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Elephant News reporter Zhu Jiuyang Correspondent Wang Hui Editor Xia Yu Intern Zhang Jiaming
Xiaoyun, a single mother, lives with her 6-year-old daughter, Miaomiao, in a rented house 3 kilometers away from Henan Provincial Children's Hospital, and the monthly rent of 2,400 yuan is a bit unaffordable for her. "Children with blood diseases have higher requirements for living environment and hygiene, and the rent of the house near the hospital is higher, so there is no way to ......" For Xiaoyun, every penny spent at the moment needs to be carefully calculated.
Xiaoyun is from Xinxiang City, Henan Province. In the first half of 2023, after more than three years of strife, her marriage with her husband came to an end. After the divorce, she didn't have time to clean up her mood and breathe calmly, and new hardships came.
An unusual "high fever"
In August 2023, it is the time for my daughter Miaomiao's reading to be young. One day after school, Miao Miao suddenly yelled that she was weak and had a high fever. According to Xiaoyun's recollection, under the medication at that time, her daughter continued to have a high fever for two days, and her body temperature was as high as 39 °C. After an examination at the local county hospital, Miaomiao's blood routine showed abnormalities. At first, the doctors also thought that Miao Miao was just a simple bacterial infection, and prescribed some drugs for Miao Miao to take at home.
In September, Miaomiao's body appeared abnormal again, her face was bloodless, her toes were swollen and her right arm was painful, and in desperation, Xiaoyun took her daughter to the First Affiliated Hospital of Xinxiang Medical College. "The preliminary suspicion is that it is a blood disease, let's go to the hospital first!" Under the doctor's advice, Miaomiao underwent a bone puncture examination.
"I just remember that the child kept crying, and kept holding my hand tightly and saying that he was scared!" Xiaoyun hugged the child tightly and said to her daughter over and over again: "It's okay, mom is here, it's okay." And in her mind, there is one word repeated countless times: misdiagnosis. However, the god of luck did not favor the mother and daughter, and Miao Miao was finally diagnosed with acute B-lymphoblastic leukemia with myeloid differentiation (intermediate risk).
Holding her daughter's diagnosis certificate, doubts, fears, and helplessness came to her heart, Xiaoyun pinched her thighs with all her strength, trying to regain her senses, and under the depression, she avoided her daughter and ran to the hospital corridor alone and cried bitterly.
After the divorce, Xiaoyun, in order to make up for the debt to her daughter, worked hard to give her daughter a good environment, and she got up early every day to be greedy for darkness, and all this came to an abrupt end with her daughter's diagnosis.
On December 23, 2023, according to the needs of treatment, Miaomiao was transferred to Henan Provincial Children's Hospital. Because Miaomiao's disease is mixed leukemia, the condition is complex, the treatment is difficult and the cost is high, hematopoietic stem cell transplantation is not ruled out in the later stage, and the doctor informed Xiaoyun to be psychologically prepared.
The daughter of "love stinky beauty" is reluctant to look in the mirror again
After saying goodbye to class and moving into the ward, young Miao Miao began a long and painful period of chemotherapy.
Chemotherapy drugs flow silently through Miaomiao's body, leaving behind endless erosion and pain. During chemotherapy, Miao Miao experienced severe nausea, vomiting, and loss of appetite. Treatment procedures that even adults cannot tolerate are now routinely used by 6-year-olds.
Before the treatment, Miao Miao liked to tie two small braids, and under the stimulation of chemotherapy drugs, her hair began to fall out a lot. "Mom, can I not shave my head? I want to grow my hair, and I have to comb beautiful braids......" Helplessly, Xiaoyun tearfully agreed to her daughter's request. But looking at her daughter's sparse hair, she would rather bear all this for her daughter.
During her ward rounds every day, Miao Miao would stare intently at the doctor and listen intently to her condition. "She always believes that she can be well, and she firmly believes that she can go back to school!" The strong desire to survive revealed by her daughter's young age made Xiaoyun's determination to cure her daughter even stronger.
After two courses of chemotherapy, Miao Miao seemed to be a different person, her hair fell out, her hormone face looked puffy. "She used to love 'stinky beauty', but now she doesn't want to look in the mirror anymore. Xiaoyun looked at the changes in her daughter and was distressed.
For a long time, avoid brushing until eating and broadcasting is hungry and crying
The daily routine of the ward is monotonous and boring, and every day is the pungent smell of disinfectant water, endless pills, and endless needles.
In addition, she also accompanied Miaomiao to the hospital ward to study and paint, trying to keep her daughter's mood as happy and cheerful as possible. When her physical condition improved, Miaomiao also asked her mother to take her to the square to swing, watching her daughter swinging in the air and laughing happily, but Xiaoyun's heart was mixed.
When Xiaoyun is alone and lacks skills, Miaomiao's grandmother will also go to the hospital to assist and escort, responsible for cooking and delivering meals to Miaomiao. Usually, Miaomiao's meals need to be strictly sterilized, and they are required to be high in protein and avoid greasy. Under the long-term taboo, the three meals are light and tasteless.
"Mom, when I'm ready, I'll be able to eat!" Xiaoyun said that although her daughter wants to eat delicious food, she has shown strong self-discipline in order to recover. "The content of children's daily drawings is almost all food, chicken legs, hamburgers, fries, once brushed to eat broadcasts, staring at the food on the mobile phone screen and crying...... "In Xiaoyun's mouth, the daughter who was not sick was the pistachio of the family, and now she has suffered so much, but she still pretends to be strong, she draws cartoons of what she wants to say, the food she wants to eat but can't eat. "You can smell it, but you can't eat it, it will worsen if you eat indiscriminately, and your mother will spend a lot of money!"
Do a puncture and take the initiative to open the mother
"Mom, let me go to heaven, will you have another child...... During the treatment, the great pain was imposed on a young and delicate child, and often caused Miao Miao to almost collapse. Almost every bone piercing check, Miao Miao would cry until her clothes were soaked.
"You are mother's baby!" Xiaoyun was helpless for her daughter's crying, often her daughter was crying inside, she was crying outside, she could only comfort her daughter over and over again, silently praying that her daughter would get rid of the pain as soon as possible.
After a long time, Miaomiao will take the initiative to separate her mother and grandma before doing bone piercing. "I'm afraid that my mother will feel distressed when she hears the cry!" Miaomiao's sensibility and caringness made Xiaoyun feel both relieved and sad.
"I am most worried about losing my child due to insufficient treatment costs!"
At present, Miaomiao is undergoing the fifth course of chemotherapy, and the follow-up chemotherapy will continue for a period of time, and then according to the index evaluation of whether further chemotherapy and transplantation are needed, the cost gap will be hundreds of thousands of yuan.
In addition to feeling sorry for the child, more difficult problems are laid bare in front of you. Miaomiao's treatment has cost more than 200,000 yuan for more than half a year now, most of which Xiaoyun borrowed from relatives and friends. Because of taking care of the children in the hospital, Xiaoyun has no way to go to work and has no source of income.
"I couldn't sleep all night, and I kept praying that someone would come and help us, help my children. I was scared, scared of losing my child because of the high cost of treatment." Xiaoyun said that he only saw the plot in the TV series in the past, but he didn't expect it to happen to him one day, and he never thought that this road would be so difficult. But no matter how difficult the road ahead is, I will accompany my daughter to go on. (In order to protect the privacy of the interviewees, the names of the people in the article have been changed)