SIDE STREETS
ANGEL OF THE MORNING
A death gives birth to compassion Mother who lost boy to cancer gives other parents strength
By Brian C. Jones
Providence Journal
Nov. 11 1990
MEMO: First of two parts.
DESPITE THE PLACE where you find her, Lee Green is cheery, even effervescent.
She is a slender, small woman, with ringlets of black hair, one of those people who look young even though it's perfectly possible they are not.
Green avoids long, ponderous speeches. She uses no big, technical words, unless pressed. She makes it all sound so ordinary, you'd think you were talking to the phone company.
Actually, until a little more than a year ago, you would have been. For 20 years, Green was a New England Telephone customer representative. Hello, thank you for calling The Company Everyone Hates, how infuriated are we today?
It helped her meet one requirement of her current job: skill in dealing with people under stress.
The other requirement, though, is so grounded in tragedy and sorrow that nobody could possibly prepare for it. And, of course, no one willingly would.
To get Lee Green's job, you must have a child who has had cancer.
Or, if not cancer, some other life-threatening illness. The "parent consultant" specifications acknowledge that, as a result of the illness, your child may have died.
Green's son, Jason, got leukemia in 1981, when he was almost 3, and he died two years later.
So she qualified.
Qualified to go back to Rhode Island Hospital, to be with the ordinary men and women who struggle, just as she did, to go on living while their teenagers, their preschoolers, their babies face death.
How could she? How could anyone?
* * *
Lee Green starts her morning with the same routine, delivering hot coffee to parents who have stayed the night with their children in the Potter Building, the crowded, cluttered children's section of Rhode Island Hospital.
The parents stay by their children's bedside all night. Oh, maybe they'll leave for an instant to go to the bathroom, but not for something as trivial as coffee.
They are too scared.
You just never know when someone might come by for a "finger stick."
Medicine's brutal cancer arsenal includes drugs that make children vomit, make them fat, make them bald, so a tiny jab to get a minuscule blood sample might not seem like much.
But not if you are a parent, a parent who has done something so selfish and uncaring as to wander off for a cup of coffee and then return to find your child - who might die - screaming, shrieking not really from the pain but because you weren't even there.
So Green brings coffee around every morning.
She moves from room to room and bed to bed, quickly, so the coffee won't get cold, and she takes time to chat only when she has reached the last parent, then works her way back to spend time, to talk with the others.
The talk sometimes is about the weather.
Sometimes it's about how terrible the night has been.
* * *
The sure sign of cancer, Lee Green says, is the look on your doctor's face.
Jason had been out of sorts for two weeks, running a temperature and sounding whiny, which he almost never was.
On the phone, her doctor said it sounded like the flu. When she took Jason to see the doctor the following week, he said the same thing.
Three days later, Jason was running toward her in a shopping mall, and he fell. His legs just gave out. And though he hadn't gotten any worse by midnight, Green dressed him and drove from their home in West Warwick to Kent County Memorial Hospital, in Warwick.
Probably just the flu.
For no particular reason, Green mentioned to a nurse that Jason hadn't been given a blood test. Don't blood tests tell a lot, she asked. The nurse gave her that We'll-Humor-Her look and arranged it.
When the nurse returned, a doctor was with her.
"They both had that real scared look," Green says.
They asked whether Green could take Jason to Rhode Island Hospital, minutes away in Providence, and meet her pediatrician there. Sure. Now Green had a question for the doctor: Is it serious?
Yes.
"See," she said, almost triumphantly, "I knew something was wrong."
Lee Green was terrified.
At the Potter Building, she asked her pediatrician the same question: Is it serious?
Yes.
Out of the blue she asked: Is it leukemia?
The doctor's face changed.
It appeared to be, he said. More tests had to be run.
Jason had been placed in another room, and the only thing that mattered was that Lee wanted to be with her son. She found him in a crib. An intravenous tube already had been inserted in his arm.
* * *
There is time, Lee Green explains to parents who have sick children. And there is hospital time.
Hospitals don't mean to be slow, she says. It's just that they are complicated places.
It was six hours later, daylight, midmorning, when the doctors were ready to tell Green and her husband, Arthur, what was happening to Jason.
They were taken into a sparsely appointed room with a couple of couches, where there were five doctors, all strangers, all with that look on their faces. She now knows this gathering has a name: "the informing interview."
The crowd was making her feel small.
The tests are in, they said. Your son has leukemia, but it's lymphoblastic leukemia - the "good" kind.
Great, it's the good kind.
That meant a 50-50 chance of recovery. (Today, the odds for all cancers have improved to better than 65 percent.)
The doctors outlined the drugs that would be used, the time that would be spent in the hospital, the outpatient treatment that would follow. Try to keep your life as normal as possible, the doctors said.
Interesting idea, Green thought. Her world had just fallen apart.
In the first weeks, all a parent sees are big red letters, spelling two words: Cancer. Death.
You do not hear the other things the doctors are saying.
Your children are supposed to survive you.
Jason wasn't even 3.
Cancer.
Death.
There were papers to sign, permission to use what she calls "the horrible drugs with the horrible side effects." These effects can include nausea, baldness, sterility.
Sterility?
Jason, so good looking, with no children of his own?
Her husband posed the alternative:
"He's going to die without it."
* * *
Cancer was on a rampage in Jason Green's body.
The treatments were begun within 24 hours, and he stayed in the hospital for 10 days, with the drugs feeding into his body, killing bad cells, making him throw up.
Lee and Arthur took turns spending the night.
