Source of this article: Times Finance Author: Chen Jiahui
She has a clarity that is commensurate with pain, a tenacity that balances with despair. --René Charles
Xue Tong often dreams, in the dream of himself can lose his crutches, can run and jump, "the dream is very good, where you want to go."
Not counting the time of bed rest, Xue Tong has been in a wheelchair for three years and has been on crutches for four years. She didn't like or accept the look of her crutches, hunchbacked, bulky, and ugly. Not like others, walking is so easy.
Xue Tong, 23, grew up with his parents in Handan City, Hebei Province, just a two-hour drive from Anyang City, Henan Province, where he was registered. Eight years ago, a fracture changed her fate, when she was preparing to take the entrance examination.
In the past eight years, Xue Tong underwent two bone graft surgeries, and the broken bone was continuously connected and dissolved. On February 4 this year, Xue Tong took a film review, and the right femur once again "disappeared", leaving only a steel plate, "just like the bone was eaten by something" .
But the reason for the "disappearance" has not been known.
After seeking medical treatment without success, until he heard that Shen Jingnan, a professor of the Department of Orthopedic Oncology at the First Affiliated Hospital of Sun Yat-sen University in Guangzhou, might be able to be treated, on February 23, with the support of a well-wisher in Guangzhou, with uneasiness about the unknown, Xue Tong and his father boarded a plane to Guangzhou.
"Nervous, scared, as soon as I met the professor, I didn't dare to listen to what the professor said, for fear of hearing bad news." On the morning of February 25, Xue Tong, who was waiting for treatment, was nervous. After 20 minutes of consultation, "Professor Shen said that the symptoms are very similar to large pieces of osteolysis, you can use the drug first to see if there is an effect, if it is effective, then consider changing the false bone."
Although it has not yet been diagnosed with large osteolysis, for Xue Tong, she hopes that this disease, replaced by a false bone, she may be able to stand up and continue walking.
Xue Tong's father and daughter who went to Guangzhou to seek medical treatment, photographed by Times Finance
Mass osteolysis, also known as Gorham-Stout syndrome, acute spontaneous bone resorption, shadow bone, etc., is not well known for its etiology and pathogenesis. A literature titled "Current Concepts of Gorham-Stout Syndrome from Diagnosis to Treatment: A Systematic Review of About 350 Cases" shows that as of 2020, only about 350 GSDs have been reported worldwide.
The last day of February is World Rare Disease Day, where more than 7,000 rare diseases have been identified worldwide, but only 1% are treatable. The theme of this year's Rare Disease Day is "Share Your Colours".
light blue
Xue Tong felt that her Color was light blue, which could make people think of the ocean, the sky, and the water, and could also make her quiet.
Handan was so dry that it vowed to drain the moisture from the air like a water pump before it stopped. Xue Tong held the large kettle and sat on the wooden sofa and grunted and drank water.
Xue Tong's room was in the kitchen. There was a single bed against the wall in the room, and the rest was the aisle, and the cooking area had been reduced to the balcony of the original kitchen. The 17-year-old brother's room is part of the living room, separated from it by curtain cloths.
The 70-square-meter house rents 1200 yuan per month, which is the third time Xue Tong has moved. Grandpa, who had just finished surgery, also moved in, the home was slightly crowded, and my grandfather, who was almost 70 years old this year, had three surgeries and set up 6 heart stents.
In the small city with a per capita salary of three or four thousand, the average house price is as high as 10,000 yuan a square meter, and Xue Tong's parents dare not think about buying a house.
His parents were born in 1980, 42 years old, and silently shouldered the burden on themselves. His father, Xue Haiguo, worked odd jobs in Handan, cut scrap iron for scrap stations, and also worked as a driver, earning four or five thousand yuan a month. Mother Chen Weihong took care of her children at home, and in order to supplement the family, she converted the bedroom balcony across the street into a small shop, selling tobacco, alcohol and snacks, and the money earned could cover the rent.
