Life and Death Bet
Issue 1138
Patient's family is in the hospital ward. Photo source: China Youth Daily
When the needle is pierced into the skin, the first drop of stem cells is injected into the body, and the bet for patients with leukemia begins.
bet is a life: the super-large dose of chemotherapy has killed all the abnormal hematopoietic stem cells, and tore the immune system apart. The long rejection welcomes the proliferation of new cells. Lips are ulcerated; molting, bloody and bloody in severe cases; chest tightness and breathing, and even suffocation; bones are sore and painful day and night... .
similar bets are performed every day at Lu Daopei Hospital in Yanjiao . In this private hematologic hospital, nearly 80% of leukemia patients are difficult and critical patients that are no longer accepted by public hospitals. The
gambling will last for 5 years. Thousands of people are distributed in hospitals and nearby communities, maintaining a small circle.
According to data from the National Health Commission, 45,000 childhood leukemia are currently being treated in China every year, with a cure rate of more than 80%. However, factors such as family poverty and inadequate diagnosis and treatment at the grassroots level hinder the actual efficacy. Once it relapses, it is even more difficult. leukemia expert and academician of the Chinese Academy of Engineering, Chen Saijuan, , revealed that in leukemia, the cure rate of leukemia has reached 80%, but the 5-year survival rate of the myeloid system is still less than 30%.
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Henan Ren Jinghang came to Yanjiao, 30 kilometers away from downtown Beijing in February this year. His son suffered from leukemia in 2017 and was treated in a large hospital in Shanghai for one year. A year later, the condition relapsed. The attending doctor who has been called "grandfather" by his child sighed and said that according to his duties, he should persuade him to continue the treatment, but emotionally, in the last few months, he should take the child out for a walk and don't suffer.
Several major hospitals no longer collect Jing Hang’s children. Only Lu Daopei Hospital in Yanjiao accepts it, but the treatment cost is 800,000 yuan.
Jing Hang drives a truck and has owed more than 100,000 yuan in Shanghai. The child’s grandfather said, I have never seen 800,000 yuan in my life, let’s take it back. At night, the child fell asleep, and Jing Hang and his wife sat by the bed sobbing. The wife suddenly looked up and said, "Let's jump off the building!"
The next day, the 7-year-old child asked Jing Hang, Dad, when will we go to the hospital again? Didn't you go once a week?
"Exchange money with your face, exchange money for life." Jing Hang went back to his hometown to invite relatives and friends to dinner, and knelt down and asked for money halfway through. The old father-in-law's family saved a total of 2,200 yuan, and took out 2,000 yuan; the uncle with cerebral infarction was a five-guarantee household and could hardly take care of himself, so his net worth was only 5,000 yuan, and he gave it all to Jing Hang, and he took it. Before the Spring Festival this year, he raised more than 70,000 yuan.
year is approaching, and he drove the company's van, his wife and children sleeping in the cargo box, and rushed from Henan to Yanjiao. It was foggy that day and the expressway was closed. The doctor at Lu Daopei Hospital warned that they would not dare to take the child's illness any longer, and Jing Hang could not park in the service area. The mineral water in the carriage was frozen and his legs were numb. He could hardly see the road, and he cried while driving.
In Yanjiao, he opened an online fundraising, used various loan apps, and borrowed usury loans, and sent his child to the transplant warehouse. It was one month later than the best date planned by the doctor, but the child was lucky. Some children had no worries after transplanting their faces, throats, pancreatitis, and cystitis.
What makes Jing Hang desperate is money. The phone is filled with pop-up windows reminding you to repay. The child's white blood cells only returned to one-third of the standard value. Because there was no money, the child was lifted out of the transplant warehouse in mid-April. After leaving the warehouse, it costs four or five thousand yuan to take medicine every day. The attending doctor racked his brains to control the dosage and replaced imported medicine with domestic medicine, saving more than 2,000 yuan a day.
