"I want to do my best to save my son, and the treatment is day by day. Putting on a takeaway suit and riding an electric car, 41-year-old Huang Jianyong struggled to shuttle through the urban area of Jinan below 0°C. In his eyes, compared with his son's huge medical expenses, although the income of a few yuan per order is a drop in the bucket, it is always a hope.
Huang Jianyong ran a takeaway to raise money for his son's treatment
On February 4, 2022, Huang Jianyong's 2-year-old son Xiaoqi was diagnosed with "neuroblastoma". "In two years, we have spent nearly a million, including 600,000 on loan. Huang Jianyong said that in order to treat their children, he and his wife had to rent a low-rent house closest to the hospital and earn living expenses by running food every day, while his 69-year-old father chose to travel from his hometown of Hebei to Beijing to work. Even so, there is still a big gap in the money that Xiaoqi needs to treat his illness.
Recently, Huang Jianyong told reporters that Xiaoqi's condition had gradually stabilized, but not long ago, the child began to have stomach pain again, "After an examination, it recurred, and there was a tumor in the abdomen." Now, he and his wife have once again checked out the procedures for Xiaoqi in the Affiliated Cancer Hospital of Shandong First Medical University (Shandong Provincial Cancer Hospital) to prepare for another operation.
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Raise funds for your child's medical expenses
In temperatures below 0°C, he still struggles to take orders and deliver takeaways
On December 12, the rain and snow in Jinan temporarily ushered in the "intermission period", but "the good times did not last long", at 11 o'clock in the morning, the Jinan Meteorological Observatory continued to issue a yellow warning signal for road ice, and a new round of cold wave was already on the way. Looking at the white road in front of him, Huang Jianyong didn't dare to stop for a moment, and could only keep reminding himself to be careful and slow on the way to deliver food, "I can't have any more accidents, otherwise this family will collapse." ”
Wear an old down jacket, and then put on a takeaway suit, a helmet and a pair of gloves...... At 10 o'clock in the morning, after saying goodbye to his son in a hurry, Huang Jianyong rode on a battery car and began to take orders and deliver food back and forth in Jinan City. His wife stayed in the rental house to take care of his 3-year-old son, Xiaoqi.
Photo of Xiao Qi being treated in the hospital
She also has a lot of things to do, and when she was doing chemotherapy, Xiaoqi couldn't sleep every night, so she walked back and forth with Xiaoqi in her arms, and there was no moment of relaxation. Huang Jianyong said that on the way to deliver food, he was particularly afraid of receiving a call from his wife, afraid of hearing bad news, and worried that he would have to go home temporarily and delay the delivery.
Talking about food delivery, Huang Jianyong admitted frankly that he didn't know it at first, "I used to work on the construction site, tie steel bars, and I have never been in contact with takeaway." But since his son fell ill and quit his job, he tried to deliver food at the suggestion of the patient's family in order to make a living.
"There are two fellow villagers who take me to run, after all, I have free time to run for takeaways, and I can take time to run after I am busy with my children. Huang Jianyong said that sometimes when a child wants to go to the hospital for chemotherapy, he may run five or six orders a day, and sometimes he can run 20 orders without treatment. "I remember one time it rained, there were more orders, I ran 30 orders, and I could earn more than 2,000 a month on average. ”
For 41-year-old Huang Jianyong, his age is not very competitive among food delivery riders. "I can't catch up with young people when I climb the stairs, and I don't dare to run too fast. The noon peak and evening rush hour are only done for 5 hours a day, and the number of dispatches in the system has dropped significantly. But despite this, he persisted. As a family member of a neuroblastoma child, money is the hope of the child's survival, so he didn't dare to stop, so he could only help take care of the child while trying to make money.
"It's definitely tiring, but as soon as you get home, it's okay to feel tired when you see your child. Huang Jianyong said that once when he came home from a takeaway, Xiaoqi, who was playing in the game, suddenly ran to him and said to help him wash his feet. "I feel very sad, I used to think that the child was small and didn't understand the difficulties at home, but every time I saw him sensible, I felt that he should actually know everything in his heart. If only nothing had happened. ”
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On the child's 2nd birthday
Diagnosed with "neuroblastoma"
The dramatic change in Huang Jianyong's family occurred in January 2022. Previously, they had a family of seven, elderly parents, and three children. "Four or five years ago, I borrowed money to build a new house in my hometown of Linzhang, Hebei Province. Huang Jianyong said that at that time, he was working on the construction site, his wife and mother worked with their children on the family farm, and his father occasionally went out to do odd jobs. Although the family is poor, they live a very happy life. "We also plan to buy a car in two years, so that life can be better. ”
However, in January 2022, as Xiaoqi, who was just over 1 year old, continued to have a high fever, the family's thoughts stopped. "I had a fever all the time, and after taking antipyretics, I had a fever again not long after it subsided. Huang Jianyong told reporters that he had taken his child to the village doctor and the town's outpatient clinic many times, but the cause could not be found, and Xiaoqi's high fever has been repeated.
Xiao Qi draws and plays while he is being treated in the hospital
According to Huang Jianyong's recollection, in late January 2022, they checked out Xiaoqi's hospitalization procedures at the county hospital, and soon after that, he was transferred to Handan Central Hospital. Later, the child was transferred to Hebei Provincial Children's Hospital, and then diagnosed with "neuroblastoma": "That was the first time we heard about this disease, and that day also happened to be Xiaoqi's second birthday. ”
Neuroblastoma is the most common extracranial tumor in children and the most common tumor in infants and young children, commonly known as the "king of childhood tumors". Neuroblastoma is a neuroendocrine tumor that can originate in any part of the nerve ridge of the sympathetic nervous system.
