By partnering with teachers, The Max Warburg Courage Curriculum empowers students to discover the value of courage and develop English Language Arts proficiency.
The Max Warburg Courage Curriculum is a model English Language Arts curriculum for empowering students to learn about and continue to exhibit courage in their lives and for inspiring others to make bolder and more courageous choices.
The Max Warburg Courage Curriculum, Inc.
263 Huntington Avenue, Box 366
Boston, MA 02115 United States
Board of Trustees
Board of Trustees
Stephanie Warburg, Founder and President
Frederick Warburg, Vice President
Barbara Hawkins, Treasurer
Amy d'Ablemont Burnes
Elizabeth Evans D'Ascensao
Corey Bennett Lewis
Ann Ogilvie Macdonald
Jenny Toolin McAuliffe
Kristen S. McEntyre
Carrie Minot Bell
Suzanne Fischer Bloomberg
Joan Bennett Kennedy
Carrie Minot Bell
Katie Schuller Bleakie
Robert Gittens, Esq.
Ann L. Gund
Felicity Forbes Hoyt
Katherine McManmon Hoyt
Diane Rowan Rockefeller
Rev. Liz Walker
MAXCourage works closely with the following educational
organizations to bring the courage curricula to students
across the U.S. and around
Northeastern is a global, experiential, research university built on a tradition of engagement with the world, creating a distinctive approach to education and research. Having been a MAXCourage partner since 2006, Northeastern not only houses our staff and helps publish our annual essay publication, but also works with us to analyze our program and ensure effectiveness and efficiency in carrying out our mission.
University of Michigan School of Education
The University of Michigan School of Education focuses on the study and improvement of teaching and learning, as well as the interactions, sense-making, and dynamics that shape teaching and learning. They help MAXCourage adapt and introduce the courage curriculum to Detroit Public Schools.
The Heller School, Brandeis University
The Heller School drives positive social change through research, education, and public engagement that inform policies and programs designed to address disparities in well-being and promote social inclusion in a sustainable way. Students at the school help MAXCourage implement the curriculum abroad, in countries like Lebanon.
Learning Pathways is an innovative learning organization that collaborates with institutions and educators to develop quality solutions based on contemporary and tested models of teaching and learning. MAXCourage works with Learning Pathways to adapt our curricula for schools in Pakistan.
Glasswing International, El Salvador
Glasswing International is an innovative non-profit that addresses the root causes of poverty and violence through education, health care, and community involvement.
The Cambridge Cambodia School Project
The Cambridge Cambodia School Project is a volunteer community learning about Cambodian students and how to best support the education of middle school students in rural Cambodia at the school we built in 2008: Each year 8th grade Cambodian students write essays on courage in Khmer, their native language. The winning essays are then translated into English and published in Boston by maxcourage.org.
WriteBoston promotes deep learning through writing. They offer training and coaching for teachers, along with writing opportunities for students, built on the premise that powerful thinking and writing are inseparable. Write Boston works with The Max to help offer professional development for teachers who use our curriculum.
Founded in 1991 by Stephanie and Jonathan Warburg, the Max Warburg Courage Curriculum is named after their son Max Warburg, a courageous 11-year-old young man who lost his battle with leukemia that same year. Max’s steadfast determination and heartfelt hope in the face of a deadly disease inspired all who knew him. To honor Max’s story and encourage other youths to reach their maximum potential, Stephanie and Jonathan worked with the Boston Public Schools and educators around the country to develop and create the courage curricula.
MAXCourage has grown exponentially since its inception. Almost all Boston Public middle schools, as well as charter, private, pilot, and parochial schools in the surrounding communities, use the sixth grade curriculum. Our program is also taught in ninth grade classrooms, as part of a national essay contest, and in schools as far away as Cambodia and the United Kingdom.
By Stephanie Warburg and Charlotte Harris
Max Warburg was born and brought up in Boston, Massachusetts. Not long ago, Max lived in an apartment near the center of the city with his parents and his brother, Fred. Max was two and a half years older than Fred. Max had wavy light brown hair and bright brown eyes, and Fred had straight black hair and hazel eyes, but when they smiled, they looked a lot alike even though Max was much bigger.
