Against the Odds

There was only a one-in-ten-million chance of finding the right donor match, but Kailee’s parents would not give up until it was found By GARY SLEDGE —————————————– In the winter of 1997 a baby girl was left at a school for teachers in the city of Changde, Hunan Province, China. She had a round face, a bristle of black hair and ears like porcelain petals. She was taken to an orphanage, and from that moment, her fate was in the hands of strangers, until a cold March day in 1998. Linda and Owen Wells huddled together in a dim hallway of a grim government building in Changsha, China. They were waiting for the “baby bus.” After months of bureaucratic snafus, the American couple had come to China to claim their adopted daughter. Linda, short, pretty and intense, was pacing up and down, nervously shuffling through official documents, diapers and formula bottles. Owen, tired from a long night of waiting but calm, kept glancing expectantly out the window. Finally, he saw a van pull up. Nine young “aunties,” orphanage caregivers, piled out with squirming bundles in their arms. The couple recognised their baby at once from the postage-stamp size photo they had been sent months before. She was as round as a dumpling, dressed in seven layers of clothing with a yellow knit cap pulled down over her small head. The auntie gingerly handed her to Linda, whose eyes began to fill with tears. The feisty one-year-old squealed and reached back for her caregiver. It was Owen who soothed her. He enfolded the child in his arms and rubbed his cheek against hers. In seconds, the baby stopped crying and snuggled against him. Her head slipped into the warm curve of Owen’s neck, and she fell asleep. She had chosen them just as they had chosen her. It was a perfect match. Energetic and adventurous Westerners, Owen and Linda had met 17 years earlier at a school for private pilots outside Albuquerque, New Mexico. Owen was captivated by the trim and athletic woman who hopped out of her car in the parking lot. “I sneaked a peek in the flight book for her name and phone number,” he says. They married eight months later. Owen was a former Marine who had built a successful graphic design and printing business. Linda was a single mum with three young children, working as a nurse and taking night classes that eventually led to a law degree. She joined a firm and soon found herself litigating cases involving international child abductions. Her professional focus made her reconsider a long-held desire – adopting an abandoned girl from China. The time was right. Linda’s three children were now out on their own. She and Owen both loved kids. So on their 15th wedding anniversary they decided to bring another child into their family. It took almost two years, but finally they were able to hold their baby in their arms. They called her Kailee. “We will always be here for you,” they vowed. “You will never be alone again.” Linda and Owen brought Kailee home to New Mexico where she grew up quick, smart, generous and gregarious. Owen videotaped her first wobbly steps across the white tiled kitchen floor and Kailee celebrating Christmas in the centre of a tightknit, loving family. Bronzed by the New Mexico sun, she was fast becoming a lean and healthy American girl. “She was such a lively, curious little thing,” Linda says. “She renewed the whole parenting process for us. She had lots of friends, adored dressing up and playing with a kitten she named Rosie.” Kailee’s future stretched before her, promising and secure. Then a few days after her fifth birthday party in mid-January 2002, Kailee came down with the flu. When her temperature spiked to 40.5, Linda and Owen took her to their local hospital’s emergency room, where the Wellses were told she had a virus, and to give her Tylenol, orange juice and bed rest. That night, January 15, was bone-chilling cold on the mountain outside of Albuquerque where the Wellses had recently moved into their dream home, a sprawling wooden house. Kailee, however, still burned with fever. They gave her Tylenol, tucked her into bed and turned out the lights. At 11.20 pm Kailee woke up. Her pyjama top felt wet. Groggy and feverish, she made her way down the stairs to her parents’ room to Linda’s side of the bed. “Mummy,” she said. “I have a nosebleed.” Linda snapped awake and turned on a light. Kailee was drenched in blood. Her pyjamas were soaked red. A track of dark droplets marked her path across the polished hardwood floor. Kailee cuddled into Linda’s arms while Owen ran for towels. She’d had nosebleeds before, but nothing like this. Owen and Linda debated whether or not they should rush down dark, icy roads to the emergency room. But as the bleeding slowed, in fits and starts, they tucked her into bed with them. Linda slept fully dressed, with running shoes still on, prepared to go in an instant. The next morning, they bundled Kailee into the car and hurried down to Northside