Coping

melt desire for a beach That's yours.

Yep, and you owe me $100.

Steve, could you tell me a little about yourself to help us understand who you are? My name is Steve Swamberg and I'm 11 years old.

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

And how many people are there in your family? Six.

Six, and who are they? Julie, Wendy, and Cory.

They're my sisters and then my mom and dad.

And you're the youngest of all the children? Yes.

What kind of things do you like to do besides at school? I like to play baseball and go swimming, do a lot of sports.

A lot of sports? 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.

Watch a lot of television? Pretty much.

Pretty much.

What are some of your favorite programs? Andy Griffith and the Partridge Family.

Do you watch sports programs much? Yes, I watch almost all of them.

Which is your favorite baseball team? The Cubs.

Oh, you're a Cubs fan? Yeah.

What are they going to do this year? Get about second place.

About second place.

You don't have hopes they'll win, huh? Well, they never do.

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

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

Could you tell me what that is? It's leukemia.

Leukemia.

And how long have you had that? Almost two years.

Almost two years.

What kind of illness is that? What does leukemia do to you? Well, it's a blood disease and it usually makes you die.

It makes you die? To what extent is he living a normal life, would you say? I'd say completely normal when he's feeling well.

And really that's most of the time, this recent bout with the shingles and the flu and then another infection that set him back or set him down so he couldn't go to school and he was very, very tired.

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

The exception of that life is very normal.

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

I think so.

The girls, we must have done something right in rearing them because I don't know, the older girls especially have just, they've been marvelous.

When we first told them, we didn't know whether they could cope with it or whether they'd be able to treat him normally or whether they'd be over -affectionate or whether they would tend to spoil him.

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

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

But she never showed on her feelings about it.

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

And I think basically it's been quite normal.

I just, maybe too normal.

I don't know whether it's good to be that level.

That's the way it's come out.

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

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

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

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

And we, in this respect, we just decided we are going to go and took the children and they had a marvelous time.

So to that degree, and we went out to Colorado as a friend living out there, and we did things that we wouldn't normally do.

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

We've, I think life's been richer.

Maybe we've made it a little richer because of it.

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

Let me ask, what is your understanding, your current understanding of what the outcome is with leukemia, of how it is today, sort of? Do you have a good feel for that? Yes, I do.

I feel that eventually, usually it ends in death.

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

But that you always have to keep that in the background, that very few have lived for any long periods of time, that there are some long -term survivors, but very few.

I understand that.

This is not something that preoccupies you a good deal? What, the cure? No, the fact that he may not survive.

It's not on your mind a lot or? Oh, I think it's always on your mind.

It is.

I think so.

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

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.

Is this on your mind fairly commonly too? Just occasionally during the day, when you're busy you don't think about it.

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

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

But then when, I say when the day slows down and you start occasionally thinking into the future, not, not spending a lot of time thinking about it because there's not much to be gained there.

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

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.

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

You have any idea how, how do you get leukemia? I don't know.

You don't know? No.

Have you asked? No.

No.

Do you think anybody knows? No.

No, I don't think so either.

Nobody just knows.

Did you ever feel that, wonder, you know, sort of why did I get leukemia? Well, I don't remember, I may have.

You may have? But I don't remember.

You don't remember that? No.

Maybe you feel sometimes it isn't fair? Yeah.

I bet you do, you know.

When Steve was first told about leukemia, was the possibility of death mentioned fairly early? 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, it says in that article that most people die of leukemia.

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

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.

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

And he said, am I going to die? And at that point I, I suppose a little whimsical, and I said, you'd better not.

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

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

And months later the question came up again.

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.

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

He said, I know that.

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

Well, you see, the doctor asked him, what bothers you most? I remember you saying it and he said, I'm not going to live very long.

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

How often does that happen at night? Every night or once in a while? Just about every two weeks, 10 days, somewhere around there.

Otherwise you just normally go to bed? Yeah.

Do you dream a lot? Yeah.

What sort of things do you dream about? I just dream like I go to my friend's house and move and just things like that.

I don't dream about the hospital.

You don't dream about the hospital or about being sick or about going to heaven or anything like that? Miss One -Wig, would you have any thoughts with respect to sources of strength? Well, I have to admit, I think a lot of it was just saying to myself, now, are you going to come through it? Are you going to be mentally stable? Or what are you going to do? Maybe it's just the stubbornness that I have in me that I wasn't going to let it destroy me.

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.

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

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.

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.

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

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.

I think that's ultimate, terribly important.

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

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

What's kind of the worst thing about having leukemia? No, no, no, just like thinking of going to the hospital and getting the bone rails and stuff.

It's more that than thinking about dying or something like that? It's more worrying about going to the hospital? Well, I don't worry about it, just that it hurts.

The pain.

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

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

And you don't like that? No.

