The André Sobel Award
Matthew Terry
September 21, 2000

Every morning Maggie has the same routine. At 6:30 a.m., with a pat on the head and a kiss on the cheek from her mother Gloria, she starts her day. After she has picked out her clothes (today she will be wearing her favorite pink dress with the blue fringe and pink buttons) she is off to the bathroom and into the shower. After Maggie finishes brushing her teeth and cleaning her face, she enjoys the breakfast Gloria has prepared, bacon and eggs scrambled just the way Maggie likes. Before she can even finish her breakfast, the sound of the horn from the school bus enters through the window. Maggie grabs her books and her sack lunch and she is off to meet her classmates and go to school.

The other girls and boys on the bus beam their eyes at Maggie’s hairless head. Covered by her father’s Kansas City Royals baseball cap, this is the first thing about Maggie that the classmates notice. They don’t even notice the periwinkle fringe and the big pink buttons on Maggie’s adorable new dress. When Maggie goes to take a seat the other children don’t open up their benches to her, and she is forced to sit by herself on the farthest bench from the front. On the long, 13-mile trip to school, none of the other kids take any notice of Maggie. They just go on with their average conversations about their normal lives. None of the other girls have any interest in the results of Maggie’s appointment yesterday with Dr. Larsen or her latest lumbar puncture test.

Maggie goes through the day just like any other fourth grader would. She sits through the whole morning listening to Ms. Margaret’s lecture on the Seminole Indians of the Southeast. At eleven o’clock the class splits up into groups to make dioramas of Indian dwelling places. None of the other children in the class ask Maggie to work with them. So Ms. Margaret is forced to pair her with Joey and Stan, two boys in the class who are best friends and co-captains of the local eleven and under club soccer team.

Maggie has Acute Lymphocytic Leukemia. She was diagnosed when she was only 8 with A.L.L., and for the past 2 years she has been going in weekly to see Dr. Larsen at the Kansas City Clinic for Pediatric Cancer. Maggie has no common interests with any of the other girls in her class, so she has no close friends. None of the other children know anything about Methotrexate and Prednisone, or the other grueling chemotherapy treatments she is forced to take. Maggie isn’t a member of the soccer team or the secret tree house club like Joey and Stan. Frankly, Maggie doesn’t have the time or energy for any of the activities that normal 10-year-old kids involve themselves with. She spends most of her time at the clinic, seeing the doctors, having treatments, or enduring a spinal tap. Because Maggie is too shy to explain to the other kids what she goes through day to day, the other children in Ms. Margaret’s class don’t try to get to know her or make her their friend. Maggie feels all alone in the world. 

When I was 15 years old I was diagnosed with Hodgkin’s Lymphoma. Like Maggie, I have had similar problems finding friends who can relate to what I am experiencing. Because of this, I am able to better understand the isolation and solitude connected with having Cancer. I have come to recognize the need for education, so that young people can learn to be less afraid and more accepting of others with life threatening illnesses. I want to help educate children, as well as adults, about what Maggie and so many other children experience. I want people to open their minds and hearts to a child with Cancer who may be in desperate need of a friend.

When I was in fourth grade I had never even heard about chemotherapy, or even Cancer for that matter. I had a girl in my class who had Leukemia, and her name was Susan. When I was 10, I didn’t make any effort to involve Susan in any of my activities or be her friend because I just didn’t understand what she was experiencing. I was afraid that I was going to say something or do something that would hurt her, or upset her on a hard day. I didn’t ignore her because she didn’t have the same ambitions and dreams as I do. Honestly, I never asked her, so I could have never known.

Today, Susan goes to a different school. Now that I too am a Cancer survivor, I feel like I share a common bond with her, even though I have never said a word to her in my life. If I hadn’t had that common experience, I could never have understood what Susan went through. Now, I want to be her friend because I feel that I can share my experiences, as well as my ambitions and dreams, and she will understand.

During the seven months that I was away from school when my Lymphoma reccured, I underwent a complete transformation as a human being. During the first few weeks away my friends would call. I remember just how hard it was for me to relate to them. They were going off to formal dances and basketball games, and I was lying at home in bed waiting for the anti-nausea medication to kick in. Not being in school, it was very hard to keep friends. A close friend slowly stopped calling because she became too fearful of the seriousness of my illness. While I was in treatment I felt abandoned. Children have difficulty dealing with illness. Sadly, many withdrew when I needed them the most. Although a few of the kids from my school came to see me in the hospital, dropped notes in the mail, and called me on the telephone, I still had no interest in keeping up our friendship. From my point of view, they didn’t have any clue what it was like to have Cancer, and that made it hard for me to be their friend.

