get a full scholarship for our classes.
This was good because Dad’s cancer was worsening fast. I didn’t know a lot about liver cancer before Dad was diagnosed, but I soon found out that it’s a pretty bad kind. Only 14 percent of people survive more than five years after being diagnosed. The best chance of surviving is to have a full liver transplant, but that means finding a compatible donor, which can take a while. A liver isn’t like a kidney, which people have two of. Everyone has one liver, and they need the whole thing, so we were waiting for someone with a healthy, compatible liver to pass on. It made me realize how important it is to be an organ donor. Donors literally save lives. As soon as I’m old enough, I’m going to register to become an organ donor. I know it’s what Dad would have wanted.
I became totally focused on Dad getting a liver transplant. I thought that as soon as he had a new liver, he would be fixed—like when you put a new battery in a remote control. I know that’s naive, but I wanted to believe there was an easy solution to all our problems. So when the call came in early January telling us there was a liver waiting for Dad at the hospital, I was overjoyed. Finally, I thought, our lives would go back to normal.
I was so wrong.
Liver transplant surgery is really delicate. One inch in the wrong direction, and who knows what they’d be cutting through? They told us that Dad’s transplant could easily take twelve hours, so we packed up everything we thought we might possibly want: games, movies, books, snacks, you name it. We even had a portable TV. We were ready for the long haul.
When we got to the hospital, they rushed Dad off to get ready for his surgery. Mom, Matt, John, and I settled into the waiting room, where we waited . . . and waited. Twelve hours went by before someone came to see us.
“I’m very sorry to tell you this,” said Dr. Katz, our surgeon. “But Sam isn’t going to have a transplant today.”
We were so confused, I felt like crying. No one told us this beforehand, but here’s how liver transplants work: After you’re diagnosed, your name goes on a list. Everyone on the list is checked and double-checked to make sure they’re healthy enough to survive the transplant. Unlike with other organs, it doesn’t matter how long you’ve been waiting—the only thing that matters is how much you need the liver, and how likely you are to survive the surgery. In a way, Dad was lucky, because he was pretty healthy (other than his liver), and he desperately needed the transplant. So he shot right to the top of the list. That’s why it was only a few months after his diagnosis that he got called in for surgery.
But there are so few healthy livers available that anytime someone is up for a transplant, the doctors always bring in a backup recipient, in case something goes wrong or the first person fails their final physical. If they didn’t have a backup person prepped and ready for surgery, the donor liver might not still be viable by the time they find someone else. They don’t tell you that you’re the backup, because they’re worried you might not take it seriously if they did.
This time, Dad was the backup. I was crushed, but I tried not to let it show because I knew it was worse for him. When they wheeled him back to us, he was quieter than I’d ever seen him, as though his mind were far away.
“Soon,” Dr. Katz told us. “You’re at the top of the list now.”
Twelve days later, the hospital called again. This time, Dr. Katz assured us, it was the real deal. So we repacked our portable TV and headed back to the university.
“Good luck,” I told Dad as they prepared to wheel him away. He held my hand gently.
“I don’t need luck,” he said. “Remember, everything is going to be okay. I’ll see you when I’m done.”
Outside the hospital windows, it was gray and chilly. January in Iowa can be viciously cold. But inside, I’d never felt so warm.
“This is your father’s best shot for beating the cancer,” Dr. Katz had explained. As we sat in the waiting room, with its bright fluorescent lights and soft-carpeted floors, I imagined what it would be like to wake up tomorrow and know my father was better. It sounded like a dream come true.
But as the hours passed with no word from the doctors, I grew more and more worried. What if something had gone wrong? We hunkered down in the waiting room like a city under siege. I tried to play a game, or read a book, but I couldn’t concentrate on anything. It grew dark outside, and the wind moaned against the bare trees. All the bad omens I’d looked for on the day of Dad’s diagnosis were here now. I just hoped they didn’t mean anything this time.
Matt and I napped and ate and did our homework. Sometimes we talked, but it was hard to keep a conversation going when we all knew what was happening in the operating room. Just about the only thing I could pay attention to was The Princess Diaries, one of the few movies we’d brought with us. It was just the right amount of mindless fun. Matt and I must have watched it three or four times that day.
Finally, after ten hours, Mom couldn’t take it anymore. Before I was born, she had interned at the hospital during her PhD program, and she still knew people in the administration. After a bunch of frantic calls and a whole lot of waiting, she got some answers.
“They’re having trouble with the incisions they need to make to do the surgery,” an administrator told her. “And there
have been some minor complications.”