"It's very painful for the child to use medicine like this." Jing Hang said. The child told him before that as long as he could accompany his parents, he would be willing to suffer 100 times.
Rejection after several months of transplant surgery will be a fatal level. It will cost hundreds of thousands of yuan to survive this level. Jing Hang still doesn't know where the money comes from. He prays for miracles to happen to the child.
Jiang Junsheng and his son Cheng Mengchao/photo source: China Youth Daily
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Lu Daopei Hospital is full of families looking for hope in despair like Jing Hang. For example, Chen Qiuxiang, who is from Hunan , Chenzhou , has a son of 14 years old and has undergone chemotherapy for a year and a half, and relapsed last year.When she came to Lu Daopei Hospital, she sold her house, raised money many times, and owed more than 100,000 yuan. My son occasionally yelled that it was too expensive and he would be out of treatment when he went back.
When she was diagnosed with the disease, the family had only 100,000 yuan in savings. Her husband didn't say anything about the child's condition. Chen Qiuxiang smashed him with an apple. Her husband wanted to fight back. She raised the fruit knife in her hand and said she would stab him to death first and then commit suicide. Now the child needs to be transplanted at Ludaope Hospital, and the guaranteed deposit of 250,000 yuan is still 70,000 to 80,000 yuan. Once rejection occurs, it may be a bottomless pit. The couple no longer quarreled.
Chen Qiuxiang would smile rarely when she said this, and said that she couldn't see the road ahead clearly, so she simply didn't think about it. She said that no one is sure about the families here, "It's all betting." It's not difficult to tell which family is really poor among the patients. Sometimes when you see the donor eating and drinking in a restaurant, other patients will spat disdainfully. Most families have been here for several months and years, except for the patients, and have never bought new clothes. There are also parents who stew fish for sick children every day, and cook vegetables and leaves with pig skin every month to taste some meat flavor.
Jiang Junsheng's family lives in an apartment with a monthly rent of 600 yuan, with medicines and bedding piles everywhere. The apartment is in the urban village, almost the cheapest accommodation in Yanjiao. The child was afraid of infection, so his wife protected the child against the wall at night, and he slept on the outer edge of the bed. Their children were also recommended to transplant, but their family was really poor and could only be treated conservatively. Jiang Junsheng said that my child is very special and may not need a transplant.
Another special kind of family is that it has not recovered after spending millions of dollars. Northeast working man Bai Yang spent nearly 2 million yuan on his child's illness in the past three years. He only had 150,000 yuan in savings, borrowed 300,000 yuan, and reimbursed 250,000 yuan. He spent the other 1 million yuan miraculously again and again with fundraising. He said that if he had known that he would have spent so much money three years ago, he might have lost his courage. What I dare not imagine is that his son has not recovered yet. Now, he can't raise money to overcome the next hurdle.
Li Yunxia, who has worked in Lu Daopei Hospital for 15 years and is now the head nurse, said that many patients' families have brought 20,000 to 30,000 yuan to Yanjiao, and she admires their courage. A parent said that not spending money to cure his illness is equivalent to killing his child. If you close your eyes in this life, you will be a child and you will not be able to live.
Li Yunxia has seen too many cases with a pleasurable situation, because she really had no money and delayed treatment, and finally she lost her people. Some people gave up for several months, but were reluctant to ask if there was any help. The answers are often hopeless.
Patients will seek help from the outside world when their families are helpless. Jing Hang, Chen Qiuxiang, Bai Yang, and Jiang Junsheng all found locals named Han Huifeng.
Han Huifeng is 60 years old this year and loves drinking, smoking and eating meat. His violent temper is famous in the local area, but he goes to an office of more than ten square meters to "work". In 2018, hundreds of patients' families walked into this room with a smoky smell and asked "Brother Han" to help find money. Someone kneels down when they enter the door, and most people will cry.