Pediatrics Clinic in Albuquerque. As they came in the door, Kailee’s paediatrician caught a glimpse of her white and waxy face and called nearby Presbyterian Hospital. “Go there now!” the Wellses were told. Owen dropped them off at the main entrance and Linda carried Kailee straight to the sixth floor, where she was led through the sliding glass doors of the ICU to Room G. Looking back, the Wellses now realise that was the moment they passed through a portal to a universe where transfusions, tests, experimental treatments, doubt and fear would consume years of their lives. For Kailee it was a world filled with adults in white coats and almost a complete absence of contact with children who posed the danger of infection. Kailee lifted her arms and stood quietly as Linda numbly slipped a hospital gown down around her. Nurses and intensivists hurried in and out, checking Kailee’s heart and weighing her while Linda dealt with consent forms. When Kailee settled into bed, they inserted a needle into her arm to draw blood. A doctor ordered a transfusion and a bone marrow aspiration and biopsy for the following day. “What’s a biopsy like?” Owen asked, reeling from the speed of events. “Is it going to hurt her?” The doctors explained that Kailee would be sedated and wouldn’t remember a thing. In other words, Owen realised, it was going to hurt. The procedure involves the use of a needle with a corkscrew-like tip that is inserted through the flesh to the pelvic bone. Then the point drills through the bone to the liquid marrow inside and a sample is sucked out. When she emerged from the anaesthetic, Kailee began to giggle. “Why are those balloons there?” she asked happily, pointing to the foot of her bed. There were no balloons. Even if she didn’t remember, it hurt. Preliminary results came back quickly. A doctor told Linda that all of Kailee’s blood values were down – red cells, white cells and platelets. Platelets, Linda knew, were the crucial factor in clotting. That could explain the bleeding, but what was the cause? A terrifying thought struck her. “Is it leukaemia?” she asked. When told that it could be a virus, a reaction to ibuprofen, leukaemia or something worse, Linda asked, “What could be worse?” “Aplastic anaemia,” the doctor said. After a weekend of worry, conclusive results were ready the following Monday. Owen and Linda were called in for a consultation. Kailee, they were told, did indeed have severe aplastic anaemia, in which the bone marrow stops producing enough red and white blood cells and platelets crucial to life. An extremely rare condition, aplastic anaemia affects about three out of every million people in the United States. Here in Asia, it affects about 15 people out of a million. Linda and Owen were stunned. “What’s the bottom line?” Owen asked. She could have as little as three months to live if she did not respond to treatment. Owen sank back into his chair. But Linda rose to her feet and pounded on the conference table. “No,” she shouted. “This is not going to happen!” Five years earlier, Kailee had been abandoned by her parents. But the parents who had rescued that baby were never going to let her go. On Tuesday, January 22, 2002, Kailee was transferred to the University of New Mexico Hospital, which specialises in paediatric diseases. On Wednesday, doctors ordered another biopsy, the second of over 20 Kailee would ultimately have to endure. Linda and Owen were told that the blood stem cells in Kailee’s bone marrow were almost entirely dead. She had a dangerously low percentage of red cells, white cells and platelets. A blood stem cell transplant from a matching donor is the optimum treatment for aplastic anaemia in a child. As a rule the best matches come from members of the same family. But since Kailee’s relatives were unknown, hospital staff had to turn to donor databases. There were 3.6 million donors registered in the United States at the time. Not one matched Kailee. A hospital social worker told Linda and Owen that finding a match might be impossible. It would be best to focus on other treatments. The next best treatment involved infusing antithymocyte globulin (ATG), a serum derived from horse blood, into Kailee’s bloodstream, along with doses of steroids and cyclosporine, a drug that helps suppress the immune system, as does ATG. In the case of aplastic anaemia, the immune system is attacking and killing the blood stem cells. As with chemotherapy, ATG treatments leave patients exhausted, irritable and very weak. Kailee’s face and body also began to swell from the steroids. She developed body hair and, at times, exploded in rage. Shortly after one of her treatments, Owen came to see her. After washing up, putting on a gown and mask, he pulled a chair close to her bed. She didn’t even look up. Kailee was working furiously away in a large colouring book. “Would you like me to read to you, honey?” Owen asked. Kailee said nothing and went on pressing