You will create most of this chapter for yourself by living your own life, a day at a time. Everyone who worked on this book hopes that your life will be fun and happy. We hope that you'll feel good most of the time. . . . Your life won't be like everyone else's, but then, no two lives are ever the same. Leukemia will change your life. Not only that, it will affect the way your family lives."
-- From "You and Leukemia, A Day At A Time" by Lynn S. Baker, M.D. Distributed by Children's Hospital to patients and their parents.
Jeffrey Scott is the star.
It is his fourth birthday party, and by 1:45 Saturday afternoon about 30 of his 3-to-5-year-old classmates are working hard at raising the noise level in the playroom of his family's Rockville rambler.
"Tara stuck her tongue out at me," a child in a blue sweater complains. "You hit me," responds Tara, with all the indignation a 3-year-old can muster.
"I'm the Incredible Hulk," pronounces the birthday boy -- a claim supported by his Underoos.
It is your everyday, Saturday afternoon birthday party, balloons and crepe-paper bunting hanging from the cork-tiled ceiling, lots of presents, lots of kids, a magician . . . It is and it isn't.
"Jeffrey got sick in the summer," Jean Scott recalled recently. "That was in itself really queer. He was (at 18 months) one of those big healthy brutes that you don't worry about getting sick. So I took him to the pediatrician, who said 'It's a virus. It's been going around, and he'll get over it in a couple of days.'
"Well, he didn't get over it in a couple of days."
Jean Scott is a strong person. "Magnificent" is a word often repeated when people describe her. But you can sense the strain as she talks about those early days.
"It's really strange, because I think I was really prepared for something really serious. I had no idea it would be of the gravity that it was, but I said to myself. 'You know, a kid just doesn't get a virus and react this way.'
"It took us about a month of messing around with what had all the signs of a virus before we'd really gone anywhere. Steve's family was here from Phoenix, and the whole time Jeffy would cry and then he'd seem fine and then he'd spike a fever and then it would go away.
"Now my mother is one of these neat little mothers with a lot of insight, and when she doesn't get her weekly letter she knows something's really wrong. So she called me and she said, "Okay, what's up?' and I said 'There's something wrong with Jeffrey,' and she said, 'Okay, what are you going to do about it?'
". . . We walked into the hematologist's office and it's amazing, it's so vivid, even now, 2 1/2 years later, I can remember the placement of furniture, I can remember everything, because even though I was prepared, it hit me so badly that, you know, I'll die with that memory.'"
The children are seated on the floor around two large paper tablecloths of the "Super Friends" persuasion. Napkins also are adorned with that unbeatable combination of "Men" -- Super, Bat and Spider, with Wonder as the token woman.
"Hands in laps 'til everybody's served," says Jean Scott sternly.
"Jeannie", asks one very small boy with a very large sob in his voice, "when is my mommy coming for me?"
"Soon," promises Jean Scott.
Soon, anyway, the sob is smothered in vanilla ice cream and chocolate chip cookies.
"I need help," says Tara, pulling on a reporter's sleeve. ("Help" to disengage a plastic spoon from still too hard ice cream.)
Jeffrey, whose real birthday is tomorrow, takes a bite of cookie, then tucks the rest of it behind a lamp. "For Jingles," he explains. Jingles is the family dog, now locked in a neighbor's back yard and yelping in misery -- a bizarre, but affectionate cross between a German shepherd and a basset hound.
No one, of course, can hear him over the buzz of the birthday. But no one can hear 5-year-old Lindsay either, as she tries to get "Happy Birthday" started, in a husky, ever so little voice.
"It starts off as quite a shock," said Steve Scott, Jeffrey's father. Scott, 35, is a technical writer for the Nuclear Regulatory Commission. He and Jean met at Case Western University in Ohio when she was a student and he was an instructor, working on a graduate degree.
"You get frightened at first. And then you get angry. Sort of a 'why me?' situation.
"But the nurses and doctors at Children's Hospital were . . . are a remarkable group of people. . . . I can't see how they do it . . . to see them dealing with it and knowing they're human, too, is a source of strength.
"I guess everybody reacts differently, I guess I just dug deeper into my work . . ."
