I want to get back to my regular life, but it’s tough when people don’t treat me like a regular person. When I went back to my high school this fall, some kids weren’t sure how to act around me. If some guys were making plans to see a violent movie, they wouldn’t ask me to go. Girls would say “Awww!” and baby me—not think of me as someone to date. (Luckily, that’s changing.) I’m also more independent than people think. I can write, eat with a fork, open doors, type on my laptop and even punch my friends. If little kids stare and ask questions, I just say something goofy like, “I misplaced my hands.”
Joking around is how I deal with things. And yeah, I do have times when I get frustrated or discouraged. But I’ve always loved a challenge, and this is the ultimate one. I don’t want anyone to feel sorry for me or think I’m helpless—I’ve just had to change some of my goals, that’s all. The way I see it, nothing’s impossible. I want to get into wheelchair racing and compete in the Paralympics. I’m learning how to drive, and this summer I want to travel abroad, maybe to New Zealand or Sweden. So I can’t button a shirt yet—but hey, all in good time.
Nick Springer
As told to Stephanie Booth
The Long Journey Home
Conflict builds character. Crisis defines it.
Steven V. Thulon
I was like any other twelve-year-old. Girls had cooties. Nintendo and bike riding ruled my life. I had homework that I didn’t always do. I won a few ribbons at track and field. I tried to stay up past my bedtime almost every night. I played baseball. I had a continuous craving for pizza. There was one thing that was different, though. I was really tired. I would come home and go to sleep at 4:30, get up and eat, and then go back to sleep until the next morning. My mom started thinking something might be wrong so she took me to our family doctor. He sent us for some blood work. We waited a week or so for the results. When the doctor’s office called back, they wanted to do more tests. To this day, I don’t know what they actually told my mom, but I just went to the hospital and they did their tests. After some more blood work, they came back and said they needed to do some other tests. One of them was a bone-marrow test. They took a big needle and stuck it into my lower back. I was out cold for the entire thing.
I honestly don’t remember how people were acting around me during this time. I don’t remember my mom or dad being upset or anything. I just thought they were normal tests they did for tired kids. The same night as the bone-marrow tests, I was admitted to the hospital. The next morning, the oncologist spoke to my mom and dad and told them that I had acute lymphoblastic leukemia.
I don’t remember much of that morning—maybe it’s better that way. The doctor and my mom and dad all came into the room, and the doctor explained to me that I had cancer. I just sat there and listened. I listened very closely. I didn’t understand much until the doctor explained to me that I was going to lose all my hair. She said she was going to send a team of people to my school to tell all my classmates and my teachers that there was a student who had cancer. They said they would tell everyone that I wouldn’t be feeling well and what they could do to help. They would tell them to treat me normally, she said, as if I wasn’t sick. I was glad to hear about that because I was really scared about going to school with no hair. I didn’t know what people would say or think. Looking back, I’m glad they did that.
I didn’t really know what hit me. The next day I was getting lumbar punctures and massive doses of radiation. I had a full-blown transfusion. I received all this medicine and treatment in order to put me into automatic remission so they could begin chemotherapy. The first three weeks were brutal. The days I had treatment I’d come home and be so sick that I couldn’t sleep. I’d be throwing up and couldn’t eat anything. When I would eventually pass out from exhaustion, I would wake up in the morning and my pillow would be full of hair. That’s when it started to hit me. I was really sick. When I would take a bath, I’d see chunks of my hair floating down the drain.
My mom took me to the barber to get my head shaved so it wouldn’t look so bad. My older brother Matthew came along for support. After the barber had shaved my head, I looked in the mirror and suddenly got really sad. In an instant, my brother jumped into the barber’s chair beside me and instructed the barber to shave his hair the exact same way. He didn’t want me to feel all alone. It sounds silly but, by him shaving his head, it showed me that he loved me and he would do anything to make me feel better. That meant a lot to me.
