Helena: child survivor My name is Helena, I'm 21 years old, I'm from Pennsylvania. I currently attend college. I'm going into my fourth year this year. I was diagnosed in 1984 in February, it was actually two weeks prior to my fifth birthday. I actually celebrated my birthday in the hospital. I had been sick for several weeks, which led to the diagnosis, and when they finally figured out what it was, that was two weeks before my fifth birthday. Throughout, my diagnosis was Stage III neuroblastoma, which is a cancer of the young nerve cells. I had chemotherapy, radiation and a transplant throughout that year in 1984. The radiation was used to shrink the tumor down to an operable size, and the chemotherapy was used to rid my body of what was left of the cancer. A pioneering event Towards the middle of 1984, the doctors decided to do a preventative bone marrow transplant because they knew that if my cancer came back, it would be very hard to make me go back into remission, and they weren't sure that it would work. So I was actually supposed to be the first person with my type of cancer to have what's called a preventative autologous transplant, which means, that it would have been my own bone marrow, because no one else in my family was a match for me. And they wanted to do it as a preventative measure to try to make the odds better that the cancer would not come back. I wasn't able to be the first person having that done because I had been born with a hole in my heart. When I was born the doctors decided to wait until I was a little older to repair the hole so that I would have better chances of making it through the surgery. The hole was called an atrial septal defect and so before I could have the bone marrow transplant and be strong enough to have better chances of surviving the transplant, the hole in my heart needed to be fixed. So I wasn't the first but I was one of the early patients to have the transplant procedure done. Throughout the three months I was in the hospital for the transplant, from October to roughly December, my mother stayed with me the whole time, in a little tiny cot behind the plastic bubble that I was basically in, and Dad came to visit me every night after work, and my parents were both great supports, of course at five years old what does a little kid want to do but play, and watch TV and have fun all day, and here I was being sick in the hospital. My aunt, my mother's sister, came out from California to stay with my sister while I was in the hospital for the three months. And my sister came to visit me whenever she could, you know, she was a little older than I was, she was eight years old at this time. So it was hard on her too because she didn't really understand what was going on, but she did what she could to keep my spirits up. Make a wish Another thing that really kept me going when I was sick, the Sunshine Foundation had offered me a wish, and my wish was to go to Disney World, of course, what does every five year old want to do but go to Disney World. So they had called my mom up and said whenever I was well enough to go whatever I wanted to do, they would grant me the wish. And even though I wanted to go to Disney World, they said as soon as I was well enough to make the trip, the planes would be --- and everything would be set and we could go. And they kept their word and we went. I believe it was the next year when I was six years old and we went to Disney World and we had a wonderful time, it was such a great experience. And it was something that really had kept me going the whole time, you know, when I didn't want to take my medicine, my mom would say, Come on Helena, take your medicine so you can get better and we can go to Disney World and see Mickey. And I thank the Sunshine Foundation for that wonderful opportunity. Giving back to society After the 1984 treatments and the experience was over, my cancer never recurred. So I guess I lucked out and the transplant, preventative measure had worked out. In these days I am doing well. As I said before, I'm a college student, hoping to be a teacher in either preschool or kindergarten. I'm going in to my fourth year, I have one year additional left for my undergraduate studies, and then hopefully from there I'll be able to find a job. The whole experience of having cancer really changed my whole life. Through my hospital and when I was about ten years old I started going to a camp, the cancer camp through my hospital. And I met so many wonderful friends and counselors and just people from the hospital and from the camp that many of them I still keep in touch with today. I went there all the way up until, I went there for about seven or eight years, including two years of being a junior counselor. And the only reason I'm not doing it right now is that the dates conflicted with school. But it's kind of I think my way of getting back, that's how I felt when I was the junior counselors. And I felt it was my way of giving a little bit back to these kids who, a lot of them had just been diagnosed and were still going through treatment. I don't know exactly what they're going through but I know a little bit. I know what chemo is like and I know what radiation is like and I know it's no fun to be sick. So it was kind of my way of helping them out and being there for them. The one thing I've really learned from this whole experience is that you always have to look for the light at the end of the tunnel. There were many, many, many times when people would tell my parents that I wasn't going to make it when I was first diagnosed, they said that I had at most six months to live. And my dad basically was about to throw a chair out the doctor's window when he said that because he didn't want his little girl to die, you know? My parents, I give them a lot of credit, they never gave up. And at the time I was sick, a lot of treatments were experimental but they never lost hope, they always said, well, if we don't do this then she'll most likely basically die, but if we try this then, at least she'll have a chance. And I think that's what I, the biggest lesson that I've learned from this whole thing is that if you don't try at all, then you're almost guaranteed of failure. But if things aren't looking good but there's something out there that you can try that even if it may be experimental you're willing to go for those risks, and otherwise the outcome looks grim and if you go for it and it works, then that's wonderful. You know, I feel that because of the experimental drugs that I was given and the experimental procedures, that's what saved my life. That's why these days I really you know I don't give up without a fight. And even if I don't win in the end if I put up a good fight, then I believe that's what counts. |
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