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"E:60" talks with Carlos and CeCe Boozer about their fight against sickle cell anemia.
Their 15-month-old son Carmani, asleep in his crib in a nearby room, had a severe case of sickle cell anemia. In a little more than an hour, in an 8-foot-square, glass-walled room at Miami Children's Hospital, doctors would put a central line in his fluttering chest and begin preparations for an intensive round of chemotherapy in advance of a complete cord-blood stem-cell transplant. The process would involve weeks of painful treatment. If it worked, Carmani would be free of sickle cell disease. If it didn't work, if he became infected or his system rejected the transplant, he could die. CeCe turned off the alarm, took a shower, and got dressed. She picked up Carmani and held him to her chest. She draped a small blanket over his shoulders and headed for the front door, toward Carlos, the car and the hospital. She did these things not because she was ready, not because she was certain. She did them not because she knew God would provide and protect (although she clung to that hope), nor because she was brave (although she certainly was). She did these things, one frightened foot in front of the other, because they were all she knew to do, because not doing them, because waiting for the disease to hurt her son or to take him away, would have been unbearable to her. Sickle cell anemia is an inherited disease in which the body produces abnormal sickle-shaped red blood cells and low levels of the protein hemoglobin, which carries oxygen from the lungs to the rest of the body. Normal disk-shaped red blood cells flow easily through a person's blood vessels, but sickle cells stick to one another, clumping and blocking blood flow through limbs and organs. The blocked flow can lead to a variety of conditions, including periodic attacks of severe pain throughout the body (called sickle cell "crises"), swelling of the hands and feet, a high susceptibility and severe reaction to infections (such as pneumonia, meningitis, influenza, and hepatitis), pulmonary arterial hypertension, blindness, organ failure and recurrent strokes, even in the very young. One in 12 African-Americans carries the sickle cell trait, and there is a 25 percent chance that a child could inherit the disease when both parents are carriers, as is the case with the Boozers. Roughly one in 500 African-Americans is born with the disease, and according to the Sickle Cell Disease Association of America, typical sickle cell anemia sufferers live only until their mid-40s.
It was her son's diagnosis, but when the doctor said "no known cure," it felt as if he were talking about her. This cruel flaw in Carmani's system came from her and from Carlos, from their union. She had been adopted, didn't know she carried the trait. She should have done more research, should have known this could happen. Maybe they were being punished for something, for every wrong thing they had ever done. The air went out of her lungs. The walls pressed in around her. She wanted to disappear. Hit something. Cry. She did cry. It came in floods. Emptied her. Flattened her. And then somehow, because she knew Carmani needed her to do it, she picked herself up.
Courtesy the Boozer familyCeCe Boozer refused to accept anything short of a normal life for Carmani.
Carmani had developed symptoms when he was just 2 months old. His hemoglobin count was low, and his feet and hands were swollen. He was admitted to the hospital with a fever of 105 degrees and put on a course of antibiotics over four days. During the next year, this pattern repeated itself. Doctors described the promise of drug trials and the benefits of blood transfusions, and suggested Carmani participate in studies that might one day lead to a cure. They told CeCe the best she could do was to manage his pain, to soothe him as much as possible. They told her the chances were good he could lead a "somewhat normal" life.
She turned the words over in her mind. Somewhat normal. The kind of thing you say if you're not the one going through it.
The waiting room at the sickle cell clinic was always full. A 4-year-old stroke victim, the right side of her face fallen, sat next to CeCe and Carmani. A boy, whose ankle and knee joints made it too painful to walk, slumped in a chair across the room. A kid coming off his third "crisis" in two months, fresh out of the hospital, longing to get back to school -- to feel, just for a minute, the rhythm and movement of a normal day -- lay still in his mother's lap in the corner. CeCe saw two futures. There was the one she wanted, the one in which her son ran and jumped the way his father does, the one in which she and Carmani laughed as they rolled together down a grassy hill. The future she'd imagined when she had first learned she was pregnant, when everything seemed possible. At the same time, all around her was the future she dreaded, the one in which her son's body would betray him and he would struggle to move, curled up and hurting, the one that ended much too soon. She stood on the edge between them. Would she be the mom she had seen in the waiting room? Would Carlos be that dad? Would Carmani be that boy? There had to be something else.