The boys liked sports. They liked to swim in the summer, ski in the winter, and sail whenever they got a chance. Mostly, their father, who was an architect, had to work, but as often as he could he took the boys sailing, teaching them to tie lines, trim sails, and steer a course.
“Here,” he would say, “Max, you take the wheel. Fred, you hold this line tight and Max will sail us out of the harbor.”
And Max would. He’d stand at the helm the way he thought his father stood. Eyes on the sail to be sure it didn’t spill its wind, both hands on the big wheel, and feet spread apart, wind blowing his hair and puffing out his jacket, Max would play the part of the captain, dreaming of the day he would have his own boat. He knew exactly what he wanted. A sixteen-foot, drop-centerboard boat called a 420, just the right size for a twelve-year-old, which he figured he would be before he would ever get his 420. Then he could take Fred on some great sails, even on the days his dad was too busy. Better yet, then he could race and maybe win.
He knew what he’d call his boat, too. Take It To The Max, he’d call it, not just because it had his name in it, but because it sounded like the sky was the limit and that’s how Max felt.
Max had other dreams. Ever since he was little, Max had been good at imitating people. His mom would talk to someone on the phone, and when she hung up, Max could imitate her ‘talking to a stranger’ voice or ‘talking to her best friend’ voice perfectly. He could hear an accent once and reproduce it exactly. He could mimic actors and other kids, making his friends laugh and fascinating everyone with this ability.
“You ought to be an actor when you grow up,” people would tell him. So he started looking at the actors on TV with his mind on learning acting skills and camera angles.
“Mom,” Max said one day, “Do you think I could ever be on TV?”
“Well, I don’t see why not if you work at it,” she told him. Max’s mom was an artist, and it pleased her to see her son interested in growing up to be in one of the arts. Max joined a children’s theater group and went for acting lessons. He started to gain the confidence an actor needs, and signed up with an agency that looks for children to act and model. One day a call came.
“Max, do you think you’re ready to act in a television commercial?” the agency representative asked. “Sure I am. Will my friends be able to see me?” he replied.
“Not this time. This commercial is going to run in New Jersey, but maybe next time. Will you do it anyway? Right away?”
“Oh, yes! This is my first chance!” Max ran to get his mom, and, alive with anticipation, Max, Fred, and their mom drove to the studio. They parked and went inside to spend a day taping and retaping. Max watched the professionals, followed directions intently, and caught on quickly to what was expected of him. When the long day was done, Max tried to guess when the next time would be that he would get a chance in front of the cameras. He couldn’t have guessed then that six short months later he would be a frequent talk show guest, but not for a reason anyone would want.
For Max, acting was fun and easy, and so was schoolwork. He loved to be with his friends in school, and he loved to read and figure things out. He loved to laugh and play jokes. At school, they called Max the peacemaker. Kids would argue or get to fighting, but Max would get into the middle and try to calm things down. Being a good sport and thinking of the other guy were Max’s way. In tense situations, Max would be the one to lighten things up with a joke.
Not everything came easy. Living in the city surrounded by buildings and pavement, Max didn’t have much chance to play ball, but he wanted to. As soon as he was old enough, Max joined a baseball league. They played on the Boston Common. Max was the youngest player and afraid of the fast balls coming straight at him over home plate. A couple of times he didn’t get out of the way of the ball and it hit him, but he didn’t let it get him down. For one thing, he knew Fred was watching and he knew as the big brother he’d better get right back up. Max was philosophical about his shortcomings. “I’ll be better next time,” he would say, and then he’d work at it. He never missed a practice. Even though he never got to be the best player on his team, by his third season his teammates knew they could count on him for a solid performance.
During the summers, Max and his family left the city for the seashore.
One morning in July 1990, when Max was eleven, Max’s mom needed something at the hardware store, and Max was looking for something to do. “I’ll go. Let me do it,” he said, and he got on his bike and pedaled off toward town. About a mile from the house his front tire hit a pocket of sand the wrong way. The wheel skewed around sideways and Max fell the short distance to the ground. He landed on his shoulder, the breath knocked out of him. Hot burning pain filled his stomach and chest, making him curl in a ball and squeeze his eyes shut.
Max knew something was wrong, more wrong than just a fall from his bike. Max’s mother knew something was really wrong as soon as she saw him walking beside his bike, steps slow and head down. Before he could get in the house she had him in the car and on the way to the local hospital emergency room.
