WEBVTT

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melt desire for

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a beach

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That's yours.

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Yep, and you owe me $100.

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Steve, could you tell me a little about yourself to help us understand who you are?

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My name is Steve Swamberg and I'm 11 years old.

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I go to Cassette School and I'm in sixth grade and I live in the Grange.

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And how many people are there in your family?

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Six.

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Six, and who are they?

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Julie, Wendy, and Cory. They're my sisters and then my mom and dad.

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And you're the youngest of all the children?

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Yes.

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What kind of things do you like to do besides at school?

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I like to play baseball and go swimming, do a lot of sports.

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A lot of sports?

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Yeah, and then I've got an airplane and then I fly and then I've got a chemistry set and I work with that.

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Watch a lot of television?

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Pretty much.

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Pretty much. What are some of your favorite programs?

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Andy Griffith and the Partridge Family.

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Do you watch sports programs much?

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Yes, I watch almost all of them.

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Which is your favorite baseball team?

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The Cubs.

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Oh, you're a Cubs fan?

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Yeah.

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What are they going to do this year?

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Get about second place.

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About second place. You don't have hopes they'll win, huh?

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Well, they never do.

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They never do, so they won't this year, is that it?

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I see.

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Steve, you have an illness, don't you?

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Yeah.

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Could you tell me what that is?

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It's leukemia.

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Leukemia. And how long have you had that?

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Almost two years.

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Almost two years. What kind of illness is that? What does leukemia do to you?

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Well, it's a blood disease and it usually makes you die.

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It makes you die?

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To what extent is he living a normal life, would you say?

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I'd say completely normal when he's feeling well.

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And really that's most of the time, this recent bout with the shingles and the flu

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and then another infection that set him back or set him down so he couldn't go to school

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and he was very, very tired.

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But the exception is that he's been in the hospital for a long time.

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The exception of that life is very normal.

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Would that be true of the rest of the family, too?

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Yes.

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I think so. The girls, we must have done something right in rearing them

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because I don't know, the older girls especially have just, they've been marvelous.

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When we first told them, we didn't know whether they could cope with it

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or whether they'd be able to treat him normally or whether they'd be over-affectionate

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or whether they would tend to spoil him.

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But they didn't and they were just, were very sad, very sad.

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In fact, one of them said, oh, I really wish it could be me and not Stephen.

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But she never showed on her feelings about it.

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And I'm sure he could tell that they were saddened by it, that they didn't let it overcome them.

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And I think basically it's been quite normal. I just, maybe too normal.

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I don't know whether it's good to be that level. That's the way it's come out.

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I don't know of anything that we really don't do.

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Well, we've taken, we took more vacations than normal.

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We had always thought of going to Florida during spring vacation.

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Well, you know, you don't and something else comes up.

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And we, in this respect, we just decided we are going to go and took the children

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and they had a marvelous time.

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So to that degree, and we went out to Colorado as a friend living out there,

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and we did things that we wouldn't normally do.

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And I think maybe from that standpoint, we've done more.

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We've, I think life's been richer. Maybe we've made it a little richer because of it.

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But as far as the way we live or everyday life, I don't think it's changed a great deal.

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Let me ask, what is your understanding, your current understanding of what the outcome is with leukemia,

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of how it is today, sort of?

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Do you have a good feel for that?

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Yes, I do. I feel that eventually, usually it ends in death.

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I think the, over the past few years, the improvements have been so great that a child can live relatively normally and happily.

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But that you always have to keep that in the background, that very few have lived for any long periods of time,

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that there are some long-term survivors, but very few. I understand that.

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This is not something that preoccupies you a good deal?

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What, the cure?

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No, the fact that he may not survive. It's not on your mind a lot or?

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Oh, I think it's always on your mind.

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It is.

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I think so. It's in the back, but I think it's always there.

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I don't, I forget about it for some days, you know, and you don't think about it, but I don't, there aren't many days that go by, but it's not there to a degree.

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Is this on your mind fairly commonly too?

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Just occasionally during the day, when you're busy you don't think about it.