Vanessa M. Lam/VLM StudiosCarmani appeared healthy before the procedure, but the Boozers feared the day the disease would strike.
Just thinking so was an act of faith. She remembered how her mother had worked two jobs and sometimes went without dinner so CeCe would have enough to eat when she was growing up outside Durham, N.C. She thought about Carlos as a boy, shooting a ball at a makeshift basket on a cold driveway in Juneau, Alaska, and somehow finding his way to the NBA. She believed God would come through for them if they did their part. She committed herself, right there in the waiting room, to the American Dream, to the idea that you write your own story, fate and circumstance be damned. Isn't that what we're taught from the time we are kids? Don't ever be satisfied. Whatever you can dream, you can achieve. Isn't that who we're supposed to be? Carmani was barely 4 months old when Carlos returned to Utah Jazz training camp in Salt Lake City in the early fall of 2006. The family couldn't be together because sickle cell symptoms worsen at high elevations, and Salt Lake City is 4,300 feet above sea level. The separation was torture. Carlos couldn't do anything. He wasn't even there to hold Carmani's hand. Workouts were the power forward's sanctuary, a couple of hours when things made some kind of sense, when he could exert force and have control over outcomes. He cherished the specific dimensions: 94 feet of hardwood; a basket 10 feet off the ground. He took comfort in simple routines: Know your responsibility on ball rotations; be quick on the pick-and-roll. Back home in Miami, CeCe hit the books, scoured the Internet and made phone calls to doctors and scientists to learn everything she could about sickle cell. She read medical journals detailing approaches to treatment and pain management. She traveled to sickle cell centers in Los Angeles, Boston and New York. The people she met told her that regular blood transfusions and promising new medications were helping to quiet the most severe symptoms in many patients. She pressed on. There were days it felt like a battle she couldn't win. But if she quit, what would she say to her son each night at bedtime? How would she tell him he'd have to suffer and that's just the way it would have to be? Maybe she couldn't win, but to surrender was no way to live.
AP PhotoCarmani, pictured here in November 2007, finally left the hospital after more than 40 days of treatment.
Finally, at a clinic in Atlanta, she heard something new. Doctors there had been doing bone marrow transplants for years and recently had been eradicating sickle cell anemia, among other blood diseases, with the procedure. It was a revelation, a possible way out. She went back to the library and the phones to study up on bone marrow transplants and learned an infant sibling who could donate cord blood (rather than bone marrow), rich in stem cells, from an umbilical cord would offer the best chance of a successful transplant and a cure. But a second pregnancy for CeCe and Carlos would mean the risk of a second child born with sickle cell disease. And there would be no guarantee that a second child, or a third, or even a fourth, would necessarily be both free of the disease and a genetic match for Carmani. They couldn't risk it. They began talking about in vitro fertilization and genetic screening instead. CeCe pulled together a team that included an in vitro specialist, Dr. Michael Jacobs in Miami, who would biopsy the Boozers' developing fertilized embryos and later perform an in vitro fertilization; a geneticist, Dr. Mark Hughes in Detroit, who would test those embryos in order to determine which of them were sickle-cell free as well as genetically compatible with Carmani's immune system; and a transplant expert, Dr. John Fort at Miami Children's Hospital, who would transplant the sibling's cord blood into Carmani's system, replacing his bad stem cells with healthy ones. Twenty-six eggs were fertilized and began to develop. Ten were genetically compatible. Two of those were disease-free, and both were implanted in CeCe's uterus in case one of them didn't develop. Six weeks later, the Boozers learned they had twins on the way. The second wave of guilt came hard and fast. CeCe had been so focused on finding a way to save Carmani that she'd never stopped to think about these babies. They weren't for her or for Carlos. She wasn't bringing them into the world out of love for them, or for what they might be or for who they might become. She was bringing them out of love for the suffering son she already had. She watched her abdomen grow and tried to feel for them. She couldn't picture them. Maybe there was no room in heart yet. Carmani was everything. Save Carmani. That was the mission. Some days he was fine. He smiled and laughed. He tossed a ball. You never would have guessed he was sick at all. But there was always the threat. What if germs on the door handle to the doctor's office took root and spiked the fever, and what if the antibiotics didn't work next time? She always wondered what was coming next and how long would it be until things turned much worse. She never relaxed, because some days he was fine and other days he was pale and weak and sore, and his tiny brown eyes begged her for help.