down hard with her crayons. Trying to comfort her, he started talking. “Not now Daddy,” she yelled. “Not now!” She ripped pages out of her book, wadded them up and threw them across the room. “Go away. Go away.” Owen moved his chair back from her bedside to allow her some space. She was not the little girl he knew. After about ten days in ICU, Kailee was allowed to go home, but only to begin what became an endless round of treatments over the next two months as her health failed. She had fevers and constant bouts of massive nosebleeds, which meant more transfusions and more potent doses of steroids. Owen and Linda could only watch helplessly. As her illness progressed, the Wellses decided to sell their mountain home and bought a house downtown, closer to the hospital. Kailee’s ATG treatments were not working. Linda searched for alternatives and eventually found a doctor who held out a glimmer of hope. He was Dr David Margolis, a specialist in paediatric bone marrow transplants at Children’s Hospital of Wisconsin and one of the nation’s leading experts on aplastic anaemia. “I cannot promise I will heal her,” Margolis said over the phone, “but I will do everything possible and treat her as if she were my own daughter.” Before the family could settle into the new house in Albuquerque, Kailee and her mother went to Milwaukee to pursue Kailee’s treatment. Owen was left behind in a place that was more way station than home. Nothing was in order. During the day, he carried on his business from a cluttered bedroom office lined with filing cabinets and half-opened boxes. At night, he was in the same chair, glued to the computer or the telephone, working to save his daughter. If no match was listed, he would launch donor drives to find one. It was a solo effort at first, but he soon linked up with the National Marrow Donor Program. In Milwaukee, Kailee walked shyly into the Haematology/Oncology Clinic at Children’s Hospital. Dr Margolis greeted her with a pink stethoscope around his neck. She liked the way he looked right into her eyes, calming and unafraid. Part of Margolis’s skill is knowing how to communicate complex medical issues to frightened parents. “Imagine a garden in which seeds have been attacked by something,” he tells them. “Blood stem cells are like seeds. They produce blood. If they die or dry up in the bone marrow, the garden withers.” His objective, Margolis tells them, is to find a way to restore the seeds. Kailee and her mother moved into Kathy’s House, a residence where families can stay while their loved ones are undergoing hospital treatment. It was to be their home for five long months, from May 5 to October 9, 2002. There was a park nearby and on days between treatments when she was feeling strong enough, Kailee liked to go there and take a turn on the swings. She loved the sensation of flying through the air. It was a relief and a respite from the numbing routine of daily trips to the hospital. At night, Kailee would browse through picture books or watch TV. She could no longer play with other children; too often they carried viruses. So she and Linda spent hours in their room. They listened to music together, and Kailee learned the lyrics to The Phantom of the Opera and Chicago. She didn’t always get the words to songs exactly right. One cold day, she broke out singing “Frosting the Snowman was a jolly happy soul!” Linda burst out laughing and Kailee kept on dramatically performing. But over time, the isolation had a depressive effect on them both. Linda missed Owen. Stress and separation were taking a toll on their marriage. On her 50th birthday, Linda ran down a list of her mid-century achievements. “I’m 50, unemployed, living in a boarding house with a sick child, and I’m alone. Not where I was supposed to be.” All this time, Dr Margolis was trying different drug regimens on Kailee. Nothing worked. Desperate to do his part to save Kailee, Owen worked with the National Marrow Donor Program to develop contacts in Honolulu and San Francisco, where he hoped to reach a larger population of Asians. These drives heightened public awareness – Kailee’s story was featured on television – but despite waves of public sympathy, no matches emerged. Once after arranging for Kailee’s care, Linda returned to Albuquerque for a weekend. She walked through the unfamiliar house where Owen was camped out. Boxes were stacked helter skelter; tables and chairs stood around like objects in a storage facility. Her clothes and personal items were lost in the clutter. Everything was a mess. She and Owen looked at each other like strangers. That night she couldn’t stop crying. She cried all the next day too. Both of them were exhausted, but out of that weekend Owen came up with a new plan. They would launch a donor drive in China – and he wanted Linda to lead the campaign. “We can build it around you. A mother going back to her daughter’s motherland to plead for her child’s life – surely