Kristin’s Story

When I was in 6th grade I was doing competitive dance and played soccer. I had bad pain in my left knee so my mother took me to the doctor. She said I was overly active and to take a break for 6 weeks. So I did. When the pain came back again the doctor told me to wear a knee brace while doing sports. That helped a little but not much. The pain would come and go, so I ignored it because so did the doctor. In 8th grade- 1996 I was on the high school track team, still dancing and playing soccer the pain in my knee was bad but I was not willing to give any of those up.

That summer I went to sleep over camp. I feel and hit my knee on a rock- no big deal until I got a bump that wouldn’t go away. I had my physical the week after I got home so I mentioned it to our NEW pediatrician. She felt it and kept her hand on it while talking to us. She sent me for an X-ray that day (a Wed), and that night I went to my friends summer home. The doctor called my mom the next day and said I needed an MRI and it needed to be done Friday. I had it done and we received a phone call around 7pm that night saying there was something on the MRI and whatever it was needed to be checked. Read more

Rachel’s Story

Askin’s Tumor at the spine
Age at Diagnosis: 15
Year of Diagnosis: 1998
Location: Midwest

Diagnosis: I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn’t think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up. Read more

Kyle’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 16
Date of Diagnosis: 1986
Hospital: University of Kansas Medical Center
Team: Dr. Sarah Taylor and Dr. Burton

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years. Read more

Katy’s Story

Ewing’s sarcoma at the ribs
Age at Diagnosis: 19
Date of Diagnosis: November 2007
Location: North Carolina

Diagnosis: I was having stomach pain and went in for a CT scan to rule out appendicitis. While that was clean, they mentioned that there was a three inch mass that appeared to be in my lung. My doctor tells me that I’m her only sarcoma patient to not have any symptoms. At first, the doctors didn’t know what to make of my tumor. It seemed to be in the space between my lung and ribs on my left side. We went from doctor to doctor until we arrived at the professor of surgery at UNC. He said he didn’t think it was anything bad, but decided to take it out just to be sure. After opening me up, they saw that it wasn’t anything good and took out my eighth, ninth, and tenth rib, and the nerve that runs along there. Read more

Carol’s Story

Osteosarcoma at the distal femur
Age at Diagnosis: 13
Date of Diagnosis: 1967
Location: Minnesota

Diagnosis: I remember my girlfriend and I were practicing cheer-leading routines as we were about to enter 7th grade and we wanted to be cheerleaders. All of a sudden I hit my knee on my bicycle bar and from that point on, the pain would grow each day. Finally my mom sent me to a chiropractor and he told my mom to get me to an oncologist. The oncologist told my mom that I most likely had osteogenic sarcoma and he recommended that she take me home to die. My family doctor, who was bull headed and stubborn, made arrangements for me to get treatment at St. Mary’s hospital in Rochester MN. Read more

Andrew’s Story

Osteosarcoma at the tibia
Age at Diagnosis: 19
Date of Diagnosis: 1984
Location: United Kingdom
Hospital: Middlesex-London
Team: Dr Jelliffe, Mr Sweetnam and later, Prof Cobb

Diagnosis: I was born in Zambia in 1965 and am the youngest of three boys. My brothers are quite a lot older than me and used to give me grief when I was little. This changed over the years and they became extra fathers for me, guiding me, or trying to, through my teenage years. My parents sent me off to school when I was six years old; it must’ve been as hard for them as it was for me. Anyway, I continued to go away to school for the rest of my education. I was a normal teenager like any other; stroppy, sometimes rude to one’s elders and betters, but otherwise pretty normal. I played sport for the school, enjoyed the outdoors and probably didn’t do enough studying.

During 1984, my life was going in a steady direction towards a hopeful career in the RAF when everything suddenly fell apart. I started to get discomfort in my right knee. Read more

Jennifer’s Story

Osteosarcoma at the Proximal Tibia
Age at Diagnosis: 13
Year of Diagnosis: 1989
Location: Florida, USA

Diagnosis: I was thirteen and active in dance and track without a worry in the world, until my right knee started aching. It continued and worsened and my parents thought I had torn a ligament, but unfortunately that wasn’t the situation. I had a MRI and they found a grey area, then I went to the hospital for a biopsy which showed it to be malignant, and almost instantly I was put in the hospital to start my chemo treatments. This was the most awful experience. I wouldn’t wish it upon anyone, especially a teenager. I had no clue as to what was happening. I didn’t even know I would lose my hair until it started to fall out. I wasn’t the nicest child; I didn’t understand why this was happening to me and I was quite bitter at the time. Read more

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