Jeffrey Scott is one of about 3,000 children diagnosed each year as having leukemia. It isn't a large number, but as Steve Scott puts it, "The scientific community is used to talking in probabilities and estimates like 'one out of 200 million,' and that doesn't seem big. But when you're that one, it does seem big." And though the causes continue to elude researchers, great strides have been made in the treatment of an illness that only a decade or so ago was an irrevocable sentence of death.
Dr. Sanford L. Leikin, chief of Children's Hospital's hematology-oncology department, talks about "the dramatic change in the outcome of children's cancers in the last 10 to 15 years."
"With the kinds of treatment programs we have now, we can control the disease -- I should use the word remissions -- in about 95 percent of the children. Of that 95 percent, about half will have very long-term survivals. "We're talking about at least five to 10 years and, we think, even longer . . . so what was essentially an acute short-term disease has become a long-term disease . . .
"But," said Dr. Leikin, his gentle eyes perpetually sad, "This progress has not come without its cost, because long-term diseases require medical surveillance. We have here a number of traumatic, unpleasant procedures, so you're put into the position of having to support these individuals in both the medical and psychosocial situation, even, indeed, for many years . . . so the family doesn't feel completely free of it and they have this sword of Damocles . . ."
Standing in line to play Stick the Cookie into the Cookie Monster's Mouth, here's what happened:
Howard, 5, socked Carrie.
Andrew hit Howard.
Jeff grabbed Howard.
Howard gave up.
Said Andrew to no one in particular, "Jeffrey never cries."
"We're very strict with Jeffrey," Jean Scott said. "Where he goes out to play, I've told them Jeffrey must behave or kick his bottom right out the door. He has to obey your rules in your house. But I've had parents say, 'Well, we always think of Jeffrey as being sick and we can't do that.'
"Well, why lay the guilt trip on me like that? So I say, "If you're not going to treat Jeffrey like a normal kid, I don't want him in your house.' Jeffrey can't be special to himself and he can't be special to his friends, because then nobody will have a good time.
"I think that parents of kids with leukemia or any other serious childhood disease live by the trite old saying, 'live for Today.' 'Don't put off until tommorrow. . . .'
"We save for Jeffrey's college education, but never a day goes by where, if Jeffrey want to go to the park, and it's a good day, no matter how we feel, we say there's no excuse for not going to the park and we do it. You make the extra trip to the zoo.
"Our schedule is so busy: Monday is the library, no matter what. Wednesday is swimming lessons for both children. (Daughter Jennie is 7 months.) Tuesday, if Jeff has no appointment at the clinic, he gets to stay at school and have somebody over to play and stay for dinner. Friday is just sort of fall into a chair in exhaustion.
"I think the big difference is we try to do so much more, because you never know . . . I want him to see the museum. Or go on a train ride. Or go on a helicopter . . .
"Then there is a problem that I think a lot of parents face and that is the fine line between giving your child extra experiences and spoiling them. . . . So in return for extra toys and extra trips we expect an awful lot from Jeffrey insofar as his behavior goes. He has chores. He is not allowed to be nasty to any of the nurses or doctors. He is allowed, during any uncomfortable treatment to cry or say 'ouch' during the treatment itself, but when the treatment is done, that's it. He has to cheer up, because they've got a tough job, too.
"So that I think with all the exposure he's gotten, we had to tread that fine line where he's not a brat, because nobody likes a spoiled brat whether they're sick or well."
Jean Scott must also deal with the reactions of other people. It was hard to find a school willing to accept Jeffrey, she said. Some people shy away as though he had something contagious.
She was, she said, distressed by the reaction to the death of 3-year-old Chad Green, whose parents had taken him off chemotherapy and were using the controversial drug laetrile.
"Everyone expected me to say how awful the parents were. But I couldn't do that. If they decided chemotherapy wasn't for their child, I honestly feel they really believed in what they were doing. And laetrile seemed so promising.
"Chemotherapy treatments do bother kids. It give them mouth sores, sore joints, headaches, hair loss and on and on. So I have to tell people Chad Green could have died on chemotherapy too. It was their choice, and it was a viable choice."
Show me your Underoos.
They'll do it at the drop of a hat -- or rather, a lift of a sweater:
Eric, 4 had Spiderman Underoos.
Amir, 4, had Superman Underoos.
