Perseverance: How Young People Turn Fear into Hope-and How They Can Teach Us to Do the Same

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9780765317797: Perseverance: How Young People Turn Fear into Hope-and How They Can Teach Us to Do the Same
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Can you imagine being in high school or college and suddenly learning you have cancer? You thought you had a lifetime ahead of you and the whole world at your feet, but suddenly you're told...maybe not. How would you cope?

That's the question each of the people in this book had to answer. Each individual tells his or her amazing story, in an honest, first-person perspective that provides a depth you would never see otherwise. Inside, you'll meet Zac York, who tells of climbing Mount Whitney--on crutches--after battling brain cancer. You'll meet Jessica Myers, who had to cope with her boyfriend's callous reaction as she struggled with thyroid cancer. And you'll meet Rob Dooley, who fought brain cancer and was left with major cognitive deficits--including short-term memory loss--but never let that get in his way of obtaining a college diploma and entering graduate school.

You'll also get to know and come to love seventeen others, who tell their captivating stories in their own words. It's all here--struggles, triumphs, friendships, love, breakups, relapses. Twenty unique and fascinating stories, with one common theme--childhood cancer. They'll make you smile, make you cry, and fill you with hope.

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About the Author:

Eight years ago, CAROLYN RUBENSTEIN founded Carolyn's Compassionate Children (CCC), a 501(c)(3) non-profit organization that provides emotional and financial resources to childhood cancer survivors. Over the past five years, CCC has awarded 80 college scholarships to childhood cancer survivors.

As an undergraduate at Duke, Carolyn majored in psychology and conducted research examining quality of life for adolescent survivors of childhood cancer. A Phi Beta Kappa and summa cum laude graduate, Carolyn will begin a doctorate program in clinical psychology at Harvard this fall. She will continue to expand her child advocacy work and make more resources available to childhood cancer survivors.

Excerpt. Reprinted by permission. All rights reserved.:

CHAPTER 1

Emily Corwin

Laughter gives us distance. It allows us to step back from an event, deal with it, and then move on.

—BOB NEWHART

On June 11, 2005, I had my first phone interview for this book. Before I dialed,

I had that nervous feeling in the pit of my stomach. I had prepared questions, but felt as if I were invading someone else’s life. I asked myself repeatedly, “What gave me the right to ask these questions?”

Then I picked up the phone and heard Emily Corwin’s voice. Her words ran fast as she spoke with great excitement and energy. She disarmed me with confidence and humor, which encouraged questions. Emily and her mom, Pat, have been my greatest supporters since day one of this incredible book journey.

Throughout high school, Emily was involved in Spirit of Sound, a women’s singing and dancing group. She played percussion in her school’s band and was involved in school plays. But singing is definitely her favorite hobby. She says, “I love to sing. I never stop singing. When I sat for hours in waiting rooms, I would start singing if I became bored. I would be goofy and funny, but sing. My favorite music is anything acoustic. I love hearing live raw music. My least favorite is hard rock.”

Emily’s creative energy and passion for life keep her grounded and connected to her individual self. She doesn’t want to fit a mold and defines her own path with every choice she makes. In school, she never belonged to a clique. Her friends are all very different from one another.

Humor and laughter help Emily to overpower negative thinking. She focuses on what she can do and has faith in herself to overcome adversity. Growing up, Emily attended church regularly, as well as Sunday school. She credits her faith for all the good that occurred during her illness—never the bad. She believes religion creates the basis for how she lives her life. For Emily, every experience has a purpose. The purpose of her cancer experience: to help others.

Emily was diagnosed with osteosarcoma her junior year of high school.

Emily Corwin’s Story

Before I was diagnosed, I thought I was in perfect health. In July 2002, my ankle began to hurt. Some days it was swollen and painful, but other days it would feel completely normal. It hurt more frequently at night; I would have excruciating pain and not be able to walk on it. I remember one night crawling to the kitchen for ice, to help the swelling. Sometimes I’d rub my ankle in class and complain to my friends, but they told me I was probably fine. My mom didn’t seem worried either. Sometimes she’d suggest having it X-rayed. It seemed like every time I was ready to go get an X-ray, my ankle would temporarily stop hurting.

I finally went for an X-ray in October 2003 because my ankle was hurting while we were in my hometown in Michigan for my grandmother’s funeral and my family was familiar with that hospital. My sisters were with me, and they encouraged me to go to the doctor. I thought I might as well get it over with, since we were there.

The doctor told me it looked like I had a calcium deposit on my ankle, which is what develops with an unhealed fracture. Strangely enough, there was no evidence I’d had a fracture. The doctor told me there was a very small chance it was a tumor, but the idea that it actually could be one didn’t even run through my mind. They sent me home and said I might want to have an orthopedic surgeon look at the X-ray just to be sure. The stepfather of my sister Cathy’s friend in Michigan is a retired orthopedic surgeon, so Cathy asked him to look at the X-ray the following morning.