In 2015, Han Huifeng's youngest daughter, who had just turned 1, was diagnosed with leukemia. Han Huifeng claimed that he never asked for help, and felt helpless for the first time in the hospital.
to treat his daughter's illness. Han Huifeng claimed that he spent more than 2 million yuan. At that time, he was not in a good turnover and initiated online fundraising. Friends forwarded it. The donations rose and finally raised hundreds of thousands of yuan. He was moved and ashamed, after all, "it's not short of money." Han Huifeng later thought that his daughter owed others the "blessings" and he should pay it back.
Han Huifeng guides the patient's family to raise funds. Cheng Mengchao/photo. Photo source: China Youth Daily
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2015, Han Huifeng still knew nothing about leukemia. After giving my daughter a course of chemotherapy, the doctor said the effect was good, and he thought it would be fine. He never came back after being discharged from the hospital.
A few months later, the daughter relapsed. The limbs are as thin as branches, and the belly is getting bigger and bigger. I don’t eat every day, just drink water, and keep moaning, as if I’d choke to death at any time. Han Huifeng was anxious and went to the hospital to shout, "Whoever treats the doctor will kneel down." However, many hospitals refuse to accept such recurrence cases.
Han Huifeng hung up an expert number. When his daughter entered the clinic, he blocked the door and shouted loudly to the outside world that he was not allowed to enter again. He yelled at the doctor that if his daughter is not admitted, the clinic will not be opened. The doctor still refused, and Han Huifeng smashed the empty mineral water bottle on the doctor.As a result, the doctor was also anxious and said that the child was in a critical condition. I took your daughter today and might come to collect the body tomorrow. He pointed to the doctor and said, "If your daughter dies, you will definitely kill you."
Finally, the daughter was hospitalized and recovered. Han Huifeng went to apologize to the doctor. He said that at that time, "like a psychopath."
The family of the patient is suffering from mental torture, and the torture is often long. Leukemia patients have poor resistance and any infection can be fatal. Even if the treatment goes smoothly, leukemia may still recur in 1 year, 3 years, or 5 years. The patient's family seemed to be walking on a tightrope.
Lu Yang, who used to do business in Shenzhen, sent his child to the transplant warehouse in 2016. He spent 2 million yuan to use top medicines and equipment. But the child's intestinal repulsion in the warehouse is first caused by diarrhea, then hectic clots, and finally the intestinal mucosa. Even when using morphine, Lu Yang still watched through the monitoring screen. The child was so painful that he kept hitting the iron bed in the transplant chamber.
The child survived the rejection until he relapsed in 2018 and the malignant cells reappeared. The hope for the success of the second transplant is slim. Lu Yang sold his house in Shenzhen and his savings are almost exhausted.
Bai Yang’s rental house in Yanjiao, most of the rooms are messy, only his son’s room is clean, with an air purifier worth 3,700 yuan, which is the most expensive home appliance for the whole family. The house was once filled with disinfectant tablets and wiped several times a day. Just after the transplant, my son ate a dragon fruit and vomited and had diarrhea. Bai Yang called the doctor in the middle of the night, and the doctor was panicked, "If he vomits tomorrow morning, come to the hospital immediately!"
Li Yunxia had a father and son in her impression, and they were sleeping in the same room. At 6 o'clock in the morning, the 5-year-old child was hungry and went to the kitchen to slid a few cashews. The father woke up when he heard the sound and ran to the kitchen door. As soon as the cashews were swallowed, the father was so anxious that he stamped his feet and cried. Later, the child did suffer from gastroenteritis and spent 600,000 yuan to get rid of the disease.
The stories circulated among the families of some patients are even more terrifying. A boy died after the operation after eating a not-so-clean roast duck and soon died; another child went to the vegetable market without wearing a mask, and disappeared in two days.