“Max fell off his bike and he doesn’t feel right,” Max’s mom told the doctor.
The doctor felt Max’s back and side and the smile left her face. “What’s this here? His side is all swollen. I think he’s ruptured his spleen. Max is in trouble.”
“What kind of trouble?” Max and his mom said, almost at the same time.
“I’m not sure, but we need to find out fast,” said the doctor, frowning with concern.
She called an ambulance to take Max to Children’s Hospital back in the city. Siren and lights clearing a path, the ambulance rushed up the highway to Boston, barely slowing down for the tight corners near the entrance to the hospital. Max was wheeled straight into the emergency room.
“This doesn’t look good,” the emergency room doctor said.
“If my spleen is split, why don’t you operate on me and sew it up?” Max wanted to know.
“Can you sew Jell-O? That’s what a spleen looks like. Not much to look at, but good to have because that’s what your body uses to clean your blood. Mrs. Warburg, this boy is going to be here for at least ten days.”
Sad and frightened, Mr. and Mrs. Warburg made their plans. Max’s mom would stay with him, and his dad would take Fred back to the shore to keep things as normal as possible for him. The news from the hospital wasn’t good. It looked as if Max had leukemia, a dangerous cancer in his bone marrow, but the doctors weren’t sure which kind of leukemia he had. Some kinds were less difficult to cure, and some were easier to bear than others. Hoping their son had the commonest kind that could be cured, the Warburgs started to learn about leukemia.
The results of the blood tests came back. Max had a rare form of leukemia, found in one in a million children. The lab doctor told Max’s parents, “Now that we’ve seen these results, I wonder how Max ever got himself off the ground and back to the house the day he fell off his bike. He must be a very determined boy.”
“Yes, he is,” Max’s father said. “He is going to need to be.”
It was Dr. Susan Parsons who told Max what he had. "Leukemia is hard to beat. You’ll have to have chemotherapy and radiation stronger than one hundred thousand X-rays. In order to test your blood and feed you, we’re going to have to make an incision near your heart and insert a tube. You can’t play ball and you can’t play soccer or ride your bike. If your spleen gets hit again, it will kill you.”
Max thought a bit. “Tell me what is going to happen.”
“Statistically, I think you’ll be okay, but you have to have a bone marrow transplant. Do you know what that is, Max? That means taking the fluid out of the middle of all your bones and then putting in the fluid from someone else’s bones in its place. We can’t do it unless we can find the right donor—someone whose bone and blood type match yours almost exactly. Often, not even members of your own family are a close enough match. Right now, there are about six thousand people out there looking for the one perfect match to save their lives. You’ll be joining them, Max. Your chance of finding a match is about one in twenty thousand.”
Again, Max thought a minute. “So, there are six thousand others. Okay, I’ll be six thousand plus one. I’ll be one of the lucky ones.”
“You already have been. Because you fell off your bike, we were able to catch your disease early, before there were other symptoms. If we get a donor fast, time will be on your side.”
After ten days of testing, they let Max come home to the apartment in Boston. Every week, in order to adjust his medicine, he had to go to the hospital for blood tests, which meant a little needle, and for blood samples, which meant a big needle and a tube. Max hated needles. His mother knew he hated needles and wondered when she didn’t see him flinch each week as the nurse aimed the needle toward his arm. Even the nurse, who had seen so many different kinds of reactions to needles over the years, was surprised by Max’s calm.
“What are you thinking about, young man?” she said to him on one of his visits to the blood lab, not really expecting a reply.
Max answered very seriously, “First, I wait and prepare myself. Then I put all my energy where the needle is going to go, then I make fun of the needle.” On his own, Max had found a way to conquer a fear that, if he did not get the best of it, could make it harder for him to get well.
No sports for at least six months, he’d been told, so he found a calendar, tacked it up, and drew a smiling face on the date six months away. Max had a goal. He knew he’d be sick for a while but he knew when it would be over. On the space for February 6, 1991, beside the smile he wrote, “cured” and underlined it in red.
