On April 26, 2011, Yue Yue's mother took him to find me for the first time. He was 8 years old and I was 31 years old.
When I first met Yue Yue, I was following Professor Li Xiaoxin to specialize in uveitis. Yue Yue was diagnosed with leukemia a year ago, underwent a cord blood stem cell transplant, and after the operation, his eyes became sick, this time because he had been unable to see anything for a month. I gave him an initial examination and found that his eyes were cloudy and he couldn't see the bottom of his eyes at all, and it was not clear what caused it, let alone treatment.
Yue Yue's family is a native of Yangquan, Shanxi, and his father is a long-distance bus driver, who leaves early and returns late, relying on his meager income to support the family's life. His mother, a farmer, has given up farm work since Yue Yue was diagnosed with leukemia and accompanied him to see a doctor full-time. The family's originally poor but happy life was completely disrupted by Yue Yue's sudden illness, and from the day he was diagnosed with leukemia, Yue Yue's parents were trapped in a constant cycle of hope and despair.
Yue Yue's mother told me that this year, their mother and son were either in the hospital or on the way to the hospital, and they spent all their savings and owed a bunch of debts. Originally, after the cord blood surgery, the family breathed a little relief, but they did not expect that nightmares would come one after another.
Yue Yue's mother was not yet 40 years old at the time, but her face was haggard, her hair was messy, her body was thin, and she looked particularly old. During the year, she experienced too much pain and shed too many tears, and she asked me in a calm tone: "Doctor, you tell me the truth, can you still be cured?" ”
I have to answer such questions many times a day, and I know what my words mean to patients. I comforted her: "I will do my best to keep your son's eyes, and you must not give up." ”
Yue Yue's mother flashed a glint of light in her eyes, and she was so excited that she thanked me directly. At that time, I had just become an associate professor and deputy chief physician, and I was full of ambitions; moreover, I chose to specialize in uveitis because I hoped to challenge some complex cases and make my work more valuable. Thinking that I might be her last hope, I secretly swore in my heart that I must cure Yue Yue!
Yue Yue was particularly well-behaved and brave, and although he couldn't see me, I could feel the power of survival in his expression. I took him into the operating room to draw intraocular fluids for a detailed examination. I asked him, "When my uncle wants to put a needle in your eye later, it will hurt a little, can you bear it?" He nodded knowingly, but held my hand tightly.
An 8-year-old child often cries after getting a vaccine, but Yue Yue did not say a word during the whole process. Looking at him, I always had an unspeakable heartache.
A month later, Yue Yue's cause was finally found, it was a non-infectious inflammation, and he regained his vision after using local hormones. Yue Yue's mother was so excited that she couldn't cry. She told me that she had cried many times this year and was used to the scene where the doctor shook his head and asked her to go back.
Although the cause has been found, but the treatment is still a complex process, uveitis is particularly stubborn, the more poor health, poor family conditions of the person, the more prone to recurrence, the eyes constantly inflamed need to continue treatment.
Since then, Yue Yue's mother has embarked on a difficult journey from Shanxi to and from Beijing. If the condition is serious and requires hospitalization, the length may be ten days and a half months, and the short period may be as short as three or five days. In addition to the medical expenses, they can save money, and Yue Yue's mother often spends the night in the hospital corridors and parks.
After Yue Yue and I got acquainted, the conversation began to increase. He is quite familiar with everything in the hospital, and when he meets new patients who have just been hospitalized, he can also play the role of a small volunteer, helping them to guide them and give them advice. The nurses at the hospital were also familiar with Yue Yue, liked him, and liked to listen to him tell stories and jokes. Sometimes he would run to the nurse's station to look at his file, see the high cost, and he would always sigh uncomfortably and say, "There is no money at home to see me." ”
Because of his illness, Yue Yue went to school two years later than other children, and only entered the first grade at the age of 9, but because of his low immunity, he could not go to school when he encountered wind and rain and seasonal changes.
It may be that God took away Yue Yue's health and gave him a brain that was different from ordinary people, or it may be that he cherished the opportunity to go to school too much, his grades were particularly good, in the case of missing most of the class for half a year, mathematics actually took the first place in the class, and the teachers who taught him felt incredible. When I checked the room, I often saw him holding a reading machine in bed and studying seriously.
In 2015, Yue Yue was 12 years old and I was 35 years old. He came to me for the 34th review, and before he knew it, he had grown much taller, and had become a half-grown lad, and he laughed sheepishly when I teased him.
His eye disease became more "stubborn" as his immune system deteriorated, and his retina detached. In children, it is difficult to do surgery for retinal detachment, and it is even more difficult to treat retinal detachment in children caused by inflammation.
For a while, his retina was repeatedly detached, and I gave him 3 surgeries, each of which took several hours, but the effect was not very good, and I also had a deep sense of despair. So, I found their mother and son and told them the truth: "I tried my best, but I really couldn't keep it." ”
Yue Yue's mother knows my personality, so she didn't act too disappointed, she knew that if I said I tried my best, I would try my best. She also kept thanking me, and then prepared to take Yue Yue away. I was very sad in my heart, and that kind of self-blame and regret weighed down on me like a boulder. However, Yue Yue did not move, he sat on the chair and refused to get up, bowed his head, and did not speak.
Yue Yue's mother pulled me out of the ward, and she said to me, "You persuade him to give up." "I walked in, but after half a day I didn't know how to speak. It is cruel to persuade a person to give up the light. At this time, Yue Yue suddenly spoke.