Jason returned home to a welcome of balloons and handmade signs Lee's mother had arranged while she was baby-sitting Jason's sister, Michelle, then 5. He was 5 pounds lighter than when he had left.
The doctors said that Jason would gain the weight back. And then some.
* * *
Lee Green is in a store, buying perfume.
Jason, whose weight has gone from 25 to 45 pounds, a side effect of certain cancer drugs, has a hard time walking, so Green is holding him. She looks at the clerk, and she knows what's coming.
Please don't, Green thinks.
But she's going to do it.
"You're a big boy now," the clerk says to Jason. "Why have your mother carry you?"
"It's none of your business," Green snaps at the clerk, "but it's just that he's got leukemia. He would love to be able to walk. Give me the perfume. And have a nice day.
"The woman's face, I thought, was going to hit the floor."
* * *
Green is in a supermarket. Jason is with her, looking tired, heavy.
A neighbor, a friend, is shopping, too - with her daughter, Jason's age, healthy.
The woman starts around the corner, heading up the aisle toward them. For an instant, the two women's eyes meet.
Then the mother and her daughter are gone, disappeared into another aisle.
Maybe the other people feel guilty or inadequate. Maybe they think that it could happen to them.
"You get very alone," Green says.
In any case, Green has changed since then. She's not angry anymore; she knows it's tough on everyone.
Imagine. Turning up a supermarket aisle and finding yourself face to face with cancer, death.
* * *
There were bad days and good days.
Once a week, Jason would be taken to the clinic at the hospital, where he received his drugs.
On good days, Jason would be on the swings, playing basketball. Bad days, he couldn't get off the couch.
But the treatments were working. And by the end of the first year, Jason was doing the best he had since the leukemia was discovered. His color was good.
Green was standing in the kitchen. Jason was out playing in the yard, swinging on the swings, running. The phone rang. It was the doctor, reporting back on the latest tests.
"Blasts," the doctor said.
Cancer cells were visible again in his bone marrow.
It was worse than the first time, because now she knew too much. Knew they were back to square one. Only worse. The first, most-hopeful line of treatments hadn't worked.
Now the odds were against Jason.
She hung up the phone and said to herself it wasn't happening.
Jason had done everything he could, taken his medicine, done everything he'd been asked.
"I cried that day, I'll tell you."
* * *
The second year had some wonderful moments.
A program called A Wish Come True, which grants favors to critically ill children, was just getting started, and the Greens were the second family in Rhode Island to get a trip to DisneyWorld.
The plane, the car, the hotel, the whole bit, all paid for, for the whole family.
"You get down there, not thinking about leukemia. No finger sticks, blood tests. You are like regular people, you are busy 12 hours a day."
To this day, one of the high points of her job is seeing people returning from similar trips, so relaxed, so happy.
Doctors were trying a variety of drugs, searching for something that would work.
But it was obvious, as days turned to months, that it wasn't working.
* * *
Jason was peppering Green with questions about his fifth birthday party, looking forward to it as he had to no birthday before.
Because Lee and Arthur doubted their son would make it to July 28, they decided Jason should turn 5 on April 30.
A kid doesn't know about calendars, dates, just birthdays.
Jason's uncle paid for a huge tent in the yard, in case it rained, which it didn't. In fact, temperatures were in the 80s, as if it were July and God were in on the lie. There were ponies, a magician, a Smurf with balloons. The electric company even sent one of its trucks with a hydraulic bucket to lift children as high as the sky.
Twenty-five screaming kids and 50 adults, Jason's fifth birthday. A time to remember. A good time.
* * *
Jason had never talked about dying. In fact, Green often wondered what he was thinking.
"Three years old, and he trusts you. You're his mother. His hair is falling out; he feels sick.
"And they are all so trusting. They go back. They do whatever they have to, because you're their mother."
In early June, after he thought he had turned 5, Jason was climbing into bed with one of his favorite toys, a large, stuffed dog known to the family as Fluffy Dog.
Jason had a question:
"When I die, can I take Fluffy Dog?"
Of course, Green said.
* * *
As Jason's prognosis grew grimmer, the Greens discussed when enough would be enough, as far as cancer treatments were concerned. Lee felt Jason would let them know.
He did, on June 12.
Green had taken Jason to the hospital clinic for his regular shots, and his behavior was "absolutely horrendous." He said he didn't want to do that anymore.
"I looked at the doctor," Green says, "I said: This is it. We won't be back."
* * *
June 26, a month before Jason's fifth birthday.
Michelle was scheduled to go swimming.
As was the family custom, Jason said goodby to his sister and gave her a kiss.
Green carried him from his bedroom into the big family room, which is paneled and has a TV and was one of Jason's favorite places.
During his treatments, Jason would jokingly pretend that it was never the right time. He would say: "I'm not ready, I'm not ready." And that's what he said to his mother and father, lying on the couch, wrapped in a blanket:
"I'm not ready, I'm not ready."
"Jason, you're ready," Lee said.
"You can go anytime," Arthur said.
Children, Green had read, sometimes ask their parent's permission to die, and perhaps Jason did.
Within five minutes, Jason stopped breathing.
Lee looked at a friend, a nurse, who had joined them for the day.
The nurse nodded.
* * *
Lee and Arthur took Jason to the funeral home themselves.
"We didn't want some stranger taking him."
Michelle, returning from swimming, found cars parked outside, 20 people in the house, and she had absolutely no idea what was going on.
"Why is there a party?" she asked.