Cathy said he told her he’d seen something like this before, and he definitely thought it was a tumor. My family had already made plans for us to travel to Memorial Sloan-Kettering, a cancer treatment center in New York City. It was a rare cancer, and the orthopedic surgeon told my family it was the best hospital in the country for that specific type of cancer treatment. Cathy told me we were going to leave Michigan early and go to New York City to that hospital. I cried for thirty seconds. Then I thought, “I can do this. I’m going to be okay.” When my family found out about the tumor, everyone babied me. I worried they would treat me differently.

When Cathy and I returned to my grandparents’ home, I went into the bathroom to be alone. I didn’t want my extended family to find out and get upset until we knew for sure; however, my mom had already told all her sisters. They were sad, but I didn’t want them to be. I remember my mom crying as she hugged me when Cathy and I came into the house. My mom strongly believed I would get better, though, and she tried to remain positive throughout my whole treatment.

Emily making faces – the uh-oh! picture

Photo from Emily’s personal collection

An Adventure

I just tried to tell myself it would be fine—it would be an adventure. My family didn’t have time to sit down and talk about it. We left Michigan and came home to Ticonderoga, New York, then headed to New York City. My mom, dad, and sister Cathy were there with me. We packed enough for about four days. I didn’t say good-bye to my school friends because we were only expecting to be there for three days. When I ended up being there for two months, it was hard not having said good-bye to my friends.

Before surgery, I know it was difficult for my mom. She takes everything so seriously, and I’d never even broken a bone before. She was the one affected the most, and she was in a whirlwind. I wanted to be strong for her; this kept me from crying because I didn’t want to make her feel worse. When we first arrived at Memorial Sloan-Kettering, they did lots of tests: MRIs, X-rays, blood tests, a bone scan, an echocardiogram, an EKG. All these tests were necessary before they could schedule a biopsy. It took four to five days of testing before my biopsy.

Everything was coming at me so fast that I didn’t have time to be scared. It was sad to see all these little kids in the treatment center; I felt like the newbie because I still had all my hair. But Cathy and I joked the whole time, so that helped keep me positive. I didn’t really know what cancer or chemo were even though I’d heard about them. I asked Cathy all kinds of questions that I couldn’t ask the doctor; she was pre-med and a biology major, so she knew things about the treatments.

Before I went into surgery for the biopsy, I was told that if my doctors thought it was cancer they would put a Mediport, a device that allows the medication to be sent directly into my blood system, in my chest. When I woke up from surgery, I felt a pain in my chest, so I knew they had put in the Mediport, which meant I had cancer. I tried to be positive when Cathy told me it really was cancer. I don’t think it really had hit me yet what was happening.

Unconditional Love and Support

During treatment, I tried to communicate with friends as much as possible, but it was difficult to stay in constant communication. Also, I don’t like to talk about my illness, and prefer to focus my attention on others. As a result, my friends never knew the severity of my illness. They knew I lost my hair and threw up, but they didn’t really know why. I could talk on the phone to my best friends and my boyfriend at the time. None of my friends backed away; even people I didn’t know were there for me. They tried to be there as much as they could. My boyfriend came down to visit me right before I lost my hair, and we went to the movies. He was

so supportive. I only saw him a couple of times while I was down there, but the way he treated me didn’t change at all. We dated throughout my entire treatment, although we broke up after I went away for my freshman year of college.

Cathy was able to stay in New York City

Emily and sister Sarah in New York City’s Central Park with me the whole during treatment

Photo from Emily’s personal collection

time. My sister Sarah, a schoolteacher in Michigan, came down about once a month. When she came into town, we loved to shop and see new things—like a Broadway show. My dad and my brother, Matt, were also able to visit me frequently. Matt visited me during school breaks and whenever he got the chance. My dad sacrificed a lot and continued to work full time so my mom and sister could stay with me throughout treatment.

My relationship with Cathy became so much stronger because of my cancer. I still call her two or three times a day. We’re constantly in communication. She was the one who was there all the time. When my mom needed a break, my sister would stay with me. She always remained strong for me.

Throughout my fight, my mom repeated the following mantra: “You have to walk forward, one step at a time. Don’t look side to side and never look back. Keep going forward!” We both live by this statement. I always try to recall the positive aspects of my experiences in the hospital.

Absurdities and Uncertainties

When my entire world changed from the typical teenage setting a high school student is familar with to the impersonal and terrifying realm where a cancer patient lives, it was hard to retain my sense of balance and identity. I tried to accept my new reality and appreciate all of its absurdities and uncertainties to the fullest. In fact, I embraced them. My sense of humor remained strong, no matter what was happening in my life. This kept me from developing a negative attitude even though so many things could go wrong from day to day. I created a new world for myself: “normal” had changed. People came into my room at least every three hours during the night to take tests. Interns were doing rounds early in the morning, around 6:00 A.M. I hated when six doctors would come into the room at the crack of dawn wit...

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