He said that when he was 6 years old, he was diagnosed with leukemia, which was particularly sad, and his family took him all over the major hospitals, and finally arrived at Beijing Children's Hospital, where the doctor asked him to isolate and treat. At that time, his parents wanted to give up, but he refused. His parents asked him, are you alone in the hospital, are you not afraid? He said he was afraid, but he wanted to live more. In the end, his parents took him home for treatment. He said that time, he thought of death. At this moment, he looked up at me and said, "Uncle Tao, don't you give up on me, okay?" ”
So, I continued to operate on him, the high medical expenses, the difficult way to seek medical treatment, the endless tribulations, all of us bear great pressure and pain. Many people have advised me to give up, saying that if I insist on doing this, it will only make his whole family more miserable. But Yue Yue's parents said, "Director Tao, as long as you feel a glimmer of hope, we will smash the pot and sell iron." ”
In the past seven or eight years, as few as two or three times a year, and as many as dozens of treatments, the mother-in-law and mother-in-law insisted on traveling to and from Beijing. Yue Yue was getting taller, but his mother was getting older. Sometimes she would take the baby into the operating room, and when I came out, she would find that she was asleep on the bench. At that moment, I was truly infected by the greatness of human nature, and maternal love was enough to turn an ordinary woman into a hero.
She couldn't read a few characters, but for Yue Yue, she could ride her bicycle for more than an hour to the Internet café in the city to check the information, and learned to write me an email. She studied the two complex conditions of leukemia and uveitis like half an expert.
After so many years, she has not only regarded me as a doctor, but as her comrade-in-arms and relatives. She believed everything I said, she said that she liked to see me laugh the most, every time she brought Yue Yue to re-examine, if I smiled after I saw the diagnosis, it was her happiest moment; if I frowned after I saw the diagnosis, she would feel that the sky was about to fall.
On July 8, 2019, Yue Yue's 53rd re-examination, when he was 16 years old, and my daughter was also 8 years old, just the same age as when he first came to me.
Time passed so fast, nearly 10 years had passed, Yue Yue's two eyes had undergone 10 surgeries before and after, and as for the needles on the eyes, let alone 100 times. He was completely accustomed to this torture, never doing general anesthesia during surgery, only local anesthesia, and he said that the pain of eye surgery was nothing compared to doing a spinal puncture.
The graduate students I brought with me also admired the boy and asked him, "Aren't you afraid?" Yue Yue smiled very happily, but did not answer the question, but instead diverted the topic and said that his father had been running long distances for many years and had not returned home for the New Year, and his father said that if this operation went well, he would come back to accompany him for the New Year.
With my unremitting efforts, Yue Yue's fundus retina was finally no longer detached, but repeated chronic inflammation caused retinal calcification. The calcification made the supposedly soft retina as hard as a bone piece, and the normal retina that eventually remained guarded his little vision like an island.
In order to preserve his vision, I had to find another path – engineering. Perhaps predestined, I inadvertently met Dr. Huang who returned from studying in the United States and Dr. Song who graduated from Tsinghua University, which made me see a glimmer of light.
I went to their lab many times to participate in their discussions, and they were very concerned about Yue Yue. During the day we were busy with work, and at night I would go to their office and listen to their technical solutions while eating instant noodles. The blackboard was full of symbols I couldn't understand, but I didn't feel bored at all, I knew that these symbols had the possibility of restoring Yue Yue's vision, and I also understood Yue Yue's mother at once - as long as the doctor did not give up, she was full of fighting spirit.
Later, Dr. Weng, who returned from studying in Australia, dr. Feng and Coco of Peking University also joined, and they were particularly enthusiastic about communicating with Yue Yue and his parents to understand their living conditions and life scenes, hoping to research products that could help him in all aspects of his life as much as possible.
Together with them, I made a plan that quantitatively reflected the visual improvement situation, and they were very patient and serious, tirelessly testing Yue Yue's visual changes, and collaborating with researchers to continuously modify the program and improve the product design.
Just when we were all about to succeed, something happened to me (on January 10, 2020, a violent injury occurred at Beijing Chaoyang Hospital, and Dr. Tao Yong was seriously injured – Editor's Note). Later, Yue Yue's mother said that when she learned that I had an accident, she felt more desperate than hearing that Yue Yue was completely blind. She couldn't sleep well for several nights in a row, sent me text messages and emails, and she knew I couldn't see it, and wanted to come to the hospital to visit but was helplessly blocked by the epidemic. After Yue Yue knew, he had always had a cheerful personality, and he did not speak or laugh for many days.
In July 2020, I have been recovering for more than 100 days, and Coco sent a photo of Yue Yue reading and writing again. After a year of scientific and technological research, the smart glasses specially designed for Yue Yue have been done, and after Yue Yue wears them, he can see the words on the books again.
After 10 years, Yue Yue grew into a big and small guy, about the same size and weight as me.
For 10 years, fate had been too cruel to him, leukemia had made it difficult for him to bear weight, and God had almost robbed him of his light. He never gave up in those 10 years, and at the age of 6 he shouted, "I want to live!" Today, he is not only alive, but also regains the light, learns knowledge, and gains hope.
Whenever I think of him, all kinds of pictures will appear in front of my eyes: his father, wearing stars and wearing the moon, driving a bus in the cold winter and heat; his mother took him to the hospital for ten years, eating and sleeping in the wind; he endured the pain of each treatment while picking up the lamp to study; the team led by Dr. Huang and Dr. Song researched a mountain of product solutions...
Open Yue Yue's medical records, thick a large book, line by line, deep and shallow, some pages have been wrinkled and damaged, I want to follow their mother and son through the wind and rain for 10 years. All this gradually blurred, as if strung together into a rope, dead tugged at a person who was about to fall off a cliff. I think that the miracle that happened to Yue Yue was because everyone did not give up.
This is the 1% of life, this is the possibility of the 1%.
I am always willing to give 100% effort to this 1% possibility.
Author: Tao Yong & Li Run, Source: Reader Magazine, Issue 1, 2021, original title "How Big is the 1% World".