Green took her daughter into another room and told her.
Michelle wanted to see her brother.
Lee and Arthur had hoped to spare their daughter the horrors of death, but now Lee wonders whether they should have included Michelle more. Maybe kept her home that day, maybe taken her to the funeral home.
At the cemetery service the next day, the 8-year-old girl just didn't understand what the little white box was.
* * *
Lee Green was determined to deliver Jason's eulogy.
She had written it ahead of time for the memorial service, and given a copy to the priest at St. Andrew and St. Philip. He had told her that if she froze at the last minute, he could take over.
Lee got up from where the family was sitting in the front row, walked up to the lectern, turned around and looked out into a church filled with yellow flowers and 350 faces.
What she saw was Jason's "hot wheel" - his Dukes of Hazzard tricycle. She could see him, legs pumping away on the pedals, roaring across the church.
"Oh, this is easy. I can do this," she said to herself.
And she felt good.
This church is full of Jason's favorites: flowers, songs, friends and the color yellow, but more importantly, something that can't even be seen, and that's love. It's the one thing you get more of the more you give away. Jason seemed to know this better than anyone. . . .
* * *
In the house where her son had died, Lee Green walked in circles.
Except for her thoughts, she was alone. Her husband was at work. Her friends were at work.
"All my memories were here," she says. "I was spending money like crazy, constantly doing rooms over."
She had been told that first year would be difficult. And so that was Green's focus, to get through the first year. She did, too. She made it through the first year.
And on the first day of the second year, she "completely fell apart."
"I cried the full day; I didn't leave the house, didn't cook, didn't get dressed, didn't turn on the TV."
All that day, the events of the past three years ran through her mind, every visit to the hospital, every procedure, every event - like a long, sad movie.
Green just couldn't understand. It was time for her to get on with her life, but she couldn't.
* * *
SIDE STREETS
ANGEL OF THE MORNING
Life goes on, small things count Green helps others come to terms with their child's cancer
By Brian C. Jones
Providence Journal
MEMO: Second of two parts.
DURING THE FIRST year after her son, Jason, died following his fight with cancer, Lee Green's daughter, Michelle, became her reason to go on.
To get up.
To get dressed.
Do the dishes.
To go through the everyday routine. And to celebrate birthdays and holidays, "all of which are horrible."
But on the first day of Year Two, Green collapsed in tears and despair. Despair, because there seemed no clear road map to follow to the rest of her life.
Slowly, she began to learn more about herself and what had happened, and something about the nature of time.
She started seeing a psychologist.
"He just made me see that in a year's time it isn't always going to be better. He made me see that when you lose a child there's no time frame you can put it in."
Green had gone back to her job as a phone company customer representative. The benefits were decent, and it was a job she could do by rote.
But Mondays were predictable, all those cranky calls stored up from the weekend, just waiting for her.
When the company offered her a choice - layoff from her part-time job, which was close to home, or full-time hours, farther away - Green decided it was time for a vacation.
You think she would have fretted away that whole summer, wondering if and where she would land her next job.
But when you lose a child, the worst thing that could ever happen already has.
In September, she turned up at a job fair at the Providence Civic Center. Stopping by a real estate booth, she and the interviewer recognized each other instantly. People in the cancer program never forget.
The real estate person's daughter was being treated when Jason had been there. The girl had survived. What are you doing here, the interviewer said. You should be at the hospital. They're hiring a parent consultant.
Green went right over.
* * *
How could anyone go back to a place you had taken your son or daughter to get shots, to have small amounts of marrow extracted, to have blood samples taken?
As kind as people are, and as careful as medicine tries to be, your child can be hurt or frightened.
And you hold him as he is screaming, and you know the side effects that will come, and you know it is right and awful at the same time.
Back home, the child scampers right out to the yard as if nothing has happened, goes right for the swings. But you're still back at the hospital, hearing screams and full of doubt.
The rest of the family doesn't seem to understand.
But the nurses and the doctors and the others back at the hospital do know; in a sense, they become like family.
Green had been back, to say hello. She had been back twice.
* * *
Dr. Edwin N. Forman, who, along with his colleagues at Rhode Island Hospital's pediatric oncology unit, invented the parent consultant idea 15 years ago.
Forman has a happier prospect than someone, let's say, who chose to go into banking, selling cars or New England real estate. In Forman's line of work, the future keeps getting better and better.
Thirty years ago, when he started, the chances of a child surviving cancer were nonexistent, 1 in 50 or worse, and a medical school professor told him a doctor's job was to make sure parents understood there was no hope.
Now, 2 out of 3 cancer cases are cured.
Establishing parent consultants posed some risks for doctors and others in the highly charged, competitive world of medicine. It meant bringing a nonprofessional into the inner circle, and only 13 hospitals have done so.
But Forman and the others decided they had to do more than kill cancer cells. Disease takes a toll on families. As a result, Rhode Island Hospital now has two parent consultants.
Still, even the doctors wonder, sometimes, how families get through it.
"It's inconceivable that someone could hear that their child might die and then continue to function," Forman says.
"Sometimes a doctor will say, in desperation, 'Do they ever laugh again; do they ever have a good time again?' "
* * *
"When I think about Jason," Green says, "there were so many happy times we shared together; some people never had that."
The good-natured soccer player.
The star of the Nerf basketball game that Lee and Arthur, her husband, had set up in the hallway of their West Warwick ranch house.
Jason running in the yard, swinging, and running and running and running.
"You don't take anything for granted," Lee Green says. "If the circus is here, you go."