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Even when, even when we're with him, things are going well, he's feeling well.

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We don't think about it, or I don't think about it at the time.

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But then when, I say when the day slows down and you start occasionally thinking into the future,

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not, not spending a lot of time thinking about it because there's not much to be gained there.

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You don't, I don't try to dodge it, I don't think, and I don't try to dwell on it.

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I think something that I and we both do is thoroughly enjoy when he's feeling good, and he so enjoys when he's feeling good.

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And without planning it, we live from day to day and totally enjoy day to day.

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You have any idea how, how do you get leukemia?

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I don't know.

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You don't know?

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No.

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Have you asked?

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No.

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No. Do you think anybody knows?

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No.

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No, I don't think so either.

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Nobody just knows. Did you ever feel that, wonder, you know, sort of why did I get leukemia?

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Well, I don't remember, I may have.

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You may have?

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But I don't remember.

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You don't remember that?

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No.

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Maybe you feel sometimes it isn't fair?

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Yeah.

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I bet you do, you know.

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When Steve was first told about leukemia, was the possibility of death mentioned fairly early?

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Well, he thought about the possibility, yes, fairly early, because when he came home that day and read more about leukemia itself, he said, came to me and said,

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it says in that article that most people die of leukemia.

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And I said, yes, some people do die of leukemia.

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And then I went on to say that some people die of, you know, if you read an article on diabetes, they would also die of diabetes and they die of various things.

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And I said, yes, yes, some people do.

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And he said, am I going to die?

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And at that point I, I suppose a little whimsical, and I said, you'd better not.

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Steve, I wonder if you can give me some idea, what are some of the things that have helped make you so comfortable with your illness?

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My mom, like, she's, if I like sad, she'll always talk to me and make me feel better.

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She'll say, not to worry and just take what comes, because it'll be over soon.

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And months later the question came up again.

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And when he was feeling very depressed and having to go back and go back and got very angry about it, and he said, I'm never, you know, never going to be able, I'm never going to get over this.

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He said, they may find something in four or five years, but it's not going to be in time for me.

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He said, I know that.

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And he said, I'm just, but he was angry at the time.

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Well, you see, the doctor asked him, what bothers you most?

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I remember you saying it and he said, I'm not going to live very long.

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So am I correct if I say that even though you have this disease, things are pretty normal, except when you have to go to the hospital and have a test or when you feel bad,

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and except sometimes at night when you lie in bed and you begin worrying about things.

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How often does that happen at night? Every night or once in a while?

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Just about every two weeks, 10 days, somewhere around there.

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Otherwise you just normally go to bed?

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Yeah.

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Do you dream a lot?

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Yeah.

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What sort of things do you dream about?

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I just dream like I go to my friend's house and move and just things like that.

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I don't dream about the hospital.

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You don't dream about the hospital or about being sick or about going to heaven or anything like that?

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Miss One-Wig, would you have any thoughts with respect to sources of strength?

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Well, I have to admit, I think a lot of it was just saying to myself, now, are you going to come through it?

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Are you going to be mentally stable?

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Or what are you going to do?

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Maybe it's just the stubbornness that I have in me that I wasn't going to let it destroy me.

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I think one of the things I can feel is that it's bigger than me or bigger than Steve or bigger than Jenny and I.

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We can't do much about it except make life as sensible and as enjoyable to everybody with the situation we've got.

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Another thing I think is the fact that we felt secure from the very beginning that medically we'd done, I mean, he was where he should be.

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You know, we did a lot of checking and when it first happened to us, we checked around, called everybody that we knew that had any connection with the medical profession.

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Said, what do you know about this? Where should he be?

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And I think that helps if you finally come to the point where you say, all right, now he's at Children's, he's where he should be.

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I don't think that we could feel the way we do or could cope with it as we, however we're coping with it, if we didn't have the faith in Children's Hospital.

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I think that's ultimate, terribly important.

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If we felt he wasn't getting good treatment there, I don't think we could feel secure.

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I think we'd be out hunting for something better and we don't have that feeling.

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What's kind of the worst thing about having leukemia?