The dishes must be less oil, and spicy onion, ginger, garlic and spicy are taboos. Chen Qiuxiang's son always says that the food is unpalatable and quarrel with the father who cooks. At 11 o'clock in the evening, the child refused to turn off his phone and went to bed. Chen Qiuxiang became anxious and said that you were seeking death. The child replied: If you die, you will die!
I really heard adults talking about someone's child, and the child is silent again, or runs to the bed and covers his head with a quilt.
The child of Jiang Junsheng is only over 1 year old and can’t speak. After taking chemotherapy medicine, he babbles every night, and the patients in the bed next door remind them to speak in a low voice. Later, the next bed also used this medicine. At night, I cried in pain, saying that it was like countless ants crawling into the flesh.
Jiang Junsheng said: "How painful is it? I won't know about this disease."
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Han Huifeng claims that he is mainly engaged in charity now - helping people raise funds on the Internet platform. In 2015, he learned how to operate himself and helped others, and gradually became famous. He is a local, and the foundation and online platforms are looking for him to set up service points.
Han Huifeng has a high school education, but he has his own tricks for fundraising. Some farmers' families are very honest and specially invited photo studios to squeeze out smiling faces with their children under the tree in the hospital. Han Huifeng cursed after seeing it, "Are you fucking in the amusement park? Don't laugh! Don't laugh!" The picture quality of
may not be clear, but it must be miserable. "In fact, the tears that could really last for Lu Daopei Hospital's family were shedding." That was really miserable. Han Huifeng frowned, "But netizens just look at the tears." He went to take photos of people and told his family that there was something on the corner of your eyes. The other party subconsciously wiped it with his hands, and he took a picture and looked like he was crying.
Most accompanying people are boring. The hospital is accompanied by bed, going home to cook, raising funds, and raising funds. Patients may have an accident at any time, and the care requirements are high, and people cannot be separated from each other, and part-time work cannot be done. But these stories cannot impress netizens. Han Huifeng did not shy away from "planning", and asked them to kneel on the side of the road, eat leftovers, pick wild vegetables on the side of the road, and go to the trash can to collect scrap in the middle of the night.
Isn’t this a scam? Han Huifeng smiled, "Liar? I'm the real one!" Most of the people who found him were honest farmers, "I shouted now, saying that I fell to death after jumping off a building and donated 500,000 yuan to his child.There is a line to line up on the roof. "
fundraising is becoming more and more difficult, and many old patients have experienced it. Lu Yang remembers that in 2015, the foundation's money was "ineffective". In the past, donations were allocated, and each time they invested 10,000 yuan, many funds and enterprises followed the investment, and soon raised 50,000 yuan. Now many patients have been digging up resources, and they have accumulated more than 200,000 yuan, most of which are only 200,000 yuan. Compared with the medical expenses of tens of millions of yuan, it is no different from the drop in the bucket.
Han Huifeng summarized that more and more people are seeking help from online channels, and their attention has been distracted; several public opinions such as the "Roer Incident" have dampened the enthusiasm of caring people. He can raise one every month Two million yuan, but it is scattered over hundreds of people, and it doesn’t cost much.
The staff of Lu Daopei Hospital said that they often receive calls from caring people to confirm whether the person seeking help is really difficult. Han Huifeng also often comes to inquire about the fact that if the family has a lot of money in the hospital account, they don’t hesitate to pay the money every time. Such a family will not help.