Melissa Majchrzak/NBAE/Getty ImagesDuring the national anthem before games, Carlos would find solace and ready himself for a night in the paint.
On game nights, a world away, Carlos lost himself in the national anthem. He stood in his warm-ups, in a line with his teammates along the Jazz bench, and closed his eyes as the music played. He pictured himself back home with Carmani and CeCe. He could sometimes see Carmani's face, the little smile that seemed to say he knew everything was gonna be OK. He asked God to watch over them. He steeled himself for the game to come and found his focus in dedicating to his son what he would do on the floor that night. Boozer had been drafted in the second round of the 2002 NBA draft, the 35th overall pick, behind lesser talents such as Melvin Ely, Chris Wilcox, Nené Hilario and Drew Gooden. He kept those names, first on a piece of paper in his wallet and later in his head. Every game was a chance to prove he was better than they were, to prove the teams who had drafted those players ahead of him had underestimated his will. He tapped now into that same place in taking on sickle cell: Play all-out for Carmani; play to prove the disease couldn't beat them. The phone calls were often hard, full of long silences and frustrated outbursts. CeCe felt overwhelmed. Carlos felt powerless. You want to believe adversity will bring you together. You want to believe your love is enough to cross the distance between you. But the truth is the disease seeps into every little crack and drives a wedge. He couldn't fully appreciate all she had learned at the doctor's office. She couldn't find comfort in how much he wished he could be there. Every time they saw each other, it felt as they were starting from scratch, as if they barely knew each other. And whenever he went away, it took everything she had to stay in touch at all. She wondered whether it was worth it, to be with someone when you were 3,000 miles apart. The disease, the worry, the work of finding some solution for Carmani, the effort to carry the twins drove her inward. Some friends stopped calling because they didn't know what to say. Others advised against what she was doing because they thought the risk she was taking, when Carmani wasn't really, truly sick yet, was too great. And they could have been right. There were no guarantees. The disease could come on strong soon. It could hang back and let Carmani grow for a while. But eventually it would strike. She had seen it. She knew it was no way to live. And in knowing that, she was alone, the only one who believed what she believed, the only one she could count on. The twins, Cameron and Cayden, were born July 18, 2007. The guilt fell away in an instant. The boys fit perfectly in the crooks of Carlos' arms. They were beautiful. They made the family whole. The heart doesn't divide, it expands. Doctors put their cord blood on ice.
Courtesy the Boozer familyWhen Cameron and Cayden joined the family, the Boozers experienced a new kind of joy.
Seven weeks later, CeCe's alarm went off at 4 a.m. She had seen more of Carmani's suffering, and more of the insides of clinics and libraries and waiting rooms, than Carlos had. When they visited Carlos for nearby Jazz road games, the boy seemed rambunctious and full of joy. But Carlos saw a pattern, a message, in all that his wife and son had gone through leading up to the transplant. At every turn, her commitment had produced some new opportunity. She came upon the idea of a transplant when she had been offered no hope. She met the doctors who would say "Yes" when others had said "No." The in vitro process was successful on the first try. Two embryos were compatible and disease-free. Both embryos thrived, giving them Cameron and Cayden. They kept coming to doorways. They kept pushing. The doorways kept opening. God had met them half way, gave them everything they needed.