A life is no less valuable because it's short.
* * *
You're the one whose child died, Linda Ancona said when she first met Lee Green.
It took Green's breath away.
Not the bluntness of it. Just that it was going to be harder for Green to do what she does.
Green would rather Jason's death not be the first thing that parents new to the cancer program find out about her. It's just one more reason to give up hope, and Green believes there's always hope.
Linda Ancona and her husband, Cliff, had just been through the kind of "informing interview" in which Green, years earlier, had learned the details of Jason's leukemia.
Like Jason, Fred, the Anconas' 10-month-old son, had leukemia. Linda and Cliff were convinced he would not live another day. Thirty percent/ninety percent, the doctors had said when Cliff had pressed for specifics.
They meant 90 percent of children of Fred's age and medical condition would see their leukemias go into remission for months or even years. But long-term, only 30 percent would survive.
It had been a day of terrible news and unwelcome new faces. Green's was one more face, and Linda Ancona just didn't want to bother.
Green pressed on, anyway. If you look at Jason's history, he had lived for two more years, and they had been good years.
Also, look what had happened in intervening years: The odds of recovery for the kind of leukemia that Jason had have risen from 50 percent to 65 percent.
A month from now, once you get your child away from the hospital, see the treatments beginning to take effect, you'll begin to feel more hope.
You'll be sitting home; he'll be doing what he's supposed to be doing, throwing a baseball, walking.
The Anconas looked tired and worn.
Green, looking at little Fred, could see why.
"There were deep, deep circles under his eyes, and he was a gray color. He was whiny and crying and clingy," she says. "It's hard to believe how sick he was."
"If you have any questions, that's what I'm here for," Green tells them, "to make a difficult situation a little bit easier."
* * *
If for Lee Green the first sign of her son Jason's leukemia was the frightened look on the doctors' faces, for Linda Ancona it was how nice everybody was being to her.
"Everyone kept coming in and giving me coffee," she says.
The doctor had felt the 10-month-old's spleen and liver, and then ordered blood tests. People were being too nice.
Leukemia, the doctor said.
"You just go numb," Linda Ancona says. "You think it's a joke. You think he's got the wrong blood test, the wrong kid."
For two months, while Fred fought cancer and infections, Linda camped out on a cot next to his hospital bed. Her husband returned to work. Sometimes she wouldn't leave the hospital for two weeks at a time.
Green was spending a lot of time with a family in the next room, and she made a point of coming to see the Anconas. They warmed to her.
"I looked forward to her," Linda Ancona says. "There are so many questions. You need to talk and cry. You could sit and talk and cry."
The Anconas wondered whether Fred would make it through another day. Cliff even inquired about a burial plot.
Green knew that it was just not that grim.
One way for them to realize that was to visit the twice-a-week clinics for children who were getting treatment after they had been released from the hospital.
Linda used every trick and excuse she could think of to avoid that tour. Her mother was visiting. Or wasn't. Either way, she couldn't leave Fred.
"I didn't want to see - what? A little bunch of cancers."
Somehow, after a month, Green led her down the twisting corridors from the Potter Building into the clinic area.
Linda Ancona was stunned.
Instead of what she had feared, she saw robust, laughing, active children. Searching for a description, she finally says: "They are like this," and she is pointing at Fred.
As time passed, Linda began to believe what Green had been talking about. She saw it before her very eyes.
She looked at Fred and saw what she had seen since he was born: a "strong, healthy" boy who fought off two infections, in addition to the cancer, when he was in the hospital.
There is not a day that goes by, Linda says, that she doesn't think of the worst that could happen. She differs from Cliff, she says, in that her husband is able to concentrate on what is before him now.
"It hurts," she says. "It hurts everything. It hurts your marriage and your family."
How do parents do it?
"You just do," Linda says. "You have to."
* * *
To her refrigerator door, Lee Green has fastened this fragment from Robert Frost, so she can see it every day: "In three words, I can sum up everything I have learned about life: It goes on."
But even more than the future, she believes in the present.
And that small things count.
Being available by phone at night. A sandwich for a mother who can't remember to eat. Every couple of months, persuading parents to get away to a restaurant, to relax and talk among themselves.
She remembers the night before one girl died, she asked her parents whether there was anything else she could do. The mother said she had a "splitting" headache.
"I went and got some ice water and aspirin," Green says. "Doesn't that sound ridiculous?"
The next day, when the girl died, Green cried with the parents.
But not as she cried when she got off by herself.
Green goes back to her office at times like that, and just sits there and cries for as long as it takes.
* * *
Linda had made pickles, and she invited Lee to her home to sample them.
Out of the blue, Linda popped the question.
"What do you think the odds are?"
"Linda," Green remembers saying to her, "you've got him today. You have to enjoy him today. He looks wonderful."
* * *
At 16 months, Fred walks around his house like King Kong at home in his personal jungle.
He has a round, expressive face. He laughs but then looks very worried at a visitor wearing a sport coat and a tie. Too much like a doctor, his mother explains.
It is a warm fall day. The sky is the kind of blue you find on color charts in paint stores, and the air is soft and sweet. Leaves are just beginning to turn on the Anconas' neat, suburban street in Warwick.
Linda shows a visitor to the side door, and Fred comes along, with his King Kong walk, and he sees a pumpkin on the front step.
"Pum'kin, pum'kin," Fred squeals, and he is running to the brick steps. He turns and sits next to his pumpkin, back resting against the front door, Huckleberry Finn on a fall day, waiting for Halloween.