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

So that it isn't dying that really fills your mind with thoughts or anything like that? Both of you do seem to have your feelings well in hand.

Has that been the case through this? I don't know.

I just feel.

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

He's got it.

He's got good care.

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

The feelings come.

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

Or with Jenny if we're talking about it.

Having him in hand, I guess so.

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

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

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

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

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

I'm not so sure.

I did at the beginning.

I have my feelings in hand.

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

And in fact I rushed into Children's one morning with something that was on my mind and said to Dr.

Borges, why aren't you doing thus and so? I pretty much came out of that meeting realizing that I was thinking about what was happening to me and not what was happening to Steven.

And I think once I got over that, even though I think it's important what happens to our feelings too, but once I realized that Steven really is the one who's going through it all, he's the one that's taking the pain and the disruption of his life.

I think right now I don't believe in the mystical or the magical or the, oh like Jenny said, in God controlling things or directing things.

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

You mentioned Steve that you might die with this illness.

Yeah.

What do you think is going to happen to you when you die? I'll go to heaven.

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

And maybe that helps you feel comfortable too? Yeah.

As far as God is concerned, I've always interpreted it as, for me it's a, a spirit of love or a presence of love and feeling for people, but not a human type of God who reaches down and does things for us or controls our lives.

But I think that takes away a lot of the guilt because there is, it's not something you've done because I don't believe things happen to us in life.

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

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

If you don't believe in a God who does that sort of thing to you, you don't believe in a God who would, or you don't believe that somebody would punish your child for something that you've done.

I have none of that feeling at all.

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

Oh, you bet, you bet.

He's just been marvelous and I think that's one reason we've been able, it's been maybe easier for us is because of the way he is.

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

When did you first hear that you had leukemia? Oh, about a year ago.

About a year ago.

But you knew you were sick before then.

Yeah.

And what did you think was wrong before that? I wasn't sure.

I thought I just got sick and they were going to give me some medicine and let me go.

Are you glad that people told you you had leukemia? Yeah.

And do you think it would have been better if they told you sooner? No.

Now, how come? Because before that I was sick most, a lot of the time and I didn't know what it would be like.

But after a year I lived with it for a year and it wasn't that bad.

And so then I couldn't think that it wasn't that bad.

Do you get treated special in any way? No.

No.

Do you have any chores that you have to do around the house? Yeah.

What sort of things are yours? Well, I take out the garbage and I wash the bathrooms every week.

Does that seem fair? Yeah.

No.

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? I usually worry about how long I'm going to get before I have to go back again so I won't be sore.

So you think you will have to go back in again? 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.

I see.

So the kind of thing that bothers you is you hope that the next visit won't be for four weeks? Yeah.

So there will be more time in between.

What do they do to treat your leukemia? Well, they give me methotrexate, Lincolstein, prednisone.

They give me a lot of pills and I get some shots sometimes.

Do you know what all those things are? No.

They're just medicines? But you don't know what kind they are? No.

And do the medicines do any harm to you too? No.

The doctor said that they do to some children but they haven't done much.

They haven't hurt me much.

Did you also have some radiation? Yeah.

What was that like? Well, you couldn't feel it so that was somewhat better than getting spinal taps and bone marrow.

Spinal taps and bone marrow are pretty painful.

Well, they are sometimes but sometimes if my back isn't sore then they come out pretty good.

Then they're not too bad.

Have you had a lot of those? Yeah.

About how many bone marrow would you think you've had? Just as a guess.

About 30 maybe.

About 30? Wow.

That is a lot.

Yeah.

And how many spinal taps would you get? I've had more than, I've had about 50 of those.

About 50? I think so.

That's an awful lot.

You know.

Didn't you have some trouble with your hair too? Yeah.

What was that about? It just falls out because it needs the cells every day and the radiation kills some of the cells so it just falls out.

The hair falls out from the radiation? Yeah.

And what do you do about that? I wear a wig.

You wear a wig.

And under your wig you have no hair now? Right now it's coming back.

Oh, it is coming back.

That's good.

I bet you're glad.

Yeah.

Well, you're kind of upset about your hair falling out? Yeah.

Yeah.

Do other kids know about that? Yeah.

The kids at school know it but they don't mind it all.

They don't mind? Have you been teased about it? Well, some kids that, like, in other grades they ask me and my friends just say, oh, just forget it because they're real nice.

Your friends are real nice? Yeah, they understand.

Do any of your sisters ever tease you about that? No.

They don't tease you, huh? No.

Steve, I really think you're the most remarkable fellow I've really enjoyed talking to you.

Let's get back to the game.

Okay, your turn.

What we've just seen is a family that copes remarkably well.

I wonder how many of us in watching this and thinking about Steve have wondered about our own ability to cope and sometimes wondered about whether our problems are too petty to get upset to the extent that we do.

Thank you.