“What do you mean?” Mom asked.
“The donor liver is unexpectedly large, but everything’s all right,” the administrator hurried to assure us. “Dr. Katz has him open on the surgical table, and he’s working on it.”
My heart nearly stopped. I couldn’t believe what they were saying. My dad—my happy, loving dad—was on a table somewhere, cut open, empty. Unless they got the new liver in fast, they’d have to put his old one back in, which meant the cancer would have more time to spread. Every day he spent with his old liver inside him brought him closer to death. If I could have given him mine, I would have.
Mom continued talking on the phone, and we found out it was even worse than we had imagined. Dad had an old scar on his abdomen, from a previous surgery, and it was right where they needed to make the incision for the transplant. But scar tissue is tough, and it made the entire surgery that much more difficult (and painful, and harder to recover from).
“He’ll be in the O.R. for at least a few more hours,” the administrator finished. “At least.”
In the end, Dad was in surgery for eighteen hours. But it was a success. The liver ended up fitting, though just barely. Because of the scar tissue, Dr. Katz had to cut Dad up and restitch and restaple him numerous times. The IV that gave him blood transfusions through the arteries in his neck kept collapsing, and they had to redo it over and over again. By the time they were done, he was like a pincushion—and he’d received nearly six liters of blood. That’s as much as the average adult male has in his entire body. In recovery, he looked almost Frankenstein-ish. We nicknamed him “Liver Bumpy,” because you could literally see where the big new liver protruded from Dad’s otherwise skinny frame.
To this day, I don’t know where that liver came from. I don’t know the name of the person who gave it to us, or what their life was like, or who they left behind. I don’t even know if it was a man or a woman. But I will be in their debt forever. Thank you, whoever you are. Thank you. You didn’t just give a profound gift to my dad, you gave a gift to our entire family.
Even once the surgery was over, it was a long time before our family returned to normal. In fact, now that I think about it, we never really did. The next two years would bring one big change after another. My life wouldn’t have any real “normal” or sense of routine until I found myself on Broadway, which is about the most abnormal normal I can imagine.
But Dad had a long road ahead of him, and I would be alongside him the entire way.
Chapter 6
The Ride
“Are you sure you’re ready for this?” Mom asked as she watched Matt, John, Dad, and me buckle our helmets on. She couldn’t hide the worry in her voice. “I mean, it just seems awfully soon.”
“I’m fine, Tammie, I promise,” Dad said as he dropped a water bottle into his backpack. It was a little after nine a.m., the sun was shining brightly in a perfect July sky, and we had an awesome day planned.
It was a little over a year after Dad’s surgery. His recovery from the transplant had been difficult. For the first week, his condition was so touch and go that he couldn’t leave the intensive care unit. After that, he had another week in a regular recovery room before he could actually come home, and even then, he still wasn’t very strong. His body had been cut open and torn apart. He almost seemed sicker than he had before the transplant, because he was so fragile. The first time he left the house for a walk, my mom had to support him the entire way—and they only went to the stop sign at the end of the block. But week by week he got stronger.
Immediately after his surgery, a steady stream of relatives came to stay with us and help out. For weeks at a time, my aunties Alicia, Kitty, and Kristin lived in our spare bedroom and did everything from grocery shopping to taking Dad to his doctor’s appointments. And they weren’t the only ones. Our neighbors came by with plates of food and offers to help with yard work and cleaning. Dr. Katz had become a good friend of the family, and he often came by to check on us, as did our neighbors, Joe and Shirley Abdo. Dmitri and Marina Trouch, Michael Kohli, and all the other people we’d met through dance and gymnastics were always eager to lend a hand. Without all of their support, I don’t know what we would have done. My mom was nearly exhausted from the effort of working and keeping our house together, but with the help of friends and extended family, we were able to get back on our feet.
Weeks turned to months. My aunties went home. Dad continued to recover. The doctors recommended he come in for a physical every half year, to make sure the cancer hadn’t returned. When he passed his first checkup with flying colors, it was like we had all been holding our breath without realizing it. Suddenly a weight left our shoulders. When Dad passed the second physical with no problems, we thought we were in the clear. A year cancer-free! To celebrate, we decided to go on a very special bike ride: the Register’s Annual Great Bicycle Ride Across Iowa, or RAGBRAI.