ANGEL OF THE MORNING
A death gives birth to compassion Mother who lost boy to cancer gives other parents strength
By Brian C. Jones
Providence Journal
Nov. 11 1990
MEMO: First of two parts.
DESPITE THE PLACE where you find her, Lee Green is cheery, even effervescent.
She is a slender, small woman, with ringlets of black hair, one of those people who look young even though it's perfectly possible they are not.
Green avoids long, ponderous speeches. She uses no big, technical words, unless pressed. She makes it all sound so ordinary, you'd think you were talking to the phone company.
Actually, until a little more than a year ago, you would have been. For 20 years, Green was a New England Telephone customer representative. Hello, thank you for calling The Company Everyone Hates, how infuriated are we today?
It helped her meet one requirement of her current job: skill in dealing with people under stress.
The other requirement, though, is so grounded in tragedy and sorrow that nobody could possibly prepare for it. And, of course, no one willingly would.
To get Lee Green's job, you must have a child who has had cancer.
Or, if not cancer, some other life-threatening illness. The "parent consultant" specifications acknowledge that, as a result of the illness, your child may have died.
Green's son, Jason, got leukemia in 1981, when he was almost 3, and he died two years later.
So she qualified.
Qualified to go back to Rhode Island Hospital, to be with the ordinary men and women who struggle, just as she did, to go on living while their teenagers, their preschoolers, their babies face death.
How could she? How could anyone?
* * *
Lee Green starts her morning with the same routine, delivering hot coffee to parents who have stayed the night with their children in the Potter Building, the crowded, cluttered children's section of Rhode Island Hospital.
The parents stay by their children's bedside all night. Oh, maybe they'll leave for an instant to go to the bathroom, but not for something as trivial as coffee.
They are too scared.
You just never know when someone might come by for a "finger stick."
Medicine's brutal cancer arsenal includes drugs that make children vomit, make them fat, make them bald, so a tiny jab to get a minuscule blood sample might not seem like much.
But not if you are a parent, a parent who has done something so selfish and uncaring as to wander off for a cup of coffee and then return to find your child - who might die - screaming, shrieking not really from the pain but because you weren't even there.
So Green brings coffee around every morning.
She moves from room to room and bed to bed, quickly, so the coffee won't get cold, and she takes time to chat only when she has reached the last parent, then works her way back to spend time, to talk with the others.
The talk sometimes is about the weather.
Sometimes it's about how terrible the night has been.
* * *
The sure sign of cancer, Lee Green says, is the look on your doctor's face.
Jason had been out of sorts for two weeks, running a temperature and sounding whiny, which he almost never was.
On the phone, her doctor said it sounded like the flu. When she took Jason to see the doctor the following week, he said the same thing.
Three days later, Jason was running toward her in a shopping mall, and he fell. His legs just gave out. And though he hadn't gotten any worse by midnight, Green dressed him and drove from their home in West Warwick to Kent County Memorial Hospital, in Warwick.
Probably just the flu.
For no particular reason, Green mentioned to a nurse that Jason hadn't been given a blood test. Don't blood tests tell a lot, she asked. The nurse gave her that We'll-Humor-Her look and arranged it.
When the nurse returned, a doctor was with her.
"They both had that real scared look," Green says.
They asked whether Green could take Jason to Rhode Island Hospital, minutes away in Providence, and meet her pediatrician there. Sure. Now Green had a question for the doctor: Is it serious?
Yes.
"See," she said, almost triumphantly, "I knew something was wrong."
Lee Green was terrified.
At the Potter Building, she asked her pediatrician the same question: Is it serious?
Yes.
Out of the blue she asked: Is it leukemia?
The doctor's face changed.
It appeared to be, he said. More tests had to be run.
Jason had been placed in another room, and the only thing that mattered was that Lee wanted to be with her son. She found him in a crib. An intravenous tube already had been inserted in his arm.
* * *
There is time, Lee Green explains to parents who have sick children. And there is hospital time.
Hospitals don't mean to be slow, she says. It's just that they are complicated places.
It was six hours later, daylight, midmorning, when the doctors were ready to tell Green and her husband, Arthur, what was happening to Jason.
They were taken into a sparsely appointed room with a couple of couches, where there were five doctors, all strangers, all with that look on their faces. She now knows this gathering has a name: "the informing interview."
The crowd was making her feel small.
The tests are in, they said. Your son has leukemia, but it's lymphoblastic leukemia - the "good" kind.
Great, it's the good kind.
That meant a 50-50 chance of recovery. (Today, the odds for all cancers have improved to better than 65 percent.)
The doctors outlined the drugs that would be used, the time that would be spent in the hospital, the outpatient treatment that would follow. Try to keep your life as normal as possible, the doctors said.
Interesting idea, Green thought. Her world had just fallen apart.
In the first weeks, all a parent sees are big red letters, spelling two words: Cancer. Death.
You do not hear the other things the doctors are saying.
Your children are supposed to survive you.
Jason wasn't even 3.
Cancer.
Death.
There were papers to sign, permission to use what she calls "the horrible drugs with the horrible side effects." These effects can include nausea, baldness, sterility.
Sterility?
Jason, so good looking, with no children of his own?
Her husband posed the alternative:
"He's going to die without it."
* * *
Cancer was on a rampage in Jason Green's body.
The treatments were begun within 24 hours, and he stayed in the hospital for 10 days, with the drugs feeding into his body, killing bad cells, making him throw up.
Lee and Arthur took turns spending the night.