The better the conditions, the wider the connections and faster the fundraising, and the paradox is almost unsolvable. The bed next to Jiang Junsheng’s house is a teacher. The family is not poor, so they still initiated a fundraising target of 700,000 yuan, and raised 270,000 yuan. They felt that it was too little and said they would raise more. "I feel so envious. If I had all this money, I could save my child's life. "
" The life of a person is not equal. "After doing charity for several years, Han Huifeng felt this. He helped his children raise funds, especially young children, from time to time to time. If he is a middle-aged person, he basically only has a few thousand yuan. He feels most sorry for college students, especially famous schools, who have excellent grades and are "all pillars of the country"; and the other is the child, "I have never experienced anything after being born"; as for middle-aged and elderly patients, Han Huifeng generally refuses, "I am really busy, and I know I can't raise a lot of money." They have their own children... . "
Lu Daopei Hospital has an official cooperative fund. According to patients, it mainly fundes new cases with high cure rates. Lu Yang said that many special funds for leukemia have gradually been closed down, or they may instead fund other serious illnesses. His understanding is that public welfare institutions also need brand achievements, such as treating other cancers, and investing 200,000 yuan to 300,000 yuan, whether one person dies or lives is basically determined. However, if leukemia is poured into 1 million yuan, the patient's future is still uncertain. Also, use money to save one person and five people, and social resources are limited, "It is also a rational choice. "
Today's online fundraising platform, introducers like Han Huifeng can receive 100 to 200 yuan of labor fees from the platform for each order. Some patients' families make a living in Yanjiao, giving birth to a "donation volunteer". Han Huifeng thinks that this is reasonable, but he insists on not taking the money, "it will change the flavor and it cannot be considered a public welfare."
Until one day, he found some staff members Just open the back door, extend the time the link stays on the homepage of the platform, and half the extra money raised is the patient's family. Han Huifeng, furious, found the company leader and said that he wrote an article called "Wolf in Sheep's Clothing", intending to spread it, making the other party blush. Later, this measure was stopped. Each family can only go to the homepage of the platform once.
tens of thousands, tens of thousands, and thousands of yuan. After raising funds again and again, almost every household The patients' families are on similar trajectories. The same is true for finding relatives and friends to borrow money. Chen Qiuxiang used to do WeChat business, and there were more than 2,000 people in the circle of friends. The first time she sent messages for help, dozens of people transferred money. The second time, she sent them again, and the red exclamation marks jumped out one by one, and the screen was full of them, and her hands were shaking. More than 1,000 people have deleted her.
Some people here have been blocked by their brothers, and some people have returned to their hometown and are hiding. . Occasionally I bump into an acquaintance, and before I could speak, the other person asked first when to pay back the money. The family members who just arrived forwarded the fundraising link every day, and the circle of friends was dense. I stayed for a year or two and my circle of friends was clean.
A mother who had been in Yanjiao for many years, and there was only one picture in the circle of friends. The mother kneeled down to the child at the entrance of the hospital, and wrote a big letter: Mom is incompetent, I'm sorry.
"I won't post anymore, it's useless." ” she said.
In 2018, Ma Jun, director of the Harbin Hematologic Cancer Research Institute, said in an interview with Interface News that 80% of childhood leukemia can be cured, which does not mean that 80% of leukemia children in my country can be cured. He said that he has contacted 18,000 leukemia patients in the past 40 years, and only 1,500 have been cured, a proportion of less than 10%. This is not a lack of technology. Most patients give up treatment due to poverty and die.
On April 13th, Hunan woman Ouyang Chun'e came to find Han Huifeng. They have known each other for a long time. Her son studied automation in college and won national awards. He had a leukemia attack in his junior year and owed 600,000 yuan. The treatment was also declared a failure due to the recurrence and basically gave up. Now, they rent houses near the hospital, and their children read the pharmacopoeia and search the Internet, and take Chinese medicine by themselves. But she couldn't even pay the rent of 1,500 yuan a month.
Han Huifeng has his last move. He knows some "promotion companies" who have donated resources from enterprises or online promoters, spreading fundraising links, usually paying 23,000 yuan and certification materials, returning 30,000 yuan in half a month, or paying 15,000 yuan to return 18,000 yuan.
But some families, like Ouyang Chun'e's family, have no "highlights" in the situation and are reluctant to do it.
Little patient who was having lunch break in the hospital ward. Photo source: China Youth Daily
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Han Huifeng often calls on the patient's family to have dinner. People are crying, so he persuades them to drink to relax. But he gradually discovered that these people had drunk at noon, woke up in the afternoon, and sighed again.