I wanted so badly for them to understand. I wanted them to know what it was like to have experiences that they never had. Tolerance means that you can make an effort to understand something that you have never experienced. Most young people have no experience of serious illness so their basis for understanding must come from education. If my friends had been educated I think that they could have been the perceptive friends that I so badly needed.

I entered High School in 1997, curious and ambitious. I was interested in achieving excellence in academics, so I took all of the most rigorous classes. My other focus was to make the highly honored chamber choir and to get a lead role in the upcoming musical. When I was a freshman, I gave little thought to signing up to do community service or joining a volunteer group. My goals were all self-centered, much like most of the other freshmen I knew.

I became ill in the beginning of 1999. I was diagnosed in March of that year. At the time I had noticed that I had a very rapid heart rate and I was short of breath most of the time. I saw several doctors, including a psychiatrist and a cardiologist, until I was finally diagnosed with advanced Hodgkin’s disease.

Through the months of my first treatments I made the proper decision to continue taking classes and go to school. Even though I had been diagnosed with this life altering disease, nothing in my world changed dramatically at first. Two weeks after I was discharged from the hospital I went on stage to perform my leading role in the musical. I was bald and emaciated, but I wasn’t willing to accept the fact that my life was on the brink of taking a much different course then I had once planned. For the six months until I was announced in clinical remission I hadn’t changed much as a person, I was still at school taking the same classes, involved in the same activities.

In January of 2000 I once again became very sick and I was diagnosed with a severe relapse. Because of the seriousness of the recurrence, I was forced to take a leave of absence from my studies and focus all my mind and energy to fighting my disease. For the first time I began having premonitions of death. My life was suddenly shifted drastically, and it became difficult for me to relate to any of my friends because they knew nothing about a life or death experience. During that period my friends and I lost contact. This left me desperate and alone in what seemed to be the culmination of my life.

I had a successful stem cell transplant in April. In July my Gallium scans came out disease free. Now, on the verge of returning to school, I can reflect on how much has changed in the past two years. I feel that my experiences with Cancer have taught me more than what I could have learned from spending the past few months in a classroom. I have come to realize that because of my experiences with Lymphoma, my focus for life has been altered drastically. While my fellow classmates are busy preparing for SAT’s and the IB tests, I find myself wanting to take a far different route with my life over the coming months.

In the months that I so drastically needed answers and support, I turned to the Internet. I found the support that my friends couldn’t provide from the survivors I met online. Resources there helped us to better understand and cope with the process of treatment. The support groups and survivor stories that I found on the Internet gave me the information I needed to mentally conquer my disease. This inspired me to create my own web site, CureHodgkins.com. I launched CureHodgkins.com to help patients and their families find the best available resources and information. My slogan is: “CureHodgkins.com, helping patients and their families find a cure.” I feel that by providing answers as well as support to the community I can best educate patients so they can make their process of Cancer as smooth as possible. The Internet is an incredible superhighway for knowledge, and someday it will become the primary resource for Cancer patients, their families, and friends.

CureHodgkins.com made me a pivotal figure in the online Hodgkin’s community. The site connected me to patients who were having similar experiences. By connecting to other patients, I didn’t feel alone. The web page served many other important roles for me in the months during my treatment. The time that I invested into the development of the site gave me a focus. Without being able to spend time in my studies, and too sick to get out of the house, the website provided me with a way that I could take my mind off of treatment, and spend my time in a productive way. CureHodgkins.com saved my sanity. It allowed me to become an expert on my disease and help others by sharing the knowledge I had gained.

My immediate goal is to create an organization to develop and distribute resource materials and information to newly diagnosed Hodgkin’s patients and their families. I believe that by educating the entire community, the process of treatment will become smoother for patients and families. In the future, I hope to work to integrate education about Cancer into the classroom. I want to be able to catch children when they are young to inform them about Cancer.

I am proud of my website because it’s creation was so important to my emotional well-being while I was sick. Now that my treatment is behind me, it provides me with an opportunity to be part of the new medium that supported and educated my family in our time of crisis.

I believe that through my website I will be able to connect with children like Maggie who are in desperate need of answers as well as emotional support. My battle with Cancer has helped me to realize the importance of my time here on earth, and the power I have as an individual to positively affect lives.