Jason returned home to a welcome of balloons and handmade signs Lee's mother had arranged while she was baby-sitting Jason's sister, Michelle, then 5. He was 5 pounds lighter than when he had left.
The doctors said that Jason would gain the weight back. And then some.
* * *
Lee Green is in a store, buying perfume.
Jason, whose weight has gone from 25 to 45 pounds, a side effect of certain cancer drugs, has a hard time walking, so Green is holding him. She looks at the clerk, and she knows what's coming.
Please don't, Green thinks.
But she's going to do it.
"You're a big boy now," the clerk says to Jason. "Why have your mother carry you?"
"It's none of your business," Green snaps at the clerk, "but it's just that he's got leukemia. He would love to be able to walk. Give me the perfume. And have a nice day.
"The woman's face, I thought, was going to hit the floor."
* * *
Green is in a supermarket. Jason is with her, looking tired, heavy.
A neighbor, a friend, is shopping, too - with her daughter, Jason's age, healthy.
The woman starts around the corner, heading up the aisle toward them. For an instant, the two women's eyes meet.
Then the mother and her daughter are gone, disappeared into another aisle.
Maybe the other people feel guilty or inadequate. Maybe they think that it could happen to them.
"You get very alone," Green says.
In any case, Green has changed since then. She's not angry anymore; she knows it's tough on everyone.
Imagine. Turning up a supermarket aisle and finding yourself face to face with cancer, death.
* * *
There were bad days and good days.
Once a week, Jason would be taken to the clinic at the hospital, where he received his drugs.
On good days, Jason would be on the swings, playing basketball. Bad days, he couldn't get off the couch.
But the treatments were working. And by the end of the first year, Jason was doing the best he had since the leukemia was discovered. His color was good.
Green was standing in the kitchen. Jason was out playing in the yard, swinging on the swings, running. The phone rang. It was the doctor, reporting back on the latest tests.
"Blasts," the doctor said.
Cancer cells were visible again in his bone marrow.
It was worse than the first time, because now she knew too much. Knew they were back to square one. Only worse. The first, most-hopeful line of treatments hadn't worked.
Now the odds were against Jason.
She hung up the phone and said to herself it wasn't happening.
Jason had done everything he could, taken his medicine, done everything he'd been asked.
"I cried that day, I'll tell you."
* * *
The second year had some wonderful moments.
A program called A Wish Come True, which grants favors to critically ill children, was just getting started, and the Greens were the second family in Rhode Island to get a trip to DisneyWorld.
The plane, the car, the hotel, the whole bit, all paid for, for the whole family.
"You get down there, not thinking about leukemia. No finger sticks, blood tests. You are like regular people, you are busy 12 hours a day."
To this day, one of the high points of her job is seeing people returning from similar trips, so relaxed, so happy.
Doctors were trying a variety of drugs, searching for something that would work.
But it was obvious, as days turned to months, that it wasn't working.
* * *
Jason was peppering Green with questions about his fifth birthday party, looking forward to it as he had to no birthday before.
Because Lee and Arthur doubted their son would make it to July 28, they decided Jason should turn 5 on April 30.
A kid doesn't know about calendars, dates, just birthdays.
Jason's uncle paid for a huge tent in the yard, in case it rained, which it didn't. In fact, temperatures were in the 80s, as if it were July and God were in on the lie. There were ponies, a magician, a Smurf with balloons. The electric company even sent one of its trucks with a hydraulic bucket to lift children as high as the sky.
Twenty-five screaming kids and 50 adults, Jason's fifth birthday. A time to remember. A good time.
* * *
Jason had never talked about dying. In fact, Green often wondered what he was thinking.
"Three years old, and he trusts you. You're his mother. His hair is falling out; he feels sick.
"And they are all so trusting. They go back. They do whatever they have to, because you're their mother."
In early June, after he thought he had turned 5, Jason was climbing into bed with one of his favorite toys, a large, stuffed dog known to the family as Fluffy Dog.
Jason had a question:
"When I die, can I take Fluffy Dog?"
Of course, Green said.
* * *
As Jason's prognosis grew grimmer, the Greens discussed when enough would be enough, as far as cancer treatments were concerned. Lee felt Jason would let them know.
He did, on June 12.
Green had taken Jason to the hospital clinic for his regular shots, and his behavior was "absolutely horrendous." He said he didn't want to do that anymore.
"I looked at the doctor," Green says, "I said: This is it. We won't be back."
* * *
June 26, a month before Jason's fifth birthday.
Michelle was scheduled to go swimming.
As was the family custom, Jason said goodby to his sister and gave her a kiss.
Green carried him from his bedroom into the big family room, which is paneled and has a TV and was one of Jason's favorite places.
During his treatments, Jason would jokingly pretend that it was never the right time. He would say: "I'm not ready, I'm not ready." And that's what he said to his mother and father, lying on the couch, wrapped in a blanket:
"I'm not ready, I'm not ready."
"Jason, you're ready," Lee said.
"You can go anytime," Arthur said.
Children, Green had read, sometimes ask their parent's permission to die, and perhaps Jason did.
Within five minutes, Jason stopped breathing.
Lee looked at a friend, a nurse, who had joined them for the day.
The nurse nodded.
* * *
Lee and Arthur took Jason to the funeral home themselves.
"We didn't want some stranger taking him."
Michelle, returning from swimming, found cars parked outside, 20 people in the house, and she had absolutely no idea what was going on.
"Why is there a party?" she asked.
Green took her daughter into another room and told her.