Lao Han himself can't be happy sometimes. He likes to recognize his godson, and Ouyang Chun'e's children are one of them. When he recovered, the child said to him, "Dad, I want to repay you." Old Han was overjoyed and said that as long as he recovered from his illness, he would marry his daughter to him. Later, the young man relapsed, his skin fell out, his mouth was rotten, his nose was bleeding, and he collapsed on the bed. Han Huifeng went to take photos of the fundraising again, and he turned his head to the wall and didn't want to show his face.
A banner was hung directly behind Han Huifeng's office seat, which was given to him by his godson's family last year. The child was only 6 years old and looked well recovered. I went to the hospital for a follow-up examination. Before I left, I hugged Han Huifeng. As a result, I said I would be hospitalized for two days of fluid and had an injection. I died not long after.
"Sometimes I raise funds for people, and I have to make up my handprints every two days, go find them, and say that the person is gone."
A family member said that the doctor is basically honest and will tell you how confident you are in the disease and how much it will cost. If the financial conditions are not good, it will imply not to take it.
The ward of Lu Daopei Hospital is usually quiet, and there is a reminder in the elevator - please do not discuss the condition. A staff member of Lu Daopei Hospital said that seeing this step of illness was like a soldier forced to a desperate situation by pursuing soldiers to jump off a cliff, three hung on the branches, and survived; the other two died. It is necessary to explain clearly to the patient's family.
Lu Yang's child also relapsed. The doctor encouraged him to say that the subtype of children of the same period were still alive. When Lu Yang heard this, he couldn't be happy, but he just felt unprecedented loneliness.
There are always cruel scenes in the hospital. A patient's family saw with their own eyes that a child was still in acute rejection period and was indeed out of money and had to be discharged from the hospital. Finally, the tens of thousands of yuan he used an ambulance to take back his hometown in the south, all of which were collected by the patients in Yanjiao.
There was once a doctor from Lu Daopei Hospital. He received a call from the patient's family in the early morning of the first day of the Lunar New Year. The family's children have been gone in the past year. The other party said that he wanted to talk to the doctor, and he remembered his child. The doctor held up his cell phone and chatted with him for an hour.
There are also departments that waived 200,000 to 30,000 yuan for patients who owed more than 200,000 yuan. But the patient's family couldn't even pay the medical expenses in the end, so the lawyer still had to come forward.
At present, leukemia has been included in the critical illness insurance scope by the state, and the reimbursement ratio is stipulated to be around 70%. But for this group of families who have been wandering in the hospital for a long time, the longer the course of the disease, the more complicated the condition, the more difficult it is to cover the actual expenses. Many patients' families found that the actual reimbursement policy may be different in each province, each city or even the next county - wealthy areas are often better, while relatively backward provinces and cities are "stretched".
Ma Jun once told Interface News that in the three northeastern provinces, the actual reimbursement rate for childhood leukemia in urban and rural areas is only 30% to 50%; some superiors set a reimbursement rate of 70%, but the county and districts cannot continue to implement it and claim to have no money. Another hematologist revealed that leukemia in some areas only reimburses chemotherapy drugs, and 80% of non-chemotherapy drugs and imported drugs for the treatment of drugs are still at their own expense.
Head nurse Li Yunxia often forwards rehabilitation cases to the patient group. Some patients who have returned for re-examination in 5 or 10 years also invite new patients to communicate. She said that she not only gave the patient confidence, but also cheered herself up.
Li Yunxia was once pulled on the collar by a patient, and the patient who had been given medicine was mentally unstable and kicked the nurse away with one kick. What made her even more sad was that the patient who had been together for half a year or a year was gone, just like a friend left, and the patient's family became indifferent. "The mood is influenced by the situation in the ward. If the patient recovers well, he will be in a good mood. When there are more people leaving for a while, he will ask himself, why am I working hard for?"