My mom took me to the hospital every other day for the first three weeks. She took care of me because my dad had to work. She was always there for me. When my dad got home from work, he’d sort of take over and help out. Through all the chemo, I made a little friend named Brad Rowe. We went through everything together. We laughed. We cried. We played Nintendo. That made things a little easier for me.
The Sunshine Foundation came to us and offered me and my family a wish. They said they’d give us whatever I wanted. They said they didn’t care what it was, just as long as it made me happy. I wanted nothing more than to meet Patrick Roy of the Montreal Canadiens. They set up this huge dinner and game and two-day trip. I was even going to sit in the team box during the game. Well, I wasn’t too lucky there, either. The NHL strike took place and along with the players, my wish walked, too! The people from the Sunshine Foundation felt horrible. We ended up going to Disneyland instead. It was great!
The summer following my first batches of chemo, I went to a baseball camp because I was feeling better. I quickly realized I hadn’t grown as much as the other kids. I couldn’t run for as long as they could. I couldn’t go all day like them. Finally, exhausted, I went to the coach to tell him I was sick and I just started crying. I thought he wouldn’t, or couldn’t, understand. It was brutal. I was embarrassed and frustrated because I couldn’t do as much as the other kids. Through tears I told him I had cancer and that I wasn’t able to go crazy all day long like the other kids. He said the most amazing thing to me. It has stuck with me ever since. He bent down beside me and told me, “Phil, God is taking care of you and keeping you here because he has something special planned for your life.” Suddenly, I had something I didn’t have a whole lot of before: I had hope.
My hope seemed to be built on sand, though. My friend Brad relapsed. He ended up in intensive care for a week, but eventually got out. I remember thinking everything was going to be fine. Then, a few weeks later one morning in class, my teacher pulled me aside and told me that Brad had died. I lost it. He had the exact same cancer that I did, and he didn’t make it. I cried all day. I went to the funeral and didn’t believe a minute of it. At thirteen, I didn’t know what was going on with my life.
I was off treatment in January of my eighth-grade year. I actually had a few parties. Strange theme for a party . . . but, man, did we celebrate “No More Chemo!” One party in particular was huge: my friends, both sides of my family, my brother’s and sisters’ friends, everyone. I continued to go for my checkups, and I got a pin that said, “I Beat Cancer!”
I’m eighteen now, and my life is just like any other teenager’s. I hate exams. I play golf. I’m involved in my school. I do drama and help build stuff for tech. I help out with chaplaincy and all the masses. I have great friends. I will never forget, though, the difference my illness made in my life. I look at things differently now. I value my parents and their love instead of fighting with them. I get scared every now and then when I think that they won’t be around forever so I have to be with them now. I do the family trips and dinners, and I am happy to be there. I love my brother and sisters. Yes, they sometimes drive me crazy, but I wouldn’t trade them for the world. I am thankful for a school that teaches me lessons and friends who love me.
I think of what that baseball coach told me. Every day I try to figure out God’s plan for me and try to live the life that I was graciously given a second chance with. I believe in the goodness of people. Every single one of us has a reason for being here. And anything is possible as
long as you keep the faith and never, ever give up hope.
Phillip Thuss
Born to Win
Consult not your fears, but your hopes and dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed at, but with what it is still possible for you to do.
Pope John XXIII
The doctor called my mom and dad and me into his office. He said, “Jake, you have angiosarcoma, a very rare form of cancer. You have thirty tumors in your foot. In the last fifteen years, there have only been a few instances in the United States in which this form of cancer occurred only in an extremity. It is usually found in the internal organs, but for some reason yours started at your foot and spread to your ankle.”
How could this be? During a basketball game—a summer league—I had come down wrong on my ankle. After limping around all month, I decided to get it checked out. School was starting, and I needed to be in top condition for basketball season. I thought at worst that I had fractured my ankle.
The doctor continued, “You really don’t have a choice here. The biggest problem with this type of cancer is there is no cure. Chemo and radiation won’t work. We need to perform a below-the-knee amputation.”