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No, no, no, just like thinking of going to the hospital and getting the bone rails and stuff.

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It's more that than thinking about dying or something like that?

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It's more worrying about going to the hospital?

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Well, I don't worry about it, just that it hurts.

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The pain.

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Yeah, and then sometimes I can't take June or things like that.

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I know they absent a lot from school because of that.

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And you don't like that?

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No.

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You'd rather be just sort of like a regular kid and do everything?

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Yeah.

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So that it isn't dying that really fills your mind with thoughts or anything like that?

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Both of you do seem to have your feelings well in hand. Has that been the case through this?

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I don't know. I just feel.

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Being sort of technically oriented or factually oriented, I don't try to fight a fact.

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He's got it. He's got good care. We think he's got as good a care as he can get.

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The feelings come. I don't usually let myself have the feelings and tell them by myself.

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Or with Jenny if we're talking about it.

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Having him in hand, I guess so.

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I feel or I think that if I allowed myself to feel too much because it's nothing but a bad situation,

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I think I'd hurt myself and hurt Steve.

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And so I kind of pull myself short of allowing myself to have that much feeling.

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I fear for the time when it's going to get worse and when the ultimate, when he dies.

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But I don't spend much time thinking about it.

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I just, when it comes, it'll be time enough and I'll be affected enough by it then.

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I'm not so sure. I did at the beginning. I have my feelings in hand.

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I think at the very beginning I tended to think what it was doing to me.

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And in fact I rushed into Children's one morning with something that was on my mind

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and said to Dr. Borges, why aren't you doing thus and so?

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I pretty much came out of that meeting realizing that I was thinking about what was happening to me

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and not what was happening to Steven.

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And I think once I got over that, even though I think it's important what happens to our feelings too,

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but once I realized that Steven really is the one who's going through it all,

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he's the one that's taking the pain and the disruption of his life.

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I think right now I don't believe in the mystical or the magical or the,

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oh like Jenny said, in God controlling things or directing things.

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I don't believe in life after death as it was taught or I don't believe in life after death.

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You mentioned Steve that you might die with this illness.

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Yeah.

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What do you think is going to happen to you when you die?

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I'll go to heaven.

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You're pretty sure you'll go to heaven?

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Yeah.

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And maybe that helps you feel comfortable too?

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Yeah.

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As far as God is concerned, I've always interpreted it as, for me it's a,

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a spirit of love or a presence of love and feeling for people,

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but not a human type of God who reaches down and does things for us or controls our lives.

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But I think that takes away a lot of the guilt because there is,

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it's not something you've done because I don't believe things happen to us in life.

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This sort of thing happens because of something that you have done or haven't done.

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So then, so then that isn't a possibility.

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If you don't believe in a God who does that sort of thing to you,

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you don't believe in a God who would, or you don't believe that somebody would punish your child

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for something that you've done.

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I have none of that feeling at all.

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We're pretty proud of Steve the way he's coping with it.

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Oh, you bet, you bet.

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He's just been marvelous and I think that's one reason we've been able,

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it's been maybe easier for us is because of the way he is.

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And not all children might give us that support that he does.

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When did you first hear that you had leukemia?

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Oh, about a year ago.

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About a year ago.

230
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But you knew you were sick before then.

231
00:15:57.440 --> 00:15:57.900
Yeah.

232
00:15:58.800 --> 00:16:00.880
And what did you think was wrong before that?

233
00:16:01.180 --> 00:16:06.780
I wasn't sure. I thought I just got sick and they were going to give me some medicine and let me go.

234
00:16:08.040 --> 00:16:10.720
Are you glad that people told you you had leukemia?

235
00:16:11.200 --> 00:16:11.640
Yeah.

236
00:16:12.800 --> 00:16:15.360
And do you think it would have been better if they told you sooner?

237
00:16:15.480 --> 00:16:15.880
No.

238
00:16:15.980 --> 00:16:16.760
Now, how come?

239
00:16:17.100 --> 00:16:23.640
Because before that I was sick most, a lot of the time and I didn't know what it would be like.