Jeffrey's was The Incredible Hulk.
And Rebecca, 5, demurely showed off her Wonder Woman Underoos.
One of Jeff's presents was Shazam Underoos.
Another was Star Trek Fundy Undies, a similar two-piece shirt-brief set.
Sighed Jean Scott, "They decide what they want to be when they wake up in the morning, and God help you if you've washed the wrong ones. . . ."
Children's Hospital has two hematology social workers who "interact with the families, get some sort of feel for what families are going to need very intensive help, what ones will sort of do with crisis intervention," Dr. Leikin said. "Actually our whole staff -- five physicians, nurses, secretaries, aides, receptionists, technicians, everybody -- is utilized for support.
"With each sort of cadre, group of new patients," said Leikin, "we bring them into group therapy sessions . . . so they can see that other people are in the same boat, have the same difficulties."
Said Anne Dente, one of the social workers, "This [the illness of the child] disconnects them from so much of the life they've known, and they can feel so isolated . . ."
The support group, says Jean Scott, "was vital to us the first six months to a year."
"And now when it fits into our schedule, we return as what they call 'old parents,' to show the new parents who are sitting there drowning in tears that we can smile, we can laugh. You're going to get over the hurt that you think you'll never get over.
[TEXT OMITTED FROM SOURCE] tial shock, you focus on other things, so we keep in very close contact with a lot of the parents whose children are diagnosed at the age of our kids. I don't think that a week goes by that we don't check up on each other . . . I know when I go back to parents' meetings and see the sobbing and the crying and the hurt, I had forgotten how it was . . . but there are other things to deal with. No matter how well your child is doing, as soon as you hear that some child has had a relapse, you're waiting for your clock to run out . . ."
Biff, the magician, is "magicking."
Over a brass globe on a stand, he drapes a large silk scarf.
"Do you really think he's going to make that globe disappear?" Steve Scott asks the youngsters.
"Yes he will," shouts one.
"No he won't," shouts another.
A third child raises his hand. "Excuse me," he offers, "but it's magic."
Jean Scott, as she talks, finds many things she can hang onto as having been "lucky."
"Lucky" that Jeffrey wasn't taken in a sudden accident. "Lucky" that the school, the Franklin Montessori School, and the neighbors are cooperative about alerting the family to illness, especially chicken pox, which can be fatal to a leukemia patient. "Lucky" that his acute lymphoblastic leukemia remains in remission.
And, she said, "we are lucky in that since Jeffrey was diagnosed at an early age, he's never questioned treatment.
"We keep retelling Jeffrey because we knew that at 18 months he knew nothing. At 2 years he could understand that he had to keep going back to the doctor more than most of his friends. At 2 1/2 he realized that none of his friends had what he had, but even now, at almost 4, it's no more than a nuisance.
"I think the real problem comes with parents whose children are 8 and above . . . children who realize what serious illness can mean . . . and that the child might die . . . and there may be a time . . ." She pauses and starts again. "I expect there will be a time when we'll have to deal with that.
"It's a lot harder when you explain to a child that they may die, then have to turn around and say, 'Okay, I still expect great behavior from you. You still have to do your homework. You still have to do your chores.' How do you handle an obnoxious child who says, 'Don't you dare spank me because I'm going to die.'"
What did Jeffrey like most about his birthday?
"Eating," he says with no hesitation at all.
Here are some of his presents:
Four Corgis, including a Spiderman copter.
A fireman's helmet that's supposed to flash, but evidently needs new batteries.
A Matchbox carrying case.
A Candyland game.
Fisher Price trucks.
Books, puzzles and, of course, the Underoos.
Jeffrey will have his birthday cake tomorrow on his real birthday. It will be a Superman cake. "Last year," said his mother, "it was the Cookie Monster, and it took two hours just to put on the icing and I swore, never again, but now here's Superman . . ."
All of the children have gone now, and it is quiet in the Scott household. Jingles is freed from captivity next door and sister Jennie, who had slept miraculously through it all, is awake and gurgling.
Jeffrey had invited the whole school. "That's two classes," Jean Scott had said earlier, a little apologetically. "He's friends with most of them. I couldn't say no because I said to myself, 'He may not get to the teenage party where he can have a dance. He may not get to do a lot of things.'"