In September, Max went back to school. When he told Nurse Hoolihan at the hospital that the kids didn’t seem to understand what was wrong with him, she said she’d come to his school and explain. The kids listened carefully to Nurse Hoolihan, but it was Max they wanted to hear the answers from.
“How did you catch leukemia?” asked someone, saying out loud the big question in everyone’s mind.
“I didn’t just catch it,” Max said matter-of-factly. “First, I had to have inherited a particular gene and then I had to have what my doctor said was an accident in my blood cells. One cell went crazy. It started making the other cells produce too many white cells and platelets. My white cells are crowding out my red cells, and that’s not good for me. But, listen, no one can catch this from me.”
You could see the kids were relieved. They stopped sitting so stiffly and acting so polite. Even Max’s teacher and the other grownups in the room seemed to relax a little.
“What can we do for you?” Max’s best friend wanted to know.
“Don’t treat me funny. I’m not supposed to bump my spleen but I’m the same old Max.”
There were reminders at home, too, that his life had changed. Max had to choose whether to give up his kitten, Fantasy, or have her claws out so that she couldn’t scratch him and start an infection. Max couldn’t bring himself to hurt Fantasy that way, so he found her another home. He missed his kitten. “Be careful, Max. Be careful,” it seemed to him his mother kept saying. He missed hearing her say, “Off you go and have a good time,” without a worried look.
The hospital did what it could to find a donor for Max so he could have the transplant that could save his life. His parents were tested and Fred was tested, but no perfect match was found. Close relatives were tested and then friends of the family, and still no match. Wait, the hospital told them, a match might be found in the new national marrow donor registry.
His parents were troubled by waiting. The registry had too few matches and too many other people who were counting on the registry but hadn’t been helped. “We can help. We can learn how to do donor drives.” It was going to be hard, but they knew they had to try. What they didn’t realize at first was that Max would make the donor drive succeed. At first, only the family worked on the drives. Then they were joined by many of their friends, and soon, old friends were joined by the hundreds of new friends Max found through television and radio.
Max’s campaign for a donor was called the “Max + 6,000.” Always, Max wanted people to remember that this wasn’t just for him. It was for Max and all the others in America who needed the one perfect donor. Many people didn’t really know what leukemia was all about or about bone marrow transplants, or how to help even if they wanted to help. One morning, figuring he had nothing to lose and plenty to gain, Max called a radio station to see if he could make his appeal on the air. He spoke on local radio shows. He was invited to talk on Channel 4 and then Channel 7 and then Channel 2. Smiling into the camera, Max would say, “Leukemia is a blood disease that starts in the marrow of bones. I need new bone marrow in order to get better. Come have a simple blood test and see if you can be my donor. Perhaps you will be my MUD, my matched unrelated donor.”
Tom Bergeron, one talk show host, said to Max, “You’re good at this. You look as if you’re enjoying yourself.”
“I am, sir. I wanted to be on TV and here I am. Maybe this is what I was getting ready for. Even if no donor turns up for me, I can help someone else.”
For the people watching Max, it wasn’t pity that moved them, it was Max’s cheerful way of thinking of others before himself. The stations asked him back again and again. Hundreds and eventually thousands of people came to give a sample of their blood and promised to be a bone marrow donor if their type matched the type of anyone in need.
The Boston Globe and The Boston Herald picked up Max’s story. “Max waits for his rescue,” said one headline. “Max leads charge against disease.” The reporters who met him liked Max and wanted to help him. Their stories reassured people and gave them practical information about when and how to become a bone marrow donor.
At every donor meeting, there was Max wearing a “Max + 6,000″ button and a red carnation. Red for blood, he said, and laughed when people asked how he could joke about something so serious. Max would shake each donor’s hand and say thank you. “You may not help me but you probably will help somebody,” he’d say.
Every week, Max’s white cell count got higher. Every week, the need to find a donor got more acute. “It may be getting too late,” Dr. Parsons worried. “We have to find a donor soon.”
Days slipped by. Weeks slipped by. Leaves on the trees outside Max’s window turned red and orange and then brown and fell away in the winds of early winter. Max, Fred, and their mom and dad talked about the little events of each day and about the distant future but not often about the immediate future. They talked about missing the rest of the summer at the shore and about Take It To The Max, the dreamboat. The boat came to mean so much. It meant another summer growing up. It meant having a future. By mid-October, nearly three months after Max’s leukemia was discovered, there still was no donor. “I’m going to order the 420 for Max,” his father said. “It will mean a lot to him knowing the boat is started.” He called the boat builder, who said yes, he could have the boat ready by spring. By the time Max was well, his 420 would be ready to put into the water.