240
00:16:23.720 --> 00:16:28.900
But after a year I lived with it for a year and it wasn't that bad.

241
00:16:29.220 --> 00:16:33.060
And so then I couldn't think that it wasn't that bad.

242
00:16:33.820 --> 00:16:35.700
Do you get treated special in any way?

243
00:16:35.780 --> 00:16:36.120
No.

244
00:16:36.320 --> 00:16:36.640
No.

245
00:16:37.660 --> 00:16:39.880
Do you have any chores that you have to do around the house?

246
00:16:39.880 --> 00:16:40.420
Yeah.

247
00:16:40.700 --> 00:16:41.640
What sort of things are yours?

248
00:16:41.800 --> 00:16:46.860
Well, I take out the garbage and I wash the bathrooms every week.

249
00:16:47.320 --> 00:16:48.100
Does that seem fair?

250
00:16:48.400 --> 00:16:48.780
Yeah.

251
00:16:48.960 --> 00:16:49.240
No.

252
00:16:50.440 --> 00:16:56.260
When you go to the hospital for tests, does it kind of scare you that you might have to stay or is that a big worry?

253
00:16:56.840 --> 00:17:04.060
I usually worry about how long I'm going to get before I have to go back again so I won't be sore.

254
00:17:06.180 --> 00:17:08.580
So you think you will have to go back in again?

255
00:17:08.580 --> 00:17:14.520
Yeah, but I just want to, I just hope that it's going to be like maybe four weeks or so instead of a week.

256
00:17:15.560 --> 00:17:16.040
I see.

257
00:17:16.080 --> 00:17:20.120
So the kind of thing that bothers you is you hope that the next visit won't be for four weeks?

258
00:17:20.260 --> 00:17:20.740
Yeah.

259
00:17:21.260 --> 00:17:23.200
So there will be more time in between.

260
00:17:24.260 --> 00:17:26.520
What do they do to treat your leukemia?

261
00:17:27.080 --> 00:17:31.760
Well, they give me methotrexate, Lincolstein, prednisone.

262
00:17:31.760 --> 00:17:36.080
They give me a lot of pills and I get some shots sometimes.

263
00:17:36.080 --> 00:17:37.760
Do you know what all those things are?

264
00:17:38.640 --> 00:17:38.920
No.

265
00:17:39.020 --> 00:17:39.820
They're just medicines?

266
00:17:40.180 --> 00:17:40.180


267
00:17:40.320 --> 00:17:41.460
But you don't know what kind they are?

268
00:17:41.520 --> 00:17:41.840
No.

269
00:17:42.600 --> 00:17:45.020
And do the medicines do any harm to you too?

270
00:17:45.640 --> 00:17:46.060
No.

271
00:17:46.620 --> 00:17:50.140
The doctor said that they do to some children but they haven't done much.

272
00:17:50.400 --> 00:17:51.620
They haven't hurt me much.

273
00:17:52.640 --> 00:17:54.080
Did you also have some radiation?

274
00:17:54.400 --> 00:17:54.860
Yeah.

275
00:17:55.640 --> 00:17:56.360
What was that like?

276
00:17:57.280 --> 00:18:03.300
Well, you couldn't feel it so that was somewhat better than getting spinal taps and bone marrow.

277
00:18:04.280 --> 00:18:06.240
Spinal taps and bone marrow are pretty painful.

278
00:18:06.840 --> 00:18:13.620
Well, they are sometimes but sometimes if my back isn't sore then they come out pretty good.

279
00:18:13.840 --> 00:18:14.680
Then they're not too bad.

280
00:18:14.880 --> 00:18:15.820
Have you had a lot of those?

281
00:18:15.920 --> 00:18:16.320
Yeah.

282
00:18:16.740 --> 00:18:18.920
About how many bone marrow would you think you've had?

283
00:18:19.380 --> 00:18:20.060
Just as a guess.

284
00:18:20.600 --> 00:18:21.800
About 30 maybe.

285
00:18:21.880 --> 00:18:22.620
About 30?

286
00:18:22.760 --> 00:18:23.120
Wow.