Vanessa M. Lam/VLM StudiosThe Boozer brothers now share a bond that goes beyond typical siblings.
So the procedure began, as chemotherapy wiped out all of Carmani's immune system to make his body more likely to accept his brother's transplanted stem cells. Like starting fresh, as a baby, CeCe thought. The glass room was so small that Carlos could spread his arms and touch opposite walls at once. It wasn't a room so much as a hermetic chamber -- every doctor, nurse and visiting parent soaped and scrubbed raw from fingertips to armpits. A common cold could kill the child. Carmani was too young to talk, but his small body spoke volumes. His hair fell out. He vomited repeatedly and lost a great deal of weight. His skin turned ash gray and sloughed off in patches and flakes. His temperature swung to extremes. He developed open sores in his mouth, making it almost impossible for him to swallow. And he was, sadly, unrecognizably slow to smile. The hospital measured the time in days: two four-day courses of chemo; two days of metabolizing the drugs out of Carmani's system; the transplant at Day 11; a test for his white blood cell count (a marker of whether the body is accepting the transplanted cells and generating a new immune system) at Day 14, and again at Day 30. CeCe and Carlos measured the time in bits and pieces: day shifts for her, nights for him; the beat between Carmani's shallow breaths; the 10 minutes it took to drive from the hospital back home to the twins every night (the only time they allowed themselves to cry); the seized-up second when they heard Dr. Fort say Carmani had developed a post-transplant infection just before the drawn-out sigh when he explained how they would fight it; and the moments, the minutes, the hours when they would just sit still by Carmani's side, CeCe's fingers gently rubbing his forearm, the palm of Carlos' hand on the crown of his head. They wanted to be in his place. They wanted to take on his pain. They wanted to be the ones all this was happening to. And of course they were. They had ended up here, gazing at their son and at the monitors that tracked his vitals, through acts of will and perseverance, through CeCe's hard work and Carlos' staunch faith, through choices they made even when they couldn't completely know the consequences. They had ended up here because they gave the disease no quarter, even when it threatened to take away everything that mattered to them, including each other. They had ended up here because they declared their love not just as care and sympathy for their boy but as aspiration, too, as a thing that claws and fights and wants every inch of the life he deserves. And yet those actions which defined them also reduced them, humbled them, brought them to a place of utter powerlessness, to a place where they barely existed, where in the end they could do nothing more than watch and wait and hope. Maybe this was true love, fearless love -- when you know you can't control what happens anymore, when you give up that idea of yourself, and are willing to let everything go. As the days after the transplant passed, Carmani's white blood cell count climbed steadily. His brother's stem cells found their way into his liver, spleen and marrow. On Oct. 7, 2007, 40 days after Carmani entered the glass room at Miami Children's Hospital, he was allowed to go home. He had been in the room so long Carlos had to lure him out the door by putting a toy truck down on the hallway floor and encouraging him to go get it. Carmani looked at his dad and at the truck. He hesitated for just a moment. Then he crossed the threshold, grabbed the truck and was gone. Like Christmas, Carlos thought. A rebirth. In May, doctors declared Carmani completely cured of sickle cell anemia.
Ezra Shaw/Getty ImagesWith Carlos on the road in the NBA and CeCe home in Miami with the boys, the family struggled with separation.
In September, on a weekend trip to New York City, 27-month-old Carmani and his 14-month-old brothers ran down a short dirt slope in Central Park. They petted two white poodle puppies belonging to a couple out on a walk. They picked up leaves and climbed rocks. They roamed into dappled light in three directions. Carlos and CeCe followed, holding hands. Carmani rolled a basketball into one of the park's pedestrian tunnels and seemed to disappear in the shadows below. "Hey, Boom Boom! Come on back," Carlos called. "Let's stay together." The boy came running, his arms wrapped around the ball and his bright brown eyes smiling. His mother scooped him up.