The bedroom balcony was converted into a commissary, photographed by Times Finance
In order to treat Xue Tong's illness, the family has owed four or five hundred thousand yuan in debt, and relatives and friends have borrowed it all. Xue Haiguo carried a card bag with him, spread out to be a fan, all credit cards. The notebook records which credit card to return on the number of days of each month and how much to pay back.
On February 4, when reviewing the filming, Xue Haiguo saw in the machine that all the 23 centimeters of bones implanted in the last surgery had disappeared, and his heart was cold, and after the cold, his head began to sweat coldly, "No, no"!
Fear strikes, because the thigh bones are once again all "gone", where will the next step be absorbed, calf, or waist? No one knows.
Xue Tong regretted it very much, regretting why he hadn't amputated his leg 5 years ago.
In 2017, before the fourth operation in Beijing Jishuitan Hospital, the attending doctor proposed an amputation plan, Xue Tong and her family did not agree, at that time her legs were the same as now, in addition to no bones inside, nerves, blood vessels, muscles, etc. are normal, Xue Tong is reluctant to amputate the thighs, and is more afraid that after amputation, it will never be like ordinary people.
But looking at the right femur that had disappeared, Xue Tong wondered why he didn't amputate his leg. If she had been amputated, she might have learned to take care of herself, and after fitting up the prosthesis, she could go out to work and do whatever she wanted.
Xue Tong is less than 1.6 meters tall, but she weighs 126 pounds, which is not her heaviest time, the heaviest time is 140 pounds. Because the medicine she takes contains hormones, getting fat is easy for her. Most of the time, Xue Tong stayed on the bed, leaning against the edge of the bed.
Because the fall was in puberty and the body was still growing, Xue Tong's right leg was at least 5 centimeters shorter than the left leg, but both feet were the same size. In order to walk smoothly, each pair of shoes and even slippers are nailed to the right side of the shoe to thicken the sole, and sometimes need to be stuffed with a new height. Even so, Xue Tong's right foot could only barely touch the ground.
Unlike ordinary patients, Xue Tong had no pain except for the "disappearance" of bones, and other indicators of his body were normal. Fair skin, rosy complexion, clear eyes, a long fluffy hair draped over the shoulders, well-behaved and cute, as if time had left her in junior high school.
The idea of amputation exists for only a few days. On February 7, Xue Tong posted a message for help on a Weibo account called "Jingting Bai I": "I hope everyone can help!" I have a rare disease and can't find the cause of treatment", Xue Tong told his eight years of medical experience, in Beijing Jishuitan, Peking Union And other major hospitals can not be treated, "I can also be treated as a human body research."
As of press time, the weibo has been forwarded 27,000 times, and at the same time, it has also attracted the attention of the medical community and the media.
fracture
One fracture changes fate.
On Friday, March 14, 2014, there are still three months to go before the entrance examination. That afternoon, the school organized a monthly examination, Xue Tong had forgotten what subjects to take, only remembered the middle break between the two exams, she stood at the door of the classroom, several boys in the same class chased and played, Lu Xiaoyang, who was running in front, knocked her down from behind, she fell to the ground, unable to move.
Lu Xiaoyang wanted to help Xue Tong up, but he couldn't help him, so many classmates came around at this time, and they helped Xue Tong up and sat on a stool. Huge pain struck, and Xue Tong cried. The teacher who heard the noise called an ambulance, and the students all scattered to sit back to prepare for the second exam, leaving Xue Tong sitting on a stool in the doorway, her legs trembling uncontrollably, in order not to disturb the classmates' exams, she held her voice, but the tears flowed out desperately. Until 20 minutes later the ambulance arrives.
Xue Tong couldn't remember how much pain it was at that time, and when he was sent to the 285 Hospital of the People's Liberation Army in Handan for hospitalization, it was nearly 6 p.m., the doctors were off work, and they did not operate on weekends, until Monday, Xue Tong did bone grafting surgery. "Every minute and every second is torture," she said.