A patient was infected or rejected. Li Yunxia couldn't help but wonder if he didn't do anything well and what was wrong with the family. An employee in the hospital said that in the past few years of work, he had to listen to the crosstalk of Guo Degang at night, otherwise he would not be able to sleep.
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A major case occurred in Lu Daopei Hospital at the end of 2017. A man named Liu Jian swept away tens of millions of yuan in more than 100 families with leukemia in the name of "match donation".
This person has been engaged in charity in Yanjiao for a long time, and many victims are introduced by patients or doctors. Afterwards, Lu Daopei Hospital issued a statement saying that it would continue to treat the deceived patients.
"There are good people and beasts in this place," said Han Huifeng.
4 In April, Bai Yang received a call from a familiar Wuhan patient. He was a young man who graduated from university and had not been working for a long time. The other side of the phone cried and said that he had finished the transplant and it went smoothly. But my wife disappeared with the reimbursement. That was his only money left. Now he started to repel lungs and breathe more and more difficult day by day. He didn't dare to tell his parents that he might be dying.
Many people do not understand the dilemma of leukemia families. Chen Qiuxiang’s son’s teacher has repeatedly raised donations in the class group organization. Later, a parent commented in the group: If you have the ability, you don’t make money well, and you can only ask for help when you encounter difficulties. Can it be done once or twice, and can it be done three or four times?
"How can she understand us?" Chen Qiuxiang is still so aggrieved that she wants to cry when she looks at this message.
For 15 years in the hospital, Li Yunxia has met all kinds of people: a younger brother is sick, and the elder brother is like a father, who pays medical expenses, donates bone marrow, and raises his nephew; there is also a family of brothers and sisters who donates bone marrow to their brothers, but they actually ask for hundreds of thousands of yuan in nutritional expenses.
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Many patients' families said that the closest people are the patients nowadays. "People in the same disaster are easier to understand." Bai Yang first took his child to see a doctor in Tianjin. He had to raise funds if he was not effective. Patients on both floors stuffed money into his pockets. Lu Yang's child was just diagnosed, and the couple were confused and stood in the hospital corridor crying. The families of the three patients immediately came around and told them not to be afraid, and then they had a popular science. Lu Yang was not so panicked after hearing this. Later, when he met someone who was out of the hospital and was in a state of dismay, he also took the initiative to greet him.
At Ludaope Hospital, old patients send rice, flour, grain and oil to new patients, and give them a place to sleep and cook. Even some family members have plenty of precious medicines that others urgently need, and they share them. People named the patient group and fellow villagers group "Happy Group 1" and "Happy Group 2".
Li Yunxia took the lead in forming 6 patient groups, mainly sharing nursing experience. But what she is most proud of is the small patient recovery group. Most of these children are rebellious in the hospital, venting anger with their parents, asking all day long when they can go home, and playing with their mobile phones in silence. The group of young patients is another: they talk about anime, celebrities, food, make games, sing, and have a group of more than 400 people, and they browse thousands of messages a day. Every time at 11 o'clock in the evening, Li Yunxia came out to host: I'm going to bed, no play anymore!
Several older children have been transplanted for three or four years, and have recovered relatively well, becoming basketball coaches for these children. There are also public welfare organizations that set up learning classrooms for this group of children.
One year, two years or even longer, many families live around the hospital for a long time. Some families no longer return home after they recover or disappear, and stay in Yanjiao to work or do charity.
A woman once asked a man that we haven't been home for several years. The man replied: The house at home has also been sold and he owes a lot of debts. Where can we still have a home?
If you accompany your child to see a doctor for a long time, it is inevitable that you will be disconnected from society. Lu Yang used to do LCD screen business and came to the north with his child. The business partner asked again, and he had no goods at hand, and no one called him again after a few times. My friends in the past didn’t know much about leukemia and tried to chat, but they always asked questions that annoyed him. He didn’t want to chat anymore, and his friendship gradually faded.
