Life and death in the house of hope | 2016-06-12 |

Life and death in the house of hope

Daily Mail     12th June, 2016 02:09:36 printer

Life and death in the house of hope

A ramshackle building in the backstreets of the capital of East China's Anhui province is a home for some of China's sickest children.


Standing solitarily in the corner of an open alleyway corridor, amid empty cupboards and discarded mineral water bottles, is a children's tricycle. The electric-blue bike added a heart-lifting jolt of colour to a place otherwise shrouded in drabness.

While the wheels had clearly been collecting dust for a long time, a small wooden plank where the seat once was, fastened by plastic string indicated that bike was still in active use.


"Every child I know that has lived on this floor has ridden on this bike at one time or another," Li Defang said. "Chemotherapy gave them feeble legs, so they had no choice but to ride around on this little dirty bike that always seems to be about to crumble within the next minute."


The children all have the same illness-leukemia. About 2 million children in China have the disease, and the number is estimated to be rising by 20,000 cases a year, according to a recent report by China Newsweek.


For many families in Anhui province, Wujianong, or Wujia Lane, in Hefei, the capital of the eastern province, is an unofficial refuge. Some of the children have lived there for so long that it has almost become their second home.


Yet for both residents and visitors-adventurers really, because the place feels like a colony-the name is a little misleading because rather than a single lane, the area is composed of a handful of backstreets, lined by old-style two or three-storey courtyards. Tucked inside are dark little rooms-the structure allows little light in-resembling honeycombs in a giant beehive. These days, almost all the rooms have been rented out to migrant-worker families and families with a child with leukemia, the overwhelming majority come from the province.


Zhao Jing, Li's 4-year-old granddaughter, is one of them. "We came here in September 2014, not long after the diagnosis. We chose to live here because it's just a few steps away from the Anhui Provincial Children's Hospital, where my granddaughter had chemotherapy. But most important, it's cheap here," Li said. An 8-square-metre room costs about 350 yuan ($54) a month, compared with two-bedroom apartments in the vicinity that cost 1,500 yuan ($230).


The fact that this messy and dilapidated corner 15 minutes' drive from the city center has, so far, escaped demolition is a miracle in itself. A miracle is what every family living here with a sick child is hoping for.


"But there will be no miracle without money," Li said.


Tough decisions

Li Guoping knows all about that. Having spent two and half years in Wujianong, he has seen many deaths-and the pain leading up to them. He is determined that his grandson, Li Ao, will not suffer in the same way.


Last year, the 10-year-old had a stem cell transplant. So far, apart from one post-transplant infection, he is on the road to recovery, but things have been tough for the family.


"We were running out of money while Li Ao was staying in the transplant room. I've no idea how he got to know about that, but one day, when my wife went to see the boy, he told her, 'Please don't waste money on me any more'," Li Guoping recalled. "A few days after that, he tired to drink a bottle of disinfectant while his nurse was away for a few minutes."


Luckily, Li Ao was quickly discovered and no serious damage resulted, but what he will probably never know is that at the same time he was trying to end his young life, his grandmother and his mother, who had given birth to a baby girl barely seven months before, were begging for money in a nearby street.


"The girl was born to provide blood from the umbilical cord for a much-needed transplant. But it didn't match. That was before the doctors found suitable cord blood in the public blood bank," said Li Guoping, who estimated that his grandson's treatment has cost 1 million yuan since he was diagnosed.


"Half of that amount has to come from our own pockets," he said. The 500,000 yuan they owe is enough to break any rural family with a monthly income of less than 7,000 yuan. In despair, he has turned to loan sharks, who have no idea what the family is experiencing, in his hometown in Yingshang county, and he has also withdrawn large amounts of cash via a credit card, which is illegal in China.


The rest of the money has been paid by the Yingshang County Government, as part of the New Rural Cooperative Medical Scheme, a complex county-based medical insurance plan solely for rural residents, who have no access to the same form of insurance enjoyed by their urban counterparts.


"The scheme has a special arrangement known as Single Disease Pay, designed especially for rural patients with illnesses deemed severe and costly. Leukemia is on the list," Li Guoping said. "Under this arrangement, children younger than 14 with leukemia are entitled to up to 30,000 yuan for chemotherapy and up to 360,000 yuan for a stem cell transplant. Anything above that upper limit then goes to the common insurance scheme, which pays about 50 percent of the cost."


Xu Zhe, the attending physician in the hematology department of the Anhui Provincial Children's Hospital, has been treating Li Ao ever since his arrival at Wujianong, although the stem cell transplant was carried out at the Anhui Provincial Hospital.


"Typically, chemotherapy is recommended for children with low-to average-risk leukemia. The cost ranges between 50,000 yuan and 100,000 yuan," Xu said. "A stem cell transplant is often necessary for high-risk leukemia patients. And the cost, which varies greatly from patient to patient, usually starts at about 200,000 yuan."


