My Name is Luke Weber and I am a Cancer Survivor

    My name is Luke Weber and I am a cancer survivor.

    When I was 3 years old, I was diagnosed with a rare pediatric cancer that was literally all over my body – in my legs, in my spine, in my hips, in my head and even in my blood. My cancer affects only 80 kids a year in the US, and it does not usually bring a lot of hope.

    But I was lucky. I found my hope at Memorial Sloan Kettering Cancer Center and specifically in my amazing doctor.

    I went through 17 months of chemotherapy, radiation and surgery and thought my cancer was gone.

    But it came back twice – first when I was 5, and then again when I was 9.

    I remember that last relapse perfectly, as if it were yesterday. I was nine years old and I had been cancer-free for two years. I was making a good recovery from the disease, getting stronger, running a mile every day, playing basketball, and beginning to grow normally again.

    I walked into my parents’ room. It was only 5pm and both my parents were home. I could see the grim looks on their faces. I could tell something was wrong. My mom said softly, “I know this will be hard, but we got the results from your MRI. You have a tumor in your right leg, behind your knee. Your cancer is back.”

    BAM! That’s how it hit me, like a bullet had just hit that leg. I sat there, screaming, “It’s going to kill me this time!” All I could think of were the needles, the blood, the fear, and the loneliness. I thought my war with cancer was over. Nobody, not even most of the nurses and doctors at my hospital, know what it’s

    like to live with cancer. It is just horrible. It keeps you in the hospital for treatment through the night, keeping you awake with nothing to do but watch reruns of high school football games, or play FIFA soccer on an iPad until you have memorized every play from every drive, and you have beaten tournament mode for every soccer team that has ever existed. And when you feel tired, and nauseous, and desperate to fall asleep, that is the moment when you know the night will never end. These nights had lasted for 6 years, and now I would have to go through it again.

    For the first time in my life, I WAS SCARED. I wasn’t 3 or 4 or 5 years old anymore, happy to be home or in the clinic watching TV or playing Xbox all day. I was older and I understood. I understood that I would not feel well enough to play basketball or run in the park. I understood that I couldn’t go to school every day and hang out with my friends. And I understood that the little hair I had would fall out and that I would stop growing. And more than anything, I understood that THIS COULD BE IT.

    I asked my doctor, “Will I die from this? He said, “I don’t know, but I promise I will do everything I can to fight this.”

    For the entire summer, I was in and out of the hospital. I lost about 12 pounds on my 60 pound frame. I was gaunt and weak and sullen. I literally looked grey. Emotionally, I regressed. My normal optimistic, happy self was replaced by a little boy I couldn’t recognize. I cried often and I wanted my mom with me all the time. When September came, all my friends returned to school, but I wasn’t in class. I was in the hospital, getting treatment, or at home, too sick to get out of bed. I was depressed.

    I wanted so badly to get back to normal. I forced myself to go to school when I felt well enough. We planned playdates when I could and even had friends visit me in the clinic. I loved to sing and found myself singing verses of songs to distract me from my situation. I especially loved the musician, Matisyahu, a Jewish pop reggae artist. My parents surprised me one evening with tickets to his concert and backstage passes. In the middle of the concert, Matisyahu invited me onstage to sing with him, and together, we sang this song, called “One Day”:

    Sometimes I lay, under the moon And thank God I’m breathing; Then I pray,
    Don’t take me soon

    ’Cause I am here for a reason. Sometimes in my tears I drown But I never let it get me down So when negativity surrounds

    I know someday it’ll all turn around

    Those words, that night, turned me around. It felt like it was my destiny to sing that song, in front of thousands of people in Tarrytown, to show the world that I was still up on my feet, and that nothing, not even a life-threatening disease, could bring me down. It reminded me that I can never give up hope, I can never give up my optimism, and I can never, ever give up in my battle against cancer. From that point on, I was no longer lost. I knew what my goal was, and I trusted that my doctor could get me there.

    My doctor searched and found me the last spot on an immunotherapy trial, a new promising treatment. I finished that treatment more than 4 years ago and I have been cancer free ever since.

    Living with cancer has taught me that I don’t sit back, I fight back. I am committed to making sure that at some point in my lifetime, nobody will have to go through what I went through.

    To fulfill this goal, my family and I have gotten involved in a number of cancer fighting organizations, to raise money that will bring hope and treatment options to children with cancer. I have spoken and been interviewed at dozens of events across the country, including just two days ago in Silicon Valley, with the one goal of inspiring people to help other children fighting cancer.

    I still struggle with the side effects of cancer. With loss of hearing, a half bald head, a limp, and a height of 5 feet on the dot, I can’t pretend that I I’m like everyone else. My struggles make me a person who stands out in society, which can make it hard for me to find my place. I was at my old school since I was three years old, an age where nobody really considers differences. I made a great group of friends who have supported me through the ups and downs of cancer. As we have gotten older, my group has only grown stronger. But now I am faced with another challenge, to fit into this new school, not by appearing like everyone else, but by finding a way to connect with a new group of people. I may look different on the outside and have had life experiences unlike most other kids or even adults, but inside, I am just a normal 9th grader who loves basketball, singing, theater, and playing XBox. Like most of us here, I too am trying to find my way.

    Despite the struggles cancer has given me, I have so much to be thankful for this Thanksgiving and every day of the year.

    I am thankful because I was lucky enough to be treated at the best cancer hospital in the world. I am thankful for my doctor, who has saved my life three different times, and who has turned despair into hope. I am thankful for my family, who has been at my side, helping me through my struggles. I am thankful for everyone in my life, who in some way, has inspired me to keep fighting, to keep reaching, and to keep thinking optimistically.

    And I am thankful for my life. For the fact that I had a life threatening disease, three times in 8 years, and I am still breathing. That I am able to come to school each day, and that I am able to tell my story to inspire others to join this cause. If it wasn’t for my experiences, my life would be completely different. I wouldn’t have the same friends, I wouldn’t be raising money for cancer research, and I probably wouldn’t be at this school. But if it’s cancer that has made me who I am today, then I see my experiences as a blessing, not a curse.

    Thank you.

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