Xue Tong still remembered the appearance of Lu Xiaoyang, who knocked her down, single eyelids, very thin, and her face was full of acne. On the graduation photo, Lu Xiaoyang grinned, while Xue Tong, who had been looking forward to the graduation photo early, was absent from the graduation photo, and whether he was smiling or grinning when taking pictures with his friends before was empty because he was lying on the hospital bed.
At first, Lu Xiaoyang's parents did not admit that their children had bumped into Xue Tong, but after Xue Tong's operation, they still lost a little money, and the two sides signed a waiver agreement. Because everyone thought it was just an ordinary fracture.
More than a month after being discharged from the hospital, Xue Tong returned to the hospital for review, and found that the bone interface not only did not heal but there was less bone, the doctor said that he had never seen this situation, "you won the lottery", let go home for a few months and then check it again.
The bones began to "disappear" at that time, and Xue Tong, who had just turned 15, began to go to another life track.
Because of their average academic performance, Xue Tong and his good friend planned to go to a vocational school to study accounting together and experience a collective life. For Xue Tong, who is difficult to pass the math test, accounting is not the most preferred, but in order to be able to be with friends, she paid the tuition, but the results of the review made her have to give up.
The friends who used to go to and from school together and played with especially well are no longer in touch, and their lives continue to move forward and they will meet new friends. Xue Tong's life stopped, and the radius of life continued to shrink, and in the end only his family and relatives were left. "They now have their own jobs, they look like adults, and no matter what, they're going to be better than I am now," Mr. Xue said.
Xue Tong still remembered that when she did not fall, she went hiking with her mother and brother, and her mother asked her to buy a pair of shoes that fit comfortably, and she had to buy muffin shoes with a particularly thick sole, and as a result, the two of them climbed up, and Xue Tong was still down the mountain. If you know that it will be like this in the future, you must play a few more laps at that time, Xue Tong regrets going out less when he is healthy, as long as he is not staying at home, no matter where he goes. But how many places can a 14-year-old junior high school student go?
Xue Tong has a little demon in her heart, and she doesn't come out often, but when she runs around to seek medical treatment, when she is exercising and suffering, when the night is quiet, the little demon will occupy Xue Tong, "I am living so miserable now, I don't want him (Lu Xiaoyang) to have a smooth life, and I also want to make his life a little painful", and then I will feel ashamed of myself for having this thought.
Compared with complaining that he hated him, Xue Tong was more regretful, "If I hadn't stood there at that time, it would have been fine, if I had sat in my seat well, it would have been fine."
The card bag that my father carried with me, and the times finance took bone grafts
In order to make the bones no longer disappear, her mother Chen Weihong let Xue Tong bask in the sun every day. Laying a mat or putting a single bed in the corridor of the rented house, Xue Tong lay there, lying down from the sun rising until the sun set, basking for seven or eight months, his skin was dark.
Meat and bone soup is a must drink, carbonated drinks are absolutely not drinkable, even stir-fried vegetables with vinegar can be less, raw chinese medicine has also been drunk, bone-increasing plaster is also pasted. In short, all methods favorable to bone growth have been tried, and all acts against bones have been prohibited.
But these efforts proved to be in vain. Instead of healing, the attached bone is absorbed little by little from the interface, constantly extending upwards and downwards, and "disappearing.".
Bone graft surgery has become an inevitable choice, and it is also a glimmer of hope for Xue Tong.
At the end of January 2015, on the recommendation of a doctor, Xue Tong performed a bone graft operation at the 150 Hospital of the People's Liberation Army in Luoyang, Henan Province, and took the fibula of his left calf for transplantation. More than two months after the operation, due to loose screws in his right thigh, he went to the hospital again for surgical fixation.
The implanted fibula replaced the missing thigh bone, and five tightened screws fixed the steel plate to the ends of the thigh bone, but no one could guarantee that the newly implanted bone would not disappear.
Luck did not come, and the bones continued to "disappear".
