In 20 10, I married my ex-wife and gave birth to my eldest son Li the following year. At first, our family had a good time, but it was too short. When the eldest son was born 12 days, he began to have blood in his stool, ranging from several times to a dozen times a day. After the examination in Bazhong Central Hospital, the doctor found that the child's platelet was only 28, and it did not improve after several days of treatment. Then we transferred to the Children's Hospital affiliated to Chongqing Medical University, where Xiao Yanhao's condition was still out of control after 33 days in hospital, and his platelets dropped to single digits.
Due to financial difficulties, we had to leave the hospital with Xiao Yanhao, who was just born for more than a month. Later, under the diagnosis of an old local Chinese doctor, we began to prescribe Chinese medicine for Yan Hao. For a newborn child, the unpleasant smell and taste of traditional Chinese medicine is unacceptable to him, so when he is given medicine, he often cries until his voice is hoarse. When we watched the child cry, our hearts were bleeding. But for the sake of children's health, we have no choice. After taking Chinese medicine for two or three months, Xiao Yanhao's condition improved. We finally breathed a sigh of relief, but we were happy and full of doubts. What's wrong with the child?
Since then, the husband and wife have moved to Chongqing Children's Hospital, Beijing Pediatric Research Institute, Tiantan Hospital, Chengdu Huaxi Hospital, Inner Mongolia Mongolian Medical Hospital, Shanghai Children's Medical Center and other hospitals to diagnose their son's illness. Spent a lot of time and money, but failed to diagnose the cause for Xiao. It WAS not until 20 16 that Yan Haocai was diagnosed as eczema-thrombocytopenia with immunodeficiency syndrome, also known as WAS syndrome, in Chongqing Children's Hospital. This is a disease with an incidence of only one in 100,000 and a very high mortality rate. Patients will have recurrent nosebleeds, infection, fever, swelling and pain of limbs, ecchymosis, recurrent eczema and other symptoms.
The diagnosis completely knocked us down. It was syndrome, a disease we had never heard of. How could it happen to my children? Due to repeated eczema, skin itching is unbearable, and Yan Hao will scratch it repeatedly. In serious cases, the child does not have a good skin, and even his face is scratched. This eczema is the most itchy when sleeping at night. During the two years when he was seriously ill, Yan Hao could hardly sleep at night. At that time, my ex-wife and I had no choice but to accompany the children.
And this is not the most deadly. In the past nine years, Yan Hao was often hospitalized for infection, with an average of 1 2 hospitalizations per month, and was often promoted to ICU for rescue. That kind of torture is extremely cruel to any parent. The doctor told us: "children with this disease rarely live to be 9 years old, and only bone marrow transplantation can cure them." Therefore, my ex-wife and I followed the doctor's advice and prepared to have a second child for bone marrow transplantation, thus completely curing Yan Hao. However, this day was not satisfactory. The bone marrow matching result of the second child was half consistent with that of Yan Hao, and all our previous plans fell through. The doctor couldn't bear to see us hit hard, and suggested that we take good care of our children and find a suitable match in the Chinese bone marrow bank.
20 19 we received a good news: the doctor found a perfect volunteer for the child in the Chinese bone marrow bank. Our whole family was very excited when we received the news, but our joy was quickly cooled by reality. Because before transplantation, you need to pay 20 thousand yuan for volunteer physical examination and 350 thousand yuan for bone marrow transplantation.
I said to the hospital, "Can you wait until I raise enough money?" The doctor is also in a hurry. He told us, "It's hard to find a perfect donor. If it is delayed now, the volunteers may not be able to donate anything. " But where did we get so much money? We borrowed money everywhere to get 20 thousand yuan, but we could only watch the opportunity slip away in vain Finally, a kind nurse told us: "You can apply for help from the foundation while arranging the cabin in the hospital."
That time was really the "darkest moment" in our family, and the child's condition became more and more serious, waiting for a bone marrow transplant to save his life; My ex-wife and I also broke out because of various contradictions, and finally embarked on the road of divorce. Looking back on that desperate time now, I feel that I am walking alone in the endless night and I have never seen a glimmer of light. But seeing the desire for life in children's eyes, I have to cheer up. Anyway, I am a father, and I will face it bravely for the sake of my children.
Many things happen. Finally, on June 5438+February 65438+May, 2020, I received a phone call from a hospital in Shanghai, saying that I had a position where I could take my children for a transplant. And with the help of good people, we also raised some treatment expenses. From June 5438 to February 2020, the child entered the transplant warehouse, followed by his ex-wife. Although we are divorced, I know she still loves children.
How can the road to transplantation be smooth? When transplanted in the warehouse, Yan Hao's skin was rejected twice, and then infected with CMV virus, BK virus and so on. Because of the shortage of beds in Shanghai, we will be discharged when the child is better. At that time, I was happy to think that nine years of persistence finally paid off, and now the child can finally be reborn. However, what I never expected was that one month after leaving the hospital, Yan Hao had skin rejection again. He has diarrhea a dozen times a day. Due to the lack of beds, we waited outside the hospital for five days before we were admitted to the hospital. At that time, the child was exhausted and weak.
This hospitalization is almost 1 month, and the child's condition is still not getting better. People say that "transplantation is valuable, but rejection is priceless", and now we are faced with such a situation. All the treatment expenses raised before have been spent, and we really don't know how to go on in the future.
In the past nine years, Yan Hao has not lived the life that a normal child should live for a few days. He spent most of his childhood in the hospital and never spent a holiday at home. He is also very sensible at the age of 9. Every time I buy him stewed chicken and pigeons, he will give me something to drink. He said he didn't want to eat or couldn't eat. Moreover, he loves learning very much, and he starts to learn every time his health improves slightly. He encouraged himself to become a doctor, not only to save himself, but also to save his sick child.
Looking at the child's understanding, I often secretly shed tears, and I can't imagine how I would live without him.
If you want to give a love, you can long press the identification QR code to view the details of the project and make a donation. If you can't identify it, you can save the QR code to the mobile phone photo album, turn on scanning, and select the QR code from the photo album for scanning and identification. This project was initiated by China Social Welfare Foundation's 9 19 serious illness rescue project, and launched fundraising on the Internet fundraising information platform "Water Drop Public Welfare" designated by the Ministry of Civil Affairs, and was responsible for project review, implementation and information feedback. The final interpretation right of this project belongs to China Social Welfare Foundation. Tel: 4009-0 10-9 19.