Michelle wanted to see her brother.
Lee and Arthur had hoped to spare their daughter the horrors of death, but now Lee wonders whether they should have included Michelle more. Maybe kept her home that day, maybe taken her to the funeral home.
At the cemetery service the next day, the 8-year-old girl just didn't understand what the little white box was.
* * *
Lee Green was determined to deliver Jason's eulogy.
She had written it ahead of time for the memorial service, and given a copy to the priest at St. Andrew and St. Philip. He had told her that if she froze at the last minute, he could take over.
Lee got up from where the family was sitting in the front row, walked up to the lectern, turned around and looked out into a church filled with yellow flowers and 350 faces.
What she saw was Jason's "hot wheel" - his Dukes of Hazzard tricycle. She could see him, legs pumping away on the pedals, roaring across the church.
"Oh, this is easy. I can do this," she said to herself.
And she felt good.
This church is full of Jason's favorites: flowers, songs, friends and the color yellow, but more importantly, something that can't even be seen, and that's love. It's the one thing you get more of the more you give away. Jason seemed to know this better than anyone. . . .
* * *
In the house where her son had died, Lee Green walked in circles.
Except for her thoughts, she was alone. Her husband was at work. Her friends were at work.
"All my memories were here," she says. "I was spending money like crazy, constantly doing rooms over."
She had been told that first year would be difficult. And so that was Green's focus, to get through the first year. She did, too. She made it through the first year.
And on the first day of the second year, she "completely fell apart."
"I cried the full day; I didn't leave the house, didn't cook, didn't get dressed, didn't turn on the TV."
All that day, the events of the past three years ran through her mind, every visit to the hospital, every procedure, every event - like a long, sad movie.
Green just couldn't understand. It was time for her to get on with her life, but she couldn't.
* * *
SIDE STREETS
ANGEL OF THE MORNING
Life goes on, small things count Green helps others come to terms with their child's cancer
By Brian C. Jones
Providence Journal
MEMO: Second of two parts.
DURING THE FIRST year after her son, Jason, died following his fight with cancer, Lee Green's daughter, Michelle, became her reason to go on.
To get up.
To get dressed.
Do the dishes.
To go through the everyday routine. And to celebrate birthdays and holidays, "all of which are horrible."
But on the first day of Year Two, Green collapsed in tears and despair. Despair, because there seemed no clear road map to follow to the rest of her life.
Slowly, she began to learn more about herself and what had happened, and something about the nature of time.
She started seeing a psychologist.
"He just made me see that in a year's time it isn't always going to be better. He made me see that when you lose a child there's no time frame you can put it in."
Green had gone back to her job as a phone company customer representative. The benefits were decent, and it was a job she could do by rote.
But Mondays were predictable, all those cranky calls stored up from the weekend, just waiting for her.
When the company offered her a choice - layoff from her part-time job, which was close to home, or full-time hours, farther away - Green decided it was time for a vacation.
You think she would have fretted away that whole summer, wondering if and where she would land her next job.
But when you lose a child, the worst thing that could ever happen already has.
In September, she turned up at a job fair at the Providence Civic Center. Stopping by a real estate booth, she and the interviewer recognized each other instantly. People in the cancer program never forget.
The real estate person's daughter was being treated when Jason had been there. The girl had survived. What are you doing here, the interviewer said. You should be at the hospital. They're hiring a parent consultant.
Green went right over.
* * *
How could anyone go back to a place you had taken your son or daughter to get shots, to have small amounts of marrow extracted, to have blood samples taken?
As kind as people are, and as careful as medicine tries to be, your child can be hurt or frightened.
And you hold him as he is screaming, and you know the side effects that will come, and you know it is right and awful at the same time.
Back home, the child scampers right out to the yard as if nothing has happened, goes right for the swings. But you're still back at the hospital, hearing screams and full of doubt.
The rest of the family doesn't seem to understand.
But the nurses and the doctors and the others back at the hospital do know; in a sense, they become like family.
Green had been back, to say hello. She had been back twice.
* * *
Dr. Edwin N. Forman, who, along with his colleagues at Rhode Island Hospital's pediatric oncology unit, invented the parent consultant idea 15 years ago.
Forman has a happier prospect than someone, let's say, who chose to go into banking, selling cars or New England real estate. In Forman's line of work, the future keeps getting better and better.
Thirty years ago, when he started, the chances of a child surviving cancer were nonexistent, 1 in 50 or worse, and a medical school professor told him a doctor's job was to make sure parents understood there was no hope.
Now, 2 out of 3 cancer cases are cured.
Establishing parent consultants posed some risks for doctors and others in the highly charged, competitive world of medicine. It meant bringing a nonprofessional into the inner circle, and only 13 hospitals have done so.
But Forman and the others decided they had to do more than kill cancer cells. Disease takes a toll on families. As a result, Rhode Island Hospital now has two parent consultants.
Still, even the doctors wonder, sometimes, how families get through it.
"It's inconceivable that someone could hear that their child might die and then continue to function," Forman says.
"Sometimes a doctor will say, in desperation, 'Do they ever laugh again; do they ever have a good time again?' "
* * *
"When I think about Jason," Green says, "there were so many happy times we shared together; some people never had that."
The good-natured soccer player.
The star of the Nerf basketball game that Lee and Arthur, her husband, had set up in the hallway of their West Warwick ranch house.
Jason running in the yard, swinging, and running and running and running.
"You don't take anything for granted," Lee Green says. "If the circus is here, you go."