Xue Tong could only look for the cause and find a cure in a larger hospital. In two years, Xue Tong and his family ran to the Third Hospital of Hebei Medical University, the Sixth People's Hospital of Shanghai, the Peking Union Hospital, the Beijing Jishuitan Hospital, the General Hospital of the Chinese People's Liberation Army, the hospitals in Zhengzhou, Anyang, Tianjin, and even the hospitals dedicated to seeing athletes, but they could not diagnose what disease Xue Tong had.
At this time, not much of the fibula implanted in 2015 has also been absorbed.
In June 2017, Xue Tong and his family, who had no way to apply for medical treatment, came to Beijing Jishuitan Hospital again to prepare for the second bone graft operation. Before the operation, a lot of examinations need to be done, and Xue Tong, accompanied by his parents, travels to and from Handan and Beijing three or four days a week.
In order to save money, the three people took a green-skinned train, took a box of instant noodles and ham sausages, and sat for five or six hours to Beijing. Xue Tong sat at the junction of the carriage, his father accompanied for a while, and his mother accompanied him for a while. She felt particularly crowded sitting in a wheelchair, "it's just that you close your eyes, there are all kinds of sounds around you, and there are all kinds of smells in the air." Xue Tong described, "There is no like, there is no dislike, but at that time you have to stay in that environment." ”
After arriving in Beijing, the situation did not improve. The three of them did various examinations in the hospital during the day, and when it was dark, they went to the small square near the hospital, found a place with fewer people, spread the mats and quilts brought from home on the ground, and slept night after night. They stayed in a hotel once, near the hospital, 270 yuan a night, too expensive.
Xue Tong's memory was blurred, she only remembered that there were pedestrians passing by at night, there were cars on the road not far away, and when she woke up in the morning, she could go to the public toilet in the square to wash her face, and the rest could not be remembered clearly. Chen Weihong remembered clearly, those nights were very hot, mosquitoes were also many, the couple took turns to catch mosquitoes for their sleeping daughter, and they were not in the mood to chat, looking at the mobile phone, but they did not know what they were thinking in their hearts, anyway, they fell asleep in the morning.
In Chen Weihong's story, there was another thing that Xue Tong didn't remember. Xue Tong sent the video of sleeping in the small square to his brother, when the brother had just graduated from primary school, the only few dollars in WeChat were transferred to his sister, "I have this little money in WeChat, all for you", in his brother's story, those few dollars are specifically one or two dollars, it is indeed his only money, and the transfer to his sister is to let her live better.
My brother is very sensible and never spends money indiscriminately. Chen Weihong felt indebted to her son, who was born with a disability in his right eye, "small eyeball, small cornea, strabismus, no vision." When Xue Tong was about to be discharged from the hospital for his second operation in Luoyang, his father went to pick them up, and it took four days to go back and forth, leaving only 40 yuan for his son when he left. When he got home, the child still had more than 20 yuan: he spent 10 yuan to buy an alarm clock to wake himself up, and bought a few dollars of steamed buns and spicy strips, and ate like this.
After two months, in August 2017, Xue Tong underwent free grafting of the fibular flap and iliac flap, that is, the fibula of the right calf and the left iliac bone were transplanted. The operation took 13 hours, was given two anesthetics, nearly 4,000 milliliters of blood were transfused, and the implanted bone was 23 centimeters long. When he came out of the operating room, Xue Tong's face was as white as a wall.
The two or three days after the operation were the most tired time for her mother, Chen Weihong. At that time, it was the hottest time in Beijing, every day to rub my daughter's body, my eyes have been staring at the infusion, sleepy, but can't sleep, two or three days can't close my eyes, things happened to myself, I can't sleep if I want to sleep. After waiting for those few days, her daughter stabilized, and Chen Weihong could fall asleep sitting on a stool.