287
00:18:23.960 --> 00:18:24.720
That is a lot.

288
00:18:24.840 --> 00:18:25.200
Yeah.

289
00:18:25.300 --> 00:18:26.920
And how many spinal taps would you get?

290
00:18:27.280 --> 00:18:30.440
I've had more than, I've had about 50 of those.

291
00:18:30.620 --> 00:18:31.400
About 50?

292
00:18:31.520 --> 00:18:32.500
I think so.

293
00:18:32.500 --> 00:18:33.600
That's an awful lot.

294
00:18:34.380 --> 00:18:34.380


295
00:18:35.080 --> 00:18:35.420
You know.

296
00:18:35.820 --> 00:18:37.440
Didn't you have some trouble with your hair too?

297
00:18:37.560 --> 00:18:37.920
Yeah.

298
00:18:38.240 --> 00:18:39.080
What was that about?

299
00:18:39.300 --> 00:18:45.680
It just falls out because it needs the cells every day and the radiation kills some of

300
00:18:45.680 --> 00:18:47.320
the cells so it just falls out.

301
00:18:47.500 --> 00:18:49.120
The hair falls out from the radiation?

302
00:18:49.160 --> 00:18:49.460
Yeah.

303
00:18:50.560 --> 00:18:51.900
And what do you do about that?

304
00:18:52.260 --> 00:18:52.920
I wear a wig.

305
00:18:53.000 --> 00:18:53.760
You wear a wig.

306
00:18:54.640 --> 00:18:56.620
And under your wig you have no hair now?

307
00:18:56.940 --> 00:18:58.420
Right now it's coming back.

308
00:18:58.420 --> 00:18:59.400
Oh, it is coming back.

309
00:18:59.500 --> 00:19:00.020
That's good.

310
00:19:00.120 --> 00:19:00.920
I bet you're glad.

311
00:19:00.920 --> 00:19:01.640
Yeah.

312
00:19:02.140 --> 00:19:04.640
Well, you're kind of upset about your hair falling out?

313
00:19:04.680 --> 00:19:05.120
Yeah.

314
00:19:05.300 --> 00:19:05.600
Yeah.

315
00:19:06.580 --> 00:19:08.080
Do other kids know about that?

316
00:19:08.540 --> 00:19:09.060
Yeah.

317
00:19:09.220 --> 00:19:12.220
The kids at school know it but they don't mind it all.

318
00:19:12.300 --> 00:19:12.940
They don't mind?

319
00:19:13.340 --> 00:19:13.340


320
00:19:13.660 --> 00:19:14.980
Have you been teased about it?

321
00:19:15.320 --> 00:19:22.540
Well, some kids that, like, in other grades they ask me and my friends just say, oh, just

322
00:19:22.540 --> 00:19:25.020
forget it because they're real nice.

323
00:19:25.360 --> 00:19:26.540
Your friends are real nice?

324
00:19:26.680 --> 00:19:27.180
Yeah, they understand.

325
00:19:28.020 --> 00:19:29.660
Do any of your sisters ever tease you about that?

326
00:19:29.660 --> 00:19:30.000
No.

327
00:19:30.000 --> 00:19:31.280
They don't tease you, huh?

328
00:19:32.400 --> 00:19:32.900
No.

329
00:19:33.700 --> 00:19:37.900
Steve, I really think you're the most remarkable fellow I've really enjoyed talking to you.

330
00:19:37.960 --> 00:19:39.440
Let's get back to the game.

331
00:19:39.660 --> 00:19:40.580
Okay, your turn.

332
00:19:43.320 --> 00:19:47.580
What we've just seen is a family that copes remarkably well.

333
00:19:48.420 --> 00:19:54.260
I wonder how many of us in watching this and thinking about Steve have wondered about our

334
00:19:54.260 --> 00:20:00.120
own ability to cope and sometimes wondered about whether our problems are too petty to

335
00:20:00.120 --> 00:20:01.960
get upset to the extent that we do.

336
00:20:27.100 --> 00:20:28.520
Thank you.