A life is no less valuable because it's short.
* * *
You're the one whose child died, Linda Ancona said when she first met Lee Green.
It took Green's breath away.
Not the bluntness of it. Just that it was going to be harder for Green to do what she does.
Green would rather Jason's death not be the first thing that parents new to the cancer program find out about her. It's just one more reason to give up hope, and Green believes there's always hope.
Linda Ancona and her husband, Cliff, had just been through the kind of "informing interview" in which Green, years earlier, had learned the details of Jason's leukemia.
Like Jason, Fred, the Anconas' 10-month-old son, had leukemia. Linda and Cliff were convinced he would not live another day. Thirty percent/ninety percent, the doctors had said when Cliff had pressed for specifics.
They meant 90 percent of children of Fred's age and medical condition would see their leukemias go into remission for months or even years. But long-term, only 30 percent would survive.
It had been a day of terrible news and unwelcome new faces. Green's was one more face, and Linda Ancona just didn't want to bother.
Green pressed on, anyway. If you look at Jason's history, he had lived for two more years, and they had been good years.
Also, look what had happened in intervening years: The odds of recovery for the kind of leukemia that Jason had have risen from 50 percent to 65 percent.
A month from now, once you get your child away from the hospital, see the treatments beginning to take effect, you'll begin to feel more hope.
You'll be sitting home; he'll be doing what he's supposed to be doing, throwing a baseball, walking.
The Anconas looked tired and worn.
Green, looking at little Fred, could see why.
"There were deep, deep circles under his eyes, and he was a gray color. He was whiny and crying and clingy," she says. "It's hard to believe how sick he was."
"If you have any questions, that's what I'm here for," Green tells them, "to make a difficult situation a little bit easier."
* * *
If for Lee Green the first sign of her son Jason's leukemia was the frightened look on the doctors' faces, for Linda Ancona it was how nice everybody was being to her.
"Everyone kept coming in and giving me coffee," she says.
The doctor had felt the 10-month-old's spleen and liver, and then ordered blood tests. People were being too nice.
Leukemia, the doctor said.
"You just go numb," Linda Ancona says. "You think it's a joke. You think he's got the wrong blood test, the wrong kid."
For two months, while Fred fought cancer and infections, Linda camped out on a cot next to his hospital bed. Her husband returned to work. Sometimes she wouldn't leave the hospital for two weeks at a time.
Green was spending a lot of time with a family in the next room, and she made a point of coming to see the Anconas. They warmed to her.
"I looked forward to her," Linda Ancona says. "There are so many questions. You need to talk and cry. You could sit and talk and cry."
The Anconas wondered whether Fred would make it through another day. Cliff even inquired about a burial plot.
Green knew that it was just not that grim.
One way for them to realize that was to visit the twice-a-week clinics for children who were getting treatment after they had been released from the hospital.
Linda used every trick and excuse she could think of to avoid that tour. Her mother was visiting. Or wasn't. Either way, she couldn't leave Fred.
"I didn't want to see - what? A little bunch of cancers."
Somehow, after a month, Green led her down the twisting corridors from the Potter Building into the clinic area.
Linda Ancona was stunned.
Instead of what she had feared, she saw robust, laughing, active children. Searching for a description, she finally says: "They are like this," and she is pointing at Fred.
As time passed, Linda began to believe what Green had been talking about. She saw it before her very eyes.
She looked at Fred and saw what she had seen since he was born: a "strong, healthy" boy who fought off two infections, in addition to the cancer, when he was in the hospital.
There is not a day that goes by, Linda says, that she doesn't think of the worst that could happen. She differs from Cliff, she says, in that her husband is able to concentrate on what is before him now.
"It hurts," she says. "It hurts everything. It hurts your marriage and your family."
How do parents do it?
"You just do," Linda says. "You have to."
* * *
To her refrigerator door, Lee Green has fastened this fragment from Robert Frost, so she can see it every day: "In three words, I can sum up everything I have learned about life: It goes on."
But even more than the future, she believes in the present.
And that small things count.
Being available by phone at night. A sandwich for a mother who can't remember to eat. Every couple of months, persuading parents to get away to a restaurant, to relax and talk among themselves.
She remembers the night before one girl died, she asked her parents whether there was anything else she could do. The mother said she had a "splitting" headache.
"I went and got some ice water and aspirin," Green says. "Doesn't that sound ridiculous?"
The next day, when the girl died, Green cried with the parents.
But not as she cried when she got off by herself.
Green goes back to her office at times like that, and just sits there and cries for as long as it takes.
* * *
Linda had made pickles, and she invited Lee to her home to sample them.
Out of the blue, Linda popped the question.
"What do you think the odds are?"
"Linda," Green remembers saying to her, "you've got him today. You have to enjoy him today. He looks wonderful."
* * *
At 16 months, Fred walks around his house like King Kong at home in his personal jungle.
He has a round, expressive face. He laughs but then looks very worried at a visitor wearing a sport coat and a tie. Too much like a doctor, his mother explains.
It is a warm fall day. The sky is the kind of blue you find on color charts in paint stores, and the air is soft and sweet. Leaves are just beginning to turn on the Anconas' neat, suburban street in Warwick.
Linda shows a visitor to the side door, and Fred comes along, with his King Kong walk, and he sees a pumpkin on the front step.
"Pum'kin, pum'kin," Fred squeals, and he is running to the brick steps. He turns and sits next to his pumpkin, back resting against the front door, Huckleberry Finn on a fall day, waiting for Halloween.