Because the ward was full of women, his father Xue Haiguo slept outside the ward, sometimes in the corridor, sometimes in the corridor, convenient to be on call. Xue Haiguo was distressed that his daughter was suffering, but there was no way to hurt him, he did not stand in front of his daughter, he did not see that his heart was not so uncomfortable, "she can persist, better than me", Xue Haiguo said.
During xue tong's operation, it was just in time for his younger brother Xiaoshengchu. The younger brother has very good grades, the language number of English three subjects rarely to 98 points or less, but also successfully admitted to a good local private junior high school, but had to pay 18,000 yuan of fees, the family can not afford to pay, the daughter's bone graft surgery cost 1450,000, the parents decided to take care of the daughter first, let the son read a public middle school with poor wind evaluation.
The younger brother, who has always been sensible, has also become "uncomfortable" in his heart, and has not spoken much to his parents for half a year. Chen Weihong still regrets it very much, no matter how difficult it was at that time, he should also borrow the money for his children's study.
Thickened sole of the right foot, times finance photography "selfish"
Taking the 2017 Jishuitan operation as the boundary, Xue Tong's 8 years since his illness can be roughly divided into two parts, the first three years of life were filled with medical treatment in various places, and in the last five years, Xue Tong began to learn how to get along with the disease and how to get along with himself.
But Xue Tong didn't get along easily. The disability of the legs, coupled with the fat body shape, made Xue Tong become less confident, and when talking to people, his eyes began to dodge, and the small movements became more. Every day, in addition to exercising in the community, she rarely walks to the street, others look at her twice, she will immediately become sensitive, wonder why I don't look at others, want to leave this place quickly. But when I arrived at the hospital, Xue Tong became comfortable, "The hospital is full of patients, and I feel that I am no different from them."
After falling ill, Xue Tong did not go to the mall again, because the floor of the mall was too smooth and could fall. Xue Tong fell down at home once, the crutches were not stable, sat on the ground, fortunately there was nothing wrong, but it scared her not lightly. Xue Tong didn't dare to think about how much of a burden he would bring to the family if he fell again.
Chen Weihong knows that her daughter is inferior, so she lets her go out and walk around more, and does not always hide at home and does not want to see people. Xue Tong did not want to go out to contact people, she thought that she was well hidden, and thought that her mother did not know that she was inferior.
She was also afraid of walking alone on the street. She had observed people on the street, riding a bicycle was basically one person, walking was basically two people, even if it was a person walking, she might have something or go to see friends. Xue Tong has too few times to have an affair, she does not want to walk alone on the street, she longs for friends, wants to go shopping, eating, and watching movies with friends. Even if this "friend" is the sister of her aunt's family who is only 5 years old, Xue Tong will often accompany her to go out to play.
"When you're alone, you're so lonely," she said.
Xue Tong has also tried to make friends, in the online world, they should be noisy and afraid, but after telling each other about their situation, they become different, they will become cautious when speaking, and they will not be afraid, feeling that they are pitiful to themselves, Xue Tong does not like this feeling, and slowly they are estranged from each other.
Maybe being alone doesn't mean being alone. In 2018, Xue Tong met her current close friend online, five years younger than her, and in her second year of high school like her brother, Jiangsu Danyang. The two had never met, but that didn't stop them from "talking to each other." Xue Tong envied this friend in her heart, because she often went to the movies alone and ate hot pot alone, very independent. Xue Tong couldn't understand, so he asked her, "Won't you be alone?", and she said no.
Illness brought loneliness, but it did not consume Xue Tong's self-esteem. A video media in Beijing wanted to interview Xue Tong's family, and she agreed to the interview, but she did not want to show her face and did not want to expose her daily life to the public. "Whether this disease can be cured or not, I still have a long way to go in the future, this is a thing I don't want to remember, I don't want to see such a self on the news in the future." I'm particularly sad to see that. Xue Tong said.
"Let's take care of the present sister first, don't think about it later." When the film is broadcast, only you will feel bad in your heart, but this can bring about substantial changes, there may be someone to give you free surgery, there may be someone to give your brother free surgery, the family needs money, you know? Life is all about real money. You can't just think of yourself, you can't count on this one expert, you can't count on a newspaper. "The media reporter fought.