Boozer's Buddies As they continue to celebrate the simple joys of life with their three young boys, the Boozers want to help other families stricken with sickle cell anemia. CeCe and Carlos recently established Boozer's Buddies to raise awareness of the disease and the developing approaches to care.
"When Carmani was ill, I wanted information more than anything," CeCe says. "We want to help give parents what they need to care for and fight for their children."
Toward that end, in addition to providing information, Boozer's Buddies will raise money for research and treatment as well as help fund a transplant procedure for one child like Carmani each year, a procedure that typically costs between $300,000 and $400,000. The organization also will offer grants to nonprofit groups engaged in the fight against sickle cell anemia, and provide funding for a program at Mount Sinai Hospital in New York City that helps families with in vitro fertilization and genetic screening in advance of cord-blood and bone-marrow transplants.
"I know now what my life is supposed to be about," Carlos says. "Basketball is a love, a passion for me, but after everything that has happened with Carmani these past two years, I know this is my purpose."
After they got word of the cure, there were times CeCe saw everything now through then and everything here on the way to some place up ahead. Carmani stood on her lap in a hansom cab and pointed at the horse pulling them along at a trot. "He fast," he said. "We racing!" She could feel herself collecting memories, putting together the story that comes after the story. And it was wonderful in all the ways you would imagine it to be: colors bolder, smells stronger, the peal of her son's laughing voice brighter than ever. It healed her, told her she wasn't crazy, proved she was right to push, right to take the chance.
"Look at him," she said. Look at him. For so long, that phrase had meant anxiously watching his feet and hands for swelling, his forehead for signs of fever, his eyes for signs of pain. For so long it had meant wondering what was coming next, what was about to happen and when. Now it meant, Look at him here in Central Park. Watch him, let's see what he might do. But that wasn't even the best of it. The best of it was the routine stuff. In early October, just a few days after the one-year anniversary of Carmani's release from the hospital, the brothers sat side by side by side in plastic booster seats eating lunch in the Boozers' kitchen in Salt Lake City, where they all live together now that Carmani is healthy. CeCe spooned a bit of food into Cayden's mouth with her right hand and undid the tray on Carmani's seat with her left. The night before, Carmani had knelt by the side of his bed with his parents and said his prayers. Just like he had the night before that. In the morning, Carmani had climbed into his parents' bed and awakened Carlos with a kiss. Like he did every day now. That afternoon, he and his brothers had kicked a soccer ball in the back yard with Carlos' mother, Margarita. Like they would again the next day. You don't come back to your old life. You're better because your son is better, but you're different. What you have been through has changed you. You come back to living, to being in the moment, to feeling normal, in fits and starts. You do it in little gestures and simple rituals. You piece yourselves back together.
Vanessa M. Lam/VLM StudiosThe Boozer family portrait from July 2007 is exactly how CeCe always envisioned it.
Carmani stood on the coffee table in the sitting room and jumped into Carlos' arms. "Daddy plays basketball!" he said. "I play football! Mommy plays soccer!" A few minutes later, he and his brothers tackled CeCe to the floor and crawled up on her like lion cubs. She laughed and laid on her back looking up at them. "Hang on, hang on," she said, putting her hands on Carmani's hips to hold him still. He had a runny nose dripping down his face; the boys all had colds. She grabbed a tissue from a box on the table and wiped him clean. She balled up the tissue and tossed it back on the table. "Better?" Carmani asked. CeCe nodded and wrapped her arms around him, then wrestled with him on the floor. Like they were rolling down a grassy hill.
Eric Neel is a senior writer for ESPN.com and ESPN The Magazine.
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Vanessa M. Lam/VLM StudiosWith Carmani now free of sickle cell, the entire family is together in Salt Lake City.