Gary L.

Diagnosis: Osteosarcoma in the right arm, March 17, 1994
Treatment: Year of chemotherapy, surgery, six weeks of radiation, bone allograft

I had a sore arm with a little swelling. I had been playing basketball six days a week, so I thought it was tendonitis. I went to a local orthopedic surgeon, who took X-rays. After that, he came back into the room and looked like he’d seen a ghost. He really didn’t say much in front of me. He told my mother he wanted me in Boston the next morning. I was 13 1/2. It really didn’t hit me at first. I was trying to make sense of it all. Everything goes really quickly and it doesn’t seem real. I didn’t really know anyone who had cancer, so it was kind of scary.

Susan (Gary’s mother): It’s an absolute shock when you’re told that your child has cancer. It’s like you hear what the doctor is saying, but you don’t believe it. You hear the words but you try to convince yourself that it just couldn’t be true. People are talking to you and it seems like everything is just echoing in your head.

Gary: The very next morning I saw Dr. Mark Gebhardt and I had a number of tests - X-rays, MRI, bone scans, CT-scan. Just a few days later, I had a biopsy on the tumor in my arm, which was positive. They also saw a spot on my lung so I had a painful biopsy on that. Fortunately, that turned out to be nothing. From the minute it all began, things just seemed to move very fast. It is so overwhelming that it was easier to just get through one day at a time and not to think about all that was ahead of me. I wouldn’t allow myself to think about death. I was still having a hard time believing what was actually going on.

Susan: I believe that everyone has their own survival mechanism. Gary’s was to just shut off everyone who tried to explain what was going on. He would always say, “Don’t say anything until my mother is here to listen.” He knew he couldn’t hear it all. He reserved his strength to get through all he faced. It was tough on him.

Gary: I didn’t feel sorry for myself at all. The doctors and nurses at the hospital were all so nice to me and tried to help me whatever way they could. They made me feel special.

Susan: The people at MGH were wonderful! I really don’t think we could have gotten through this without all these special people.

Gary: I talked with my friends on the phone, and a few of them would come to visit me at home. I knew normal life had to change and I had to focus on doing what I had to do to get rid of the cancer. I was halfway through seventh grade when this all happened. First I had six chemo treatments, in an attempt to shrink the tumor as much as possible. Then July 1, I had surgery to remove the diseased bone from my arm. My bone was replaced with a donor bone. The one good part about being at MGH at this time - the Fourth of July - was that the nurses pushed my bed over to the window and I got to watch the fireworks on the Charles River. I had the best seat in the house. Right after surgery I had a body cast from the waist up but just for five days because it was so heavy I could barely stand up. Then I had an apparatus to completely immobilize my arm. It was a brace that had a pipe coming out from a strap on my hip that held my arm way up and out in front of me. The hardest part was that I had to sleep like that. My dad, Gary Sr., bought every possible cushion and pillow he could think of to help me get comfortable. I wore this brace for six months right through the hot summer. I didn’t let the heat bother me. I went swimming with it on. My mother used to dry it off with the blow dryer when I was done in the pool.

Susan: We took pictures of Gary from the beginning, hoping that some day he would be able to look back at this with the same amazement we all had while watching him going through it.

Gary: Chemo was wicked bad. I was hospitalized while getting it. I got really sick. I couldn’t eat at all while I was in the hospital. It was the smell, the environment. They tried all sorts of drugs for nausea. Some made me feel worse. I didn’t like those drugs because I’d feel all screwed up in the head. I’d be sick for four or five days after chemo. I would lose some weight, but after I felt better I would go back to eating normally. I think that helped me stay healthy. That went on for a year. Toward the end of chemo it got a lot worse. I started to dread making the trip to the hospital. I’d feel sick when we even got close. By the time we would walk in the front door, I was ready to throw up. Once during a checkup, the doctor started talking to me and I threw up. We laughed. I made a lot of good friends in the hospital. Many had cancer. It made me feel better because there were others like me.

Susan: Gary got close to some kids on our floor. A few lost their battle with cancer and that was extremely difficult. I think as Gary gets older, he is coming to terms with these losses. He is also learning to accept how his life has changed.

Gary: I now have some limitations. I can’t play sports, I can’t really lift anything with my right arm and I have to avoid being hit. I have had a few problems with my bad arm. The donor bone has broken a few times, requiring reconstructive surgery. Now I have a metal ball in my shoulder that is connected to a metal rod that goes down to just above my elbow.

Susan: It takes a long time for Gary to heal. Every time he has surgery, I worry more about infection in his arm than anything else.

Gary: I take real good care of my arm. I constantly worry about it breaking again. Once I sent my brother, Joe, flying across the room. Without thinking, he put his hand on my arm. I had to get him away. I didn’t even think about what I was doing. I felt really bad after I did it, but that is how I am with my arm.

Susan: Poor Joe. All of this was very difficult for him. He was only 11 when his brother got sick. It was difficult because there was no continuity in his life. Joe never knew whose house he would be at when Gary was in the hospital. He was in a brand new school and once he said, “All everyone wants to know is, ‘How’s Gary?’ No one wants to know how I am.” It broke my heart. Most people forgot about Joe. We worked very hard to make him part of our family’s survival. Joe is a wonderful brother and he absolutely adores Gary. Joe had to write a story in school a couple of years ago about a hero. He wrote about his brother, Gary!

Gary: This whole thing has made us closer. Joe is not only my brother, he’s my best friend. He’s always there for me when I need him. All that I have been through has made me appreciate life more. I don’t take risks. I’m very cautious. Life is too important. I know how quickly it can be gone. My friends have been great. It’s nice that they don’t treat me differently. I am who I am and that’s good enough for them. I also have a wonderful girlfriend. I’m lucky that she puts up with all that goes on in my life - the many surgeries, the constant doctor appointments and the limitations I have because of my arm. I can be open about my feelings with her. She lets me talk about the past five years when I need to let it out. I don’t know what I would do without her. I do still have times that I feel like no one completely understands how I feel. Once you have spent an entire year in and out of the hospital fighting cancer, you are a different person and others sometimes have a hard time looking at things the way you do.

Susan: Gary has a very strong faith. We all do and I believe that gave us the strength to make it through such tough times.

Gary: My faith helped me keep a positive attitude and to never give up hope. Laughing also worked. My mother would tell me, “If you can find one thing in every day to laugh about,we can make it through this.” She was right. My family was wonderful through it all. They were and still are always there for me. I don’t think I could have made it without them. We are all very close.

Susan: I think Gary’s story is special. He not only missed a year and a half of school in the beginning, he had many extensive absences throughout high school because of all the complications with his arm. But because he worked very hard, he was able to graduate with his class from high school. He’s now attending college. It is amazing to look back at the past five years and see all that Gary has gone through. Life does get back to normal. And when it does, you know that you have really survived!

Gary: Actually, life becomes better than normal. I now appreciate the littlest things in life and I don’t take anything or anyone for granted.