In my memory, Huang Jianyong and his wife always remember what the doctor said on the day of diagnosis, "He (the doctor) said that it is now at an advanced stage, and the tumor is already very large." Huang Jianyong told reporters that the time span from the child's fever symptoms to the final diagnosis was less than a month, but when the "late" news came out of the doctor's mouth, he and his wife sat directly on the ground. "Although we have never heard of the name of this disease, the word 'late' makes us feel like a bolt from the blue. ”
Despite feeling desperate, Huang Jianyong and his wife decided to rush to treatment for Xiaoqi. General examination, genetic monitoring, bone marrow aspiration surgery, intensive care unit observation, continuous chemotherapy...... After a series of treatment measures, Huang Jianyong probably spent 70,000 or 80,000 yuan. "At that time, it was just the Chinese New Year, and in addition to the construction site boss giving me a year's salary, my brother also gave me 20,000 yuan. Huang Jianyong clearly remembers that on the day of his diagnosis, he went through all the address books, held back his tears and borrowed money from relatives, friends, neighbors, and co-workers, and borrowed a total of 300,000 yuan. "They didn't hesitate and told me, 'See your child first, and call when it's not enough.'" Later, the child was transferred to the Affiliated Cancer Hospital of Shandong First Medical University (Shandong Provincial Cancer Hospital) for treatment.
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High cost of treatment
It's still a family problem
As an ordinary rural family, money has become a key issue in the process of treating Xiaoqi. In just two years, surgery, chemotherapy, radiotherapy, transplantation, ...... Huang Jianyong said that of the nearly one million yuan spent, except for a small part of his family's only savings, almost 600,000 yuan was borrowed from relatives and friends, as well as relief funds from the government and foundations, and donations from well-wishers.
Huang Jianyong remembers that Xiao Qi had complications after a stem cell transplant and was in a particularly critical condition. "At that time, the attending doctor called me into the office and told us to prepare mentally. At that time, Huang Jianyong had already handed over all the money he had borrowed to the hospital, and he still owed the hospital thousands of yuan. "In desperation, I had to call my father and ask him to get some more together in his hometown. ”
Xiaoqi's grandfather worked in Beijing
The elderly father walked around the village and was unable to scrape together more money for treatment.
In the days that followed, Huang Jianyong worked hard to run the takeout, and his father also stepped on the train to Beijing with the villagers. "Part-time job, 100 yuan a day, we don't want to give up Xiaoqi. Huang Jianyong's father told reporters that he is 69 years old and has been doing greening work since he arrived in Beijing in February, and even though he has a chronic disease, he wants to do his part for his children. Therefore, as soon as he is paid every month, he will send the money to his son, "although it is small, but it is a little." ”
According to Huang Jianyong's discharge diagnosis certificate from the Affiliated Cancer Hospital of Shandong First Medical University, Xiaoqi was hospitalized in the pediatric tumor ward of the hospital from October 13 to October 28 this year. The discharge diagnosis from the hospital showed that he had multiple symptoms such as retroperitoneal neuroblastoma (stage IV high-risk group), multi-site lymph node metastases, (multiple) bone metastases, bone marrow suppression after chemotherapy, and infectious fever.
According to top news reports, Mr. Huang, the village secretary of Xigang Village, Linzhang Town, Linzhang County, Hebei Province, where Huang Jianyong's household registration is located, confirmed that Huang Jianyong is indeed a villager in his own village, and said that he is an ordinary family in the village, and the child does suffer from cancer, and the family expenses are very large. The director of the Linzhang Town Civil Affairs Office also said that he had applied for subsistence allowance for Huang Jianyong's family, and the county medical insurance bureau helped him apply for medical assistance for serious illnesses, and the civil affairs department also gave assistance, but the expenses needed were too much, so he could only do his best to help.
"I don't know exactly how much money I'm going to need, but I can't borrow any money anymore. Huang Jianyong said that a few days ago, Xiaoqi's condition gradually stabilized, "I did an examination, and the cancer cells have been completely cleared." However, in order to better stabilize the situation, the doctor suggested that they be immunized, that is, to give the child a new drug, called datuximab β injection, "It costs more than one million yuan to use this medicine, and it can't be reimbursed, so we can't get it, so we go home first." But Huang Jianyong didn't expect that a month later, the child began to have stomach pain again, "After an examination, it recurred, and there was another tumor in the abdomen." ”
Huang Jianyong once launched a fundraiser for Xiaoqi on the Water Drop Chip
It is understood that datuximab β injection is a specific drug for the treatment of relapsed or refractory high-risk neuroblastoma with or without residual disease. In August 2021, datuximab β injection was approved by the National Medical Products Administration, becoming the first targeted immunotherapy drug approved for the treatment of neuroblastoma in mainland China. According to the list of 121 new drugs that have been successfully negotiated by the National Health Insurance Administration this year, datuximab β injection is not among them.
"If this medicine can be included in the medical insurance, we can report 80% of the subsistence allowance. Huang Jianyong was very regretful, but he was still unwilling to give up the treatment, and insisted on running takeaways while trying to see if there was another way to get money. Now, he and his wife have once again inpatient Xiaoqi in the Affiliated Cancer Hospital of Shandong First Medical University, preparing for another operation, and taking the "upper immunity" treatment into their consideration.
Red Star News reporter Luo Mengjie Practical Xi Guan Liubo Photo provided by the interviewee
Edited by Guo Zhuang and edited by Guan Li
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