With no donor found, surgery went forward to improve Max’s chances later on, just in case a donor could be found. On November 15, Max’s spleen was removed. He recovered for a week in the hospital and for six days at home. Then, on November 28, the hospital called. The lab had found the miracle match among the last batch of samples.
“Who is it?” Max asked.
“We don’t know, but it’s a perfect match!” the nurse said. Later, during long December days in the hospital, Max and his dad sent the anonymous benefactor a picture of the intravenous bag that held the life-giving bone marrow with a letter that said, “This is all we know of you but we want to thank you!” Much later, Mr. and Mrs. Warburg learned that the donor was a doctor in Seattle, Washington, whose great-, great-, great-, great-grandfather all the way back to the 1800s in Europe was the same as Max’s.
Now, with marrow from the donor, treatment could begin to pave the way for the transplant that might save Max. Chemotherapy would be the worst part.
“Your hair is going to fall out, Max,” Dr. Parsons told him. Max could see that other kids in the cancer ward had little or no hair. “It’s part of getting better,” he told Fred. But he wasn’t sure he would be brave enough. He had seen others going for their treatment and returning exhausted and in tears. He was determined he wouldn’t let the treatment sink his spirits.
First Max had a tube planted in his chest, as the doctor told him would happen, for giving medicine, taking blood samples, and for feeding him because he wouldn’t be able to eat normally. He would have to be almost in isolation in a special environment called the Laminar Flow Room. In the sealed room, ducts brought a steady, moving stream of oxygen down and away from the bed, blowing foreign substances away from Max as his system tried to accept the strange marrow and begin making its own blood.
Except for daily trips to the Total Body Irradiation room—the hospital people called it the TBI—Max had to stay in the isolated room and could see few visitors. When his mom and Fred visited each day and his dad came in the evening, they had to scrub like doctors and wear cover-up coats and hairnets. Even a touch could harm, so there could be no hugs to give comfort and love. Each morning the halls were cleared of contaminating strangers so Max, inside a tent, could be wheeled through the empty halls to the treatment room.
Knowing he’d be lonely and expecting he’d be scared, Dr. Parsons had given Max a tape recorder so he could make a record of what was happening to him. Max told his tape recorder, “Going to TBI is really cool, like being in a space ship. The air coming in from the top of my oxygen tent is exhilarating. I feel like a great explorer from the next century gliding in on his chair.”
The experience in the room wasn’t exhilarating. The drugs made Max sick. He had to stay on a metal table, head on blocks, neck stiff and body sore, for a long time. When finally he sat up, he threw up. The vomiting meant he was done for the day. On his tape Max said, “The table is real hard and it makes my head so stiff, but it’s fun because I can blast my music as loud as I want so it reminds me of home.”
The first seven treatment days were chemotherapy and irradiation. The eighth day, the transplant itself, wasn’t at all what Max expected. Instead of an operation with doctors cutting him open, Max lay on his bed all alone while the new marrow flowed into his body from a transparent bag of clear fluid suspended over his head and connected to him by a clear slender tube.
“How is that going to get into my bones?” he wondered while he watched, then later heard the doctors themselves marveling that the marrow sought its way to the right places once it was safely in his system.
The blood count was critical. After the transplant, Max’s white cell count was zero. They wouldn’t let him out of the Laminar Flow Room until his count was 3,000. One day after the transplant, his count was 20. The next day it was 100, then 150, then 300. Max had a long way to go, but he was making it. His body was rebuilding. Slowly the days passed.
Max knew these days would be hard. The pains doctors had warned about became the pains he felt. Max didn’t complain. Instead, he tried to cheer up other patients stuck, as he was, in the hospital for Christmas. He got his parents to help. Max’s mom and dad brought in a whole Christmas dinner for all the kids and their families in the Jimmy Fund wing, the part of the hospital where Max and the other children with cancer were staying. Teddy Kennedy, Jr., who had cancer when he was thirteen and was now all grown up, brought presents for the kids, along with living proof that they could get better.