I went home and went right to my room where I had a really, really good cry. I thought, Why me? I’m only sixteen years old. I’m a good kid; I haven’t done anything wrong in my life.
That afternoon was the only time I felt sorry for myself. I thought about my grandmother, Baba—she had passed away a couple of years before—and how brave she was. She had diabetes. Because of complications, her leg was amputated. No matter how sick Baba felt, she always smiled and never complained.
I talked to God for a while that day. I said, “I’ll try to be as strong as Baba was. If this means giving part of my right leg so I can keep my life, then I’m completely game, because I’m not about to lose my life.”
The morning of the surgery I listened to a song from my favorite group, the Beastie Boys. I told myself to be strong, to just get it over with.
The first few days after the surgery were the hardest. I experienced phantom pains. Those really hurt. The brain doesn’t understand at first that a body part is gone. I would wake up in the middle of the night having to scratch my toe, and I couldn’t. This would go on for three hours—it was torture.
I was up on crutches right away. The next step was to get my prosthesis—an artificial leg. I’ll never forget that day. The physical therapist told me that walking with my prosthesis would be difficult. I should expect it to take one and a half to two months to learn to walk without crutches. I looked at him and said, “You know what? I’m going to learn to walk without crutches in two weeks.”
It ended up that I was half a week off. When I walked into the therapy clinic, my therapist held up a basketball. He said, “Here, Jake, since you proved to me you could walk in record time, let’s shoot a round.”
I slowly walked outside to the court. I stood at the free-throw line, and he threw me the basketball. I threw it up and sunk it. You can’t imagine the feeling when I heard the swoosh. I thought, I’ve still got it. I’m still the same person.
From then on, my progress just took off. A month later I learned how to jog. I was already playing basketball again, and during my free period at lunch, I was shooting baskets with my friends.
My dad took me to San Antonio to meet Thomas Bourgeois, the number-one pentathlete in the United States. A pentathlete is an athlete participating in five events at the Paralympics, elite sport events for athletes from six different disability groups. They emphasize the participants’ athletic achievements rather than their disabilities. The Paralympic Games have always been held the same year as the Olympic Games. In Atlanta in 1996, 3,195 athletes participated.
Thomas won a bronze medal in 1992 in Barcelona and a silver medal in Atlanta in 1996. When we met up with him, I couldn’t help but stare. Here was this professional athlete wearing shorts exposing his prosthesis—a black, robotic-looking device—and totally confident. He even had a sandal on his foot. And here I was wearing long pants trying my best to hide my leg.
After lunch, we went to the basketball courts. He and I played three college kids and beat them. I couldn’t believe his moves. He made those guys look like little kids.
Thomas said, “Jake, it’s unbelievable that in six months you are playing ball like this. You have a future in athletics.” I went with Thomas to the Summer Nationals to watch him compete. To see all those athletes with prostheses was mind-boggling.
I ended up taking a clinic with Dennis Oehler, a gold-medal winner in the 1988 Paralympics. He puts on clinics for new amputees and teaches them how to run again. We started with a fast walk and then a jog. He told me to sprint like I normally would. I took off running. It was nine months after my leg was amputated, and I was sprinting. Tears filled my eyes—I felt like I was flying.
Dennis told me he had never seen anyone run so soon after an amputation. He entered me in the amateur one-hundred-meter race. I ran a fifteen-second hundred, which is pretty bad. But I finished the race and felt incredible.
I came home and told my parents I wanted to start running—but a sprinting prosthesis costs twenty thousand dollars. Luckily, Nova Care, the manufacturer, was so amazed with my progress that they sent me a leg for free.
I trained for the Nationals. I wasn’t ready to compete with my old school team, but I got to train with them. The Nationals were awesome. This time I ran a 13.5-second hundred, qualifying me for the World Championships.
