Kevin's Story: leukemia

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Kevin 's childhood experience with leukemia

My name is Kevin, I am 26 years old, I live in Missouri and I am single. I am a 22-year survivor of leukemia. I was diagnosed when I was two years old. I had been sick occasionally throughout early childhood, and my parents had noticed one afternoon that I had bruises all over my body, which of course was completely uncommon, and also had just come over a case of flu. So my parents took me in to a pediatrician and they ran some tests and suspected that I might have leukemia, and then they took me to a local hospital in the Kent City area and that was where I was diagnosed that I had ALL leukemia. I think one of the most important things for me is probably lucky that I was diagnosed with leukemia at such a young age and actually had it at such a young age. I think the misnomer that people have is that because I was so young I don't remember any of it, and that it was probably not an important thing for me. But even though I was diagnosed when I was two, I do remember a lot of it, particularly the time that I had to spend in the hospital. As soon as I was diagnosed and went to the local hospital for to get some more diagnosis, I was put in the hospital for ten days, and then managed to be in and out of the hospital for ten day terms up until the time that I was about four years old.

Basically, the arrangement for treatment meant that for the first two years I was on a lot of chemotherapy, and then after the first two years, I went on radiation pretty much for about a year. I guess one of the neat things about being such a young survivor at that age was that I got to play a part in a lot of the treatments that sometimes are used still today and sometimes are not used. So I guess in one aspect I was a guinea pig but in another aspect, hopefully I helped a whole lot of people. So from the time I was two to five, I was in treatment. Luckily I went into remission when I was about five. From the time that I was five to eight, I went in on a monthly basis for checkups. And from eight to fourteen, I was put on a study to watch the long term effects. And after the age of fourteen, it was optional for me to come back and continue a longitudinal study and I decided that was something I did not want to do.

Surviving cancer

To be more specific about my illness, when I was two and I was first diagnosed, I had a white count of over 380,000 compared to the several thousand I was supposed to have. So we knew immediately there was something wrong and that was a high indication that I probably did have leukemia. I think some of the most important things that happened to me is realizing that I'm very fortunate to be a survivor. At that time the survival rate for any type of leukemia was about 20%. I know there are a lot of children who went through the program, as I did, who did not make it. I feel very fortunate about that. I think it's very important for people to know that cancer is survivable, it doesn't matter what age you are, that cancer does not just pick on elderly people or people with bad health or whatever, sometimes it just happens. But it's important to know that everybody can make it through.

I think the best advice I could probably give anybody about surviving cancer is the battle is about 99% mental. Of course, support for the chemotherapy or radiation or whatever treatment that you choose to go. But if you don't think that you're going to make it through, or if you think you have to struggle through it, you're going to have a very tough time trying to overcome the disease. And I think that's why I was fortunate that I was so young that I had not choice but to be positive and optimistic about it, and I think that's what got me through it. Also the fact that I have a really close family and through that whole time they were always there to support me. I think some of the most painful experiences I had through the whole ordeal was the pain. A lot of time people say that the treatment is worse than the disease itself, and I can certainly attest to that. You know, being five years old and constantly being poked and prodded, really left me a bad feeling for hospitals and clinics and things like that. I still to this day do not like to visit those places and will only go there if I have to.

A different perspective

I think another thing that's given me a better look at the situation is that my grandfather just recently died of cancer, and it's a little bit different, being a cancer patient and then watching somebody else have to go through that. And I think that no matter what you do in your life, that not only can, you know work to fight the disease, but sometimes we have to work and fight for other people who can't fight any longer. And certainly that's the case with lots of people who have terminal cancer sometimes their job is just to sit there and support them and make them feel comfortable, and then after their time passes, go out there and try to prevent other people from having this disease, too.

I think some of the other problems that I have facing me is that because I was hit at such a young age, I tend to be probably a little bit shorter than I'd like to be, and probably weigh a little bit less than I'd like to, and never have really regained probably the physical stature that I'd really like to be at. But you know there are certain aspects of things that we can't change anymore, but it's okay to know that you went through some changes in your life and sometimes things are not gonna be the same. But it's okay, and you know, we go on with our daily lives. A lot of people ask me, "do you worry that you're gonna get cancer again, are you worried that it's gonna recur? You know you've got your whole life to live and since you had it so young, it's quite possible that you might get it again." And I say, "Yes it is, it is quite possible I might get it again. But I know that I beat it one time and I'm sure I could beat it again. But I don't sit around and think about it on a daily basis, whether I'm going to get the disease again. I just have to live my life and go on, and I encourage everybody to do that. I try not to think about it too much and I generally don't speak about it in public a lot unless I'm asked, and then I'd be more than happy to share. But that's kind of the extent of my story.