Max yearned for breakout day, the day the doctors would let him go out of his room. Finally, early in the new year, on January 2, Max woke to see balloons on the isolation room door and crepe-paper streamers overhead. The nurses, especially Nurse Rohan, his favorite, were celebrating for him. This was it; he was out! By wheelchair to the hospital door, then into the fresh air for the first time in 35 days, and then home. He loved the smell, he loved the look, he loved the feel of home! Everyone in the hospital had been great to Max and he was grateful, but home was where he wanted to be. Back in his own room Max saw again the calendar with the smile marking February 6. It was still almost a month away. “Not quite cured,” thought Max. “But maybe I’ll be better by then. February 6 will be a happy day.”
But it wasn’t. Before long Max was back in the hospital with a high fever. Dr. Parsons sent him home again, uncertain what was wrong. Back he went again for ten days and again he came home no better. Still he had a fever and still he threw up. On February 6, he went back to the hospital again. The smile he was now famous for was still there, but it seemed to waver at the corners of his mouth. Max went back to his isolation room and this time he would have an oxygen mask, the sign of mortal struggle.
Max’s mom and dad and Fred were at the hospital every day, staying with him until the evening when Max, heavy with drugs, fell asleep. The long days in the hospital were hard on Fred. He played with Max, but it wasn’t like the last time Max was in the hospital. One day, sick and exhausted after a treatment, Max was being pushed back to his room in the wheel chair. Fred had had it. Right on the edge of crying, he pulled hard on his mother’s arm, making it difficult for her to push Max’s chair. “Come on, Fred. Max needs you to help out,” she said.
Max was used to being the helper himself. Knowing he was needed, he said, “I can cheer Fred up. Put him here in my lap.”
Fred went into his older brother’s lap, glad to be riding the long corridor and glad to have Max acting like his old self. The two rolled along, Max’s head hidden and arms waving out from under Fred’s armpits, a four-armed, laughing pair all the way from Pulmonary to the Transplant floor. Hearing them, the nurses couldn’t tell that one of the laughing boys was perilously ill until, rounding the corner; they recognized Max and his family.
“That’s like Max,” they told his mother. “At night on the transplant floor, the younger kids cry. They’re in pain and they miss their families. I hear Max call to them, ‘Don’t cry. I’m here. You’ve got a friend!’ You have an unusually brave son, Mrs. Warburg.”
“I’m not sure he realizes,” his mother said. “He says to me, ‘Mommy, do you think I’m brave?’ I don’t know why he doubts.”
“How does he keep his laughter? How can he keep on smiling?”
“That’s Max,” said his mom. “That’s the way Max is.”
On March first Dr. Parsons told Max his life was threatened. The blood transfusions and medicines pumped into him weren’t working well enough. The doctors’ skills and the hospitals’ resources and Max’s own incredible will were losing against the disease. Max saw the solemn faces around him. His body swollen in places, emaciated in places, spotted with sores in places, Max looked Dr. Parsons straight in the eyes and said, “Well, okay, so what’s the plan? How are you going to get me well?” They looked at Max in disbelief, to see his conviction so strong despite his ordeal, and took heart themselves.
“Come here to the window, Max, come look,” said his father.
There in the hospital driveway below, high on a truck and with mainsail flying, was Take It To The Max. Max’s eyes widened in pleasure, his delight evident in every gesture of his excitement. He glowed, knowing the care and love that brought his boat to him at this place at this time. Nurses and doctors all came to exclaim about Max’s treasure and enjoy his infectious happiness.
That night, Max stayed up until close to midnight working on a project with his dad. When he was ready to put out the light, Max and his mom and dad prayed together and thanked God for all the help He had given and all the people who had been so kind to him. Then Max went to sleep. Max died in his mother’s arms, holding his father’s hand, at 6:55 a.m. on March 5, 1991.
In the days that followed there was a terrible silence. The silence swelled and roared, because silences can do that if what you want to hear isn’t there and what you don’t want to hear is everywhere. Then stories started to fill the empty spaces, stories about Max.
Many stories ended with a shake of the head, a glance away, and the simple statement, “Max amazed me then. He was so brave. Children amaze me. I am amazed by the courage of children.”