people will respond to that.” “No,” Linda said. “Kailee needs me, China doesn’t.” But Kailee was running out of options. In time, Owen’s arguments changed Linda’s mind. Though the odds were impossibly long, she agreed to spearhead their crusade to find a donor. In February 2003, she flew to China with vague plans and only the address of the Red Cross in Beijing. The obstacles to finding a donor for Kailee were huge. One was the deeply held belief among many Chinese that a person’s body should remain intact. Chinese people were afraid even to give a small amount of blood for testing and only a few thousand names were on stem cell donor lists. Linda’s timing, however, proved opportune. Working in her favour was the government’s sensitivity to international criticism about abandoned Chinese girls. Now, here was a grateful adoptive mother, an American no less, begging the Chinese people for help. “You gave our daughter life. Now, I ask you to help save her life.” Overnight Kailee became the poster girl for a nationwide donor registry program. Wherever Linda went, people would point, calling out, “Kailee’s mama!” The press followed her everywhere. The government threw its full weight behind donor registration, using its influence especially with health care workers. Soon after she left China, 50,000 donors had signed up. But back in Albuquerque, Kailee continued to live on the razor’s edge. To add to her apprehension and sorrow, her beloved cat Rosie was killed by a neighbour’s dog. Kailee was heartbroken. Linda and Owen had Rosie cremated and brought her ashes home. Kailee said little, but the incident soaked subtly into her mind. As the year wore on, Linda wondered if another trip to China would do any good. Dr Margolis encouraged her to go. “Hunting a donor for Kailee is like looking for a needle in a haystack,” he said, “but if you have any chance of finding the needle, the haystack is in China.” Linda returned to China in November 2003, but not long after she arrived, Kailee took a turn for the worse, and Linda cut short her trip. The situation forced her and Owen to make a crucial decision. For Kailee and for their marriage, they would all move permanently to Milwaukee. As 2003 drew to a close, they unloaded their belongings into an apartment on the top floor of an old house near Children’s Hospital. The accommodations were a lot less lavish than that long-abandoned, beautiful home on the mountain, but here Kailee could be close to Dr Margolis. One February day, after they had settled in, Linda and Owen were driving Kailee home from hospital when they passed a graveyard. “What’s that place?” she asked. They told her it was a cemetery, where bodies were buried. Kailee asked if she could visit it sometime so she would know more about what it would be like to be there. “Let’s wait until the weather is warmer, Sweetie,” Owen said. Intelligent beyond her years, Kailee had always been eavesdropping on her parents’ conversations with doctors. Often at the hospital, she would get very quiet, pretending to be absorbed in a picture book or a TV show, but she was listening, trying to understand what was happening to her. The once outgoing child had become more serious and inward. After the drive past the cemetery, she confided to Linda. “Mummy, I want to be cremated so you can bring me home like Rosie.” Finally, with the family’s agreement, Margolis decided to risk a blood stem cell transplant. A 52-year-old Chinese-American woman on the west coast had been identified as a possible donor. She had seven out of the ten vital factors that matched Kailee’s. It was less than perfect, but possible. Dr Margolis supervised the transplant that took place on January 25, 2005, at Children’s Hospital. Isolated and medicated to prevent an adverse reaction, Kailee remained in the hospital nearly a month. But in the end, her body rejected the woman’s cells. It was now apparent that only a near perfect match could save Kailee. Although Linda’s second trip to China was aborted, donor registration drives continued across the vast nation. In 2004 Wang Lin, a young doctor of traditional Chinese medicine at the Fuyang People’s Hospital in the eastern province of Zhejiang, volunteered as a result of a drive in his local hospital. He and a group of friends went to a temporary clinic in Fuyang’s financial district to give blood samples. As a government health worker, Wang felt it was the right thing to do. In September the following year, Wang was on a train to visit his wife, who worked in another city. She was nine months pregnant, and he was anxious to see her. As the train rattled along, his mobile phone rang. To his surprise, it was an official from the Red Cross Society of China. The official told him that he was a perfect match for a dying Chinese girl in America. “Would you be willing to donate your cells to save this child?” Wang hesitated only a moment before agreeing. “I understood what it meant to