Some business families, who were told by their partners that they had leukemia, simply refused to pay back their debts. "People think that your family has collapsed and will not interact again. It's so realistic."
Many families stranded in Yanjiao have similar reasons: outsiders do not understand their own pain. Chen Qiuxiang took the child back to her hometown. People on the street stared at his naked head. The child asked: Mom, am I like a monster? He wanted to play with his past friends, but his parents refused: Be careful, he will be infected!
"We are all waiting for a result, but we dare not think about what the result is." Jing Hang's child started to get sick at the age of 5 and has not read a book yet. There are also children who have dropped out of school for four or five years. Due to chemotherapy, these children may not be able to have children when they grow up and are short in height. Jing Hang said that children's studies and marriage are long-standing luxury. If they can live safely for 20 more years, see the world and accompany their parents, he will be content.
Ouyang Chun'e's child has now given up treatment for 8 months, and has endured the doctor's assertion, and there are signs of improvement after rejection. Their family has no money to go to the hospital, so their children go online by themselves, prepare medicines, check recipes, and use beef, fish and protein powder to fight malnutrition. He uninstalled all social software and locked himself in the bedroom, but told Ouyang Chun'e that his roommates were in love and working. He wanted to commit suicide, but was unwilling to accept it.
Before chemotherapy for children in Jiang Junsheng, the association was called "Mom and Dad". After taking the medicine, I lost my language ability. He was once worried that his child's intelligence would be affected. Later I thought it out and felt it didn't matter. He only hopes that the child can grow up and be sensible.
"Otherwise he might have thought that life should be so painful until he died." Jiang Junsheng said.
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Most medical families will reach the end of Ludaopei Hospital. Some of them recovered. There are many cases in the hospital that have been recovering for more than 10 years. They became soldiers, policemen, engineers, and international students. The "big examination" in the fifth year after the transplant is the threshold for "clinical cure". Many people have survived this level and hugged the attending doctor's neck and turned around.
Han Huifeng's youngest daughter looks no different from a normal child. She recovered well and was extra strong because she liked to eat meat. The girl still had a metal catheter for chemotherapy medication on her chest. If everything went well, she would be removed one year before school.
Han Huifeng said that in the past year, the total amount of donations, spending, and loans to patients is more than 400,000 yuan, exceeding the money raised that year. Many loans were not even made, but he was in a good mood. He likes to video with his daughter, let the child shout "Dad" on the other end, and show it to the patients and families here.
Most of the people who saw this scene were still lying on the beds of hospitals or rental houses, waiting for the judgment of their destiny. Some people fail, and parents who have no children often say: Be liberated, he has gone to a happy world.
Han Huifeng once saw 8 patients away in one day. The reactions of most families are surprisingly similar, which is a kind of fatigue and numbness that is defeated after a long tug of war. The couple stood foolishly guarding the child's coffin, as if they had been drained. Someone muttered, "It's over, it's over." Someone was sitting there. When he heard Han Huifeng come in, he looked up expressionlessly, "Brother, the child is gone."
These failed families were like waves on the cliff, exploded, and then returned to silence. People have successively withdrawn from the patient group, changing the online name to "Silent as water" and "Safe for a lifetime", and rarely speak out again.Occasionally, there is a message, such as a couple who lost their son, who eventually divorced; some people stranded in Yanjiao to work, occasionally have dinner with old patients and accidentally mention the dead, and cry loudly, which is a rare outbreak.
At the turn of summer and autumn in 2018, Han Huifeng received a message from a farmer who had helped. The farmers had to send some corn.
After the child died, the farmers went home to plant the land that had been deserted for a long time. Like the summer years ago, corn ripened as scheduled.
China Youth Daily·China Youth Online Reporter Cheng Mengchao Source: China Youth Daily