I went to the Olympic Training Center in California. Only U.S. Olympic and Paralympic athletes can train there. I worked really hard knowing I only had two weeks to get ready.
The World Championships were held in Birmingham, England. There were sixteen hundred athletes from more than sixty countries. My parents and sister came to see me compete for the first time. I made it to the semifinals, but once there I got totally blown away. I was just happy I was even there in the first place, with people who shared my philosophy. The feeling at those games—the spirit— was all about athletes from all over the world overcoming adversity and giving everything we have.
When I got back home, I tried out for the track team at my school and made the varsity squad. I think I’m one of the first amputees to ever run varsity track against non-amputees.
At the first race, as I lined up against two-legged strangers, I felt I had to break the ice. My dad told me, from the beginning, that people were going to act the way I act. He said to go into every situation with a positive attitude.
I looked at the other guys in my heat and said, “Am I at the wrong meet? I thought I was supposed to be at a disabled meet. You guys are going to kill me.”
One guy said, “I’ve seen you in the newspaper. You’re supposed to be fast. We heard about you. You can’t pull that on us.”
I thought if I could beat just one of them, I’d be happy. I ended up finishing fourth and beating three or four guys. They told me I was the fastest one-legged guy they’d ever seen.
My goal is to compete in the Paralympics this year. In the meantime, I train hard. I also go to the hospital and hang out with little kids. It’s the greatest when I see a little guy, five years old, with his prosthesis, and I can lift up my pant leg and say, “Oh, look, I’ve got one, too!”
I am one of the lucky ones. My parents, coaches and friends supported me from the moment I was diagnosed. I met Thomas, who believed in me, and then Dennis, who taught me how to run. I’m going to see where my running takes me, but when that’s over, I’d love to do what Dennis does—go out and teach young amputees how to run again. I also want to continue to tell my story to kids and adults who are suffering—anyone who’s lost faith and thinks life is over—that if you look for something good to come from something bad, you’ll find it every time. With the right attitude, you always win.
Jake Repp
Lumps
Never be a
fraid to trust an unknown future to a known God.
Corrie ten Boom
It’s strange how it takes realizing your life will never be the same again to see how great each day really is. I’m fourteen years old, and I had been diagnosed with Hodgkin’s lymphoma, a cancer of the lymph nodes.
Last winter, I made frequent visits to different doctors for several problems. I had a severe case of asthma and allergies and rashes on my legs. I had hip pains that kept me up at night. I was anemic, too. One afternoon, I went in to see my doctor about my hip pains and some swelling in my throat. We thought I had tonsillitis. My doctor took a few X rays and said everything looked fine. He looked inside my mouth and found a mild case of thrush, an infection, which he said would probably go away in a couple of weeks. When he felt my throat, he became concerned. I had several, hard-as-rocks lumps in my neck, chest and shoulders, where the lymph glands are. They weren’t tender (if they were, that would have been because of a cold) and when I tilted my head, you could see lumps sticking out of my neck. He told my mother on the phone that night that he wanted me to be seen at Children’s Hospital.
That night I went out to see a movie with my boyfriend at the time, Matt. I had a great time. I didn’t even know that I was going to the hospital the next day. When I woke up the next morning, my mom told me to get ready. The whole way to the hospital, I had this weird feeling in my stomach, as if I were going up one of those tall roller-coaster hills.
It took us forever to find a parking space. When we made it inside, it didn’t look like those hospitals in movies, all spic-and-span clean and wall-to-wall white. It was kind of warm and cozy, just like a hospital for small people should be.
When we went into the waiting room, a little bald girl with bright blue eyes and a smile walked out. I thought to myself, Oh, how cute. I wonder what she is here for. Then, I saw a boy from my school walk in who I didn’t know very well. I knew he had cancer the year before. I knew his name was Matt, just like my boyfriend, and I knew that all the schools in the city we live in had heard about him and the disease he had. After he sat down, a little boy walked in wearing a black beanie hat. I eavesdropped on his conversation with his mother.