That day, Xue Tong, who almost did not cry in front of outsiders, shed a lot of tears, and she did not understand why she had become the most selfish person. But she still chose to compromise, facing herself and accepting frontal shooting, but asking for face coding.
Take a walk down the street
Xue Tong, who stayed at home, had a lot of time to pass.
The stars chased ranged from Yan Yalun to Yi Qianxi and Bai Jingting; the glory of the king played to the supreme star Yao Duan position, "eat chicken" played to the super trump card; the 76 episodes of "The Biography of Zhen Huan" brushed five or six times. In order to find excitement, Xue Tong likes to turn off the lights at night alone in the room to watch horror movies, well-known horror movies have basically been seen, netizens commented on the "Midnight Bell" and "Curse", she has no feelings, "Summoning Souls" and "Lurking" She thinks it is OK. "A lot of the films are sleepy when I look at them, and very few of them make my heart beat faster."
Xue Tong was also fascinated by fortune telling.
Because he sought medical treatment from many top hospitals in China, but still could not find the cause of the disease, Xue Tong, who did not believe in ghosts and gods, began to tell fortunes. Some fortune tellers want to go to Xue Tong's birthday eight characters, and tell her that in the previous life she had injured the leg of a crane, and she would have to pay it back in this life; there was also saying that she would burn 10,000 yuan treasures for the children around the bodhisattva, and during that time Xue Tong's family stacked yuan treasures every day; and also said that the house where she fell was next to an obstetrician and gynecologist, and there were often confinement mothers in the family, so Xue Tong's yin qi was relatively heavy.
Xue Tong replaced the phone case with a lamb pattern and bought a small sheep brooch, because fortune tellers said that it was better for her to wear a zodiac sheep.
Chen Weihong also believed that he bought a turtle from the vegetable market and released it into the pond for a year; once back in his hometown, Chen Weihong did not know where to find the godmother to give Xue Tong a method, and the godmother let Xue Tong lie on the bed, lit a thing with a fire, and smoked, and the godmother held it on Xue Tong's leg. "At that time, there was no fluctuation in my heart," Xue Tong said with a smile.
But Xue Tong's bones did not stop dissolving.
She can't see the way forward, what if it doesn't get better? Can you rely on your parents for the rest of your life? She had no answer. For several nights, she had an emotional breakdown and cried silently.
She began to plan herself, and the most she wanted to do was a pastry chef, because eating sweets can make people feel happy, making a beautiful thing by herself will be particularly fulfilling, and if others like to eat what they make, they are particularly happy.
But no one was willing to accept her as an apprentice, Xue Tong asked the dessert shop near her home on crutches, "You accept apprentices, can I do this?" The pastry chefs all rejected her, standing for too long, unable to take anything, "Wait until you are well"!
Instead of making money, Xue Tong wants to do something, or at least looks like he is doing something. A month ago, she registered a small shop on Pinduoduo, "Clips", mainly selling hair ropes, hair bands and other gadgets, through a piece of hair, earn a little difference. For example, if someone places an order for an 8 yuan hair band, she will spend 6.7 yuan to "purchase" and send one piece to the buyer, so that a single business can earn 1.3 yuan. At present, a total of 4 orders have been traded, earning 10.06 yuan.
Even 10.06 yuan made her feel that she could make money. What's more, if someone asks her what she did at home, she won't say nothing.
On the morning of February 28, the day of rare diseases, Xue Tong hung up Shen Jingnan's number, and she hoped to be diagnosed, and even more hoped to be treated.
Xue Haiguo on the Guangzhou subway, photographed by Times Finance
When she was well and didn't need crutches, she planned to lose weight first, then remove the scars, put on a long black puffy skirt, and walk well on the street.
(At the request of the interviewee, Xue Tong, Xue Haiguo, and Lu Xiaoyang are pseudonyms)