Lack of funding

Xu said that the current medical scheme has proved insufficient to keep families afloat mainly because it fails to take many "unpredictable factors" into account.


"Unpredictable and predictable-that's how I describe the many infections endured by my young post-chemo patients," he said. "Hefei is a rainy city. The damp, squalid environment in which they are living only multiplies the problem."


Because the process destroys malignant cells as well as healthy ones, virtually all types of chemotherapy can cause depression of the immune system, accompanied by a drastic reduction in the number of both red and white blood cells and platelets. This makes infection practically inevitable.


"I've never had one child patient who didn't suffer post-chemo infection," Xu said. "And once infection occurs, the anti-bacterial, anti-fungal and anti-viral drugs can easily cost several thousand yuan. It's not uncommon to spend between 10,000 yuan and 30,000 yuan to fight one infection. I know one child whose infection was so severe and complicated that it cost close to 80,000 yuan to overcome."


Sometimes, infection occurs in the middle of a course of chemotherapy, so the treatment has to be suspended and cannot be resumed until the patient has recovered completely.


However, under the New Rural Cooperative Medical Scheme, the 30,000 yuan upper limit for chemotherapy is only applicable for the child's first uninterrupted treatment, so resumption of treatment is not covered.


The picture for children undergoing stem cell transplants is not necessarily better.


"Among all the leukemia children in Wujianong, Li Ao's treatment has cost the most," Li Guoping said.


The boy stayed in the transplant ward for 90 days between June and September.


"It normally takes about a month for the transplanted cells to engraft, or take, after which they begin to multiply and make new blood cells," he said. "But my boy rejected very violently. He also suffered serious gastrointestinal problems that caused him to defecate a couple of dozen times a day and there was blood in his feces."


The 54-year-old remembers the boy's strange smell the day he left the "cabin", as the transplant ward is known.


Seeing Wu Qiaoqiao, a 9-year-old patient who lives with her mother in Wujianong, evoked many memories for Li Guoping. Having had a stem cell transplant barely four months ago, the once sprightly girl has been plagued by relentless mouth sores and acute pancreatitis-both common side effects-and now weighs just 12 kilograms. Her skeletal limbs are covered by blackened skin that is expected to slough off in the next few months.


"They call it a rebirth-you shed your old self for a new one," Yu Wenhuan, Wu's mother, said. "But it's a rebirth only for those who can make the passage. We are already up to our necks in debt."


Yu, who was three months pregnant, said she was made to feel guilty by her daughter's reaction.


"A few days ago, I was lying on the bed feeling totally spent, when she walked slowly toward me and handed me her own bottle of milk, the only thing she can eat because of her illness," she said.


Wang Yupei, who works for a local NGO called The Happy Childhood Charity, believes that life and disease are inseparable for Wujianong's leukemia children. "An often-played game here is doctor-and-patient, with them acting as the doctors and us, the patient. They never forget to 'sterilize' before an injection," the 23-year-old said.


The NGO, founded in 2011 by former solider Wang Dacheng, aims to provide an environment for the sick children to mingle and have fun. Located at the entrance of the lane, the 7-square-meter room is the only place where the children appear as normal as others of the same age, except for the vividly-colored masks that hide their faces.


"Money is probably what they need the most, but trying to help in that respect is very likely to put us in an awkward situation with the families," Wang Yupei said. "Desperation has driven them to compete among themselves for benefits real or imagined. Sometimes, all it takes to create a palpable sense of tension is a good-willed outsider who has come to help."


Wang Fei, a doctor at the Hospital of the Capital Institute of Pediatrics in Beijing, believes the central government and the health ministry should be more aggressive and allow more latitude in the provision of financial help for children in need.


"Many hospitals in the West are allowed to collect donations for their patients. I know there are a lot of people out there who want to donate, and ours is a channel they can trust," she said. "But sadly, as a hospital we are not legally entitled to receive the money.


"Given proper treatment, the five-year survival rate for children with leukemia, especially acute lymphoblastic leukemia, the most common type among children, could reach 70 percent," the 44-year-old continued.


"The government needs to greatly raise the level of medical insurance if the flame of hope is to burn continually for these families."


Every morning, Li Defang wakes at about 4 am and immediately goes out, leaving Zhao Jing, her granddaughter, sleeping in bed. "I collect a few plastic bottles, some newspapers and old cardboard-stuff that I can sell for a few yuan, if I'm lucky," the 54-year-old said.


"My only worry is that she might kick away the quilt when she's sleeping and I'm away. She can't afford another infection."


While her grandmother was talking, Zhao Jing was fumbling with the old tricycle. "Do you want a new one?" a neighbour asked her.


The little girl's voice was muffled by her face mask, but her eyes were big and clear. She looked intently at the man for a moment. "No, no, no new bike," she replied. "I want money. I want medicine."