register,” he replied, “and I understand the consequences now.” When he saw his wife, Wang laid out the details of the procedure for her. She told him flatly she didn’t want him to go through with it. She was afraid it might cause him to have a stroke like his father. “It’s safe,” Wang assured her. “I’m a doctor. How can I refuse?” It took several weeks for arrangements to be made on both sides of the Pacific, and for Kailee to be prepared to tolerate the transplant at Children’s Hospital of Wisconsin. Wang himself needed to prepare. Two days before the extraction, doctors at Beijing’s Dapei Hospital injected him with drugs that forced blood stem cells out of his bone marrow into his bloodstream for collection. On October 16, 2005, Wang, dressed in a short-sleeved hospital gown, lay back on the partially elevated bed. A doctor inserted a needle attached to a catheter line in Wang’s right arm and another in his left. The lines ran into and out of a blood filtering machine: Wang’s blood would pass through the device, blood stem cells would be extracted, and the blood would be recirculated into his body. Since blood stem cells are so rare – only about one in 10,000 cells – the process took four hours. Wang had to undergo the procedure again the following day. On October 18, while he was recovering, Wang received news that his wife had gone into labour. He caught a taxi to the airport and made it to her hospital at 6.30 pm. Once at his wife’s bedside, he discovered that she and the child were in distress. He was shunted aside by nurses, who wheeled his wife into an operating room for a caesarean section. What if he had saved one child, only to lose his own? At that moment, his stem cells were in a temperature-controlled container, on their way to Children’s Hospital in Milwaukee. For days, Kailee had been receiving prednisone and other drugs so her body’s defence mechanisms would not attack and kill Wang’s stem cells. To be sure, Dr Margolis gave her one dose of radiation as well. The transplant, which Margolis calls “the ultimate glorious transfusion,” took place on November 7, 2005. All the drugs, treatments and transfusions, all the experiments and donor drives had come down to a 30- to 60-minute transfer of blood stem cells from a young doctor in China to a little girl in America – two people who had never met, yet shared some genetic familiarity. The initial signs were good. Then something went wrong – all Kailee’s blood counts decreased. The procedure was not a total loss, however; Kailee had not rejected Wang’s cells. They could try to transfuse her again. But would Wang consent to undergo another extraction? His answer was yes. Wang went back to Beijing in February 2006 for a second extraction. In Milwaukee, Kailee was again transfused. This time, Wang’s healthy cells entered her bone marrow and took firmer hold. After more than four years of suffering, Kailee began to produce sufficient blood cells on her own. One hundred days after the second transplant, Kailee was allowed to see other kids. Have play dates. Romp, dress up and play American Girl dolls with friends. Her loneliness was ending. In December 2007, Kailee, now ten years old, was strong enough to travel to Beijing, where the Red Cross held a special celebration that brought her together with the man who had given her a gift from his own body. When the master of ceremonies called Kailee and her parents forward to meet Dr Wang, the audience erupted in applause. Suddenly Kailee felt herself swept up in a pair of strong arms. Wang, his eyes streaming with tears, held her fast. He was the father of a healthy one-year-old son, and now in his arms was the girl he considered his second child. His blood, after all, flowed in her veins. Kailee hugged him back, and she had a gift for him – a picture frame on which she had written this inscription: “You are my hero. I will love you forever.” I T’S F ISH D AY, July 19, 2008, in Port Washington, Wisconsin, a small village on Lake Michigan, where the Wells family now makes their home. Locals have turned out to eat fish and chips and drink beer under tents run by civic groups. Kailee is eleven years old with the gangly grace of a pre-adolescent. She plays soccer with Tillie, her dog, and occasionally beats her mum and dad at chess. She writes poetry too. The verses are often dark and reflective as what she has endured runs through a more mature intellect. Trips to Dr Margolis have dwindled to checkups once every three months. Kailee spots a ride called The Swings. “Let’s do it,” she tells a friend who has come along. Kailee runs to a bucket seat swaying loosely on long chains. She dangles her long legs and rocks back and forth. Suddenly the motor starts. Two revolutions and the riders are screaming. The ride picks up speed, and Kailee is laughing and shouting with delight. She throws her arms wide to embrace the world and flies. Source: http://www.rdasia.com/article/1373%26pageno=3