In Iowa, RAGBRAI is a big deal. It began in the early seventies and has been held every year since. Each summer, thousands of cyclists get together to ride from one end of the state to the other. It’s not a race—there’s no winning—it’s just a great ride through lots of cool small towns and beautiful open fields. It’s broken up into multiple sections, done over the course of a week. Every year the route is adjusted to go through different communities in Iowa. We’d never done it before, but we always talked about it, and this year, the ride was going right by Iowa City. Now, with Dad out of the hospital, it seemed like the perfect year to take part.
And there was another reason: Lance Armstrong was doing the ride for the first time ever! Not only did he survive having cancer in his testicles, lungs, and brain, but immediately after he recovered, he won the Tour de France bike race—seven times in a row. When we heard that he was at RAGBRAI to raise awareness for his cancer work with Team Livestrong, the ride seemed like something we just had to do—even if it made Mom nervous.
“Okaaaay,” she said as we stood in the driveway waiting to kick off. “You boys be careful.”
In this case, I was pretty sure we “boys” included my father.
“Of course!” we said in unison. Soon we were pedaling down Teg Drive and off to the ride.
I couldn’t have imagined a more perfect day for cycling. The sky was clear and bright. I slipped into an easy rhythm, pedaling slow and steady. When we hit the first little hill on our way out of the neighborhood, I stood up on my pedals and coasted into the wind, my eyes closed, the sun warming my face. It felt like riding into pure joy.
We were meeting up with RAGBRAI on day two of the ride, in a town called Coralville, which was about twenty-five minutes by bike from where we lived. We’d heard that Lance was going to give a speech, and we didn’t want to miss out on it.
In fact, since Dad’s transplant, we’d been doing a lot of things to make sure we didn’t miss out on them. Being that close to death had given Dad an awareness of how short life could be. From now on, he said, he wasn’t missing out on anything, so that’s how we lived. Because he loved good food, we went out to eat more often. Mom wanted to find a way for us to go to Nepal, because my father had always dreamed of seeing Mount Everest, but the doctors said it wasn’t safe. Instead, we started planning a trip to California, for Dad to see his mom, who we called Po Po.
I learned an important lesson that year: it’s easy to miss out on great things because they require extra effort, and we think we have all the time in the world to do them “later.” But nothing is guaranteed. Take advantage of now, because you don’t know what tomorrow will bring. RAGBRAI and Lance Armstrong’s speech were two things Dad wanted to take advantage of while we could.
On our way to RAGBRAI, we rode in a neat little line: first Dad, then me, then Matt, then John, each on a different-colored bike. I’d had mine forever. It was a little red Trek bike that I’d gotten from Walmart for seventy dollars. It wasn’t fancy, but it fit me well and I’d been riding it for years. Dad had a silver Raleig
h, John had a red one, and Matt had a nearly new blue Trek bike. Together, we were just a shade off from being the colors of the American flag!
Along the way, we passed lots of other cyclists. Iowa City is a bike-friendly place, and around RAGBRAI, you couldn’t go more than a block without seeing someone riding. Everyone knew where we were headed, and people on the streets smiled and waved or honked their horns as we passed. I knew it wasn’t personal, but I still felt like they were talking especially to us. “Congratulations,” I imagined they were saying, “You did it! You beat cancer!”
When we finally reached the official rally point, it was like a giant street fair. There were blocks and blocks of food stalls, games, and street vendors selling souvenirs. We locked our bikes to a lamppost and wandered through the crowd.
“How are you doing?” I asked Dad. The ride had been his idea, but I couldn’t help but worry. Even though there were no signs that his cancer had returned, he still had bad days when he had no energy and everything hurt. If getting there had been too hard for him, I figured we could enjoy the festival and skip the ride. The important part wasn’t what we did, it was that we did it together.
“I don’t feel good,” Dad replied.
My heart started pounding. If I called Mom now, I wondered how soon she could pick us up. Or maybe we should just find an ambulance, I thought. I scanned the crowd for an emergency first-aid station.
Then Dad laughed.
“I don’t feel good,” he repeated. “I feel great! It’s a beautiful day, I’ve got my boys with me, and we’re going to hear Lance Armstrong speak. And I can’t wait to get back on my bike!” He put one arm on my shoulder and the other around Matt. Together, the four of us made our way to the stage where Lance was being introduced.
I was so excited I could barely contain myself.
In fact, I was so thrilled to hear Lance talk that I didn’t listen to a word he said. I spent the whole time thrilled. Wow! That’s really Lance Armstrong! Then, the next thing I knew, he was getting off the stage. I’d been there for the entire speech, and yet somehow I managed to miss the whole thing. I know he talked about cancer research, and raising money, and making a difference, but if you asked me now, I probably couldn’t tell you a single specific thing he said.
