Chapter 149 Eighteen Reports of Liu Hong (1)

Sent: Tuesday, April 12, 2005 12:04 PM Subject: Eighteen Reports of Liu Hong everyone, Two months have passed, and it is another spring. These two months have been particularly difficult.Ziyou's platelet count dropped to zero after Chinese New Year (21st).On that day, I made a desperate decision—discharged from the hospital and left the hematology department.It's risky, but it's based on the consideration that I do know that low platelets will be a long-term condition.The bone marrow examination from the hematology department clearly showed that it was MDS (myelodysplastic syndrome, which is a malignant tumor). If I accepted this diagnosis, I would have to take medicine immediately, which may have serious side effects; or I would start preparing for stem cell transplantation.At least two months ago until now, I didn't want to do such a radical treatment, and I wanted to wait a few more months to see if the hematopoietic function of the bone marrow might recover.If there is no hope, go back and seek hematology treatment.In this case, it is not appropriate to continue to occupy a bed in the hematology department.However, Ziyou was still dependent on platelet transfusions, and living at home might not be able to cope with various emergencies, so I thought of living in Peking University Hospital.On the one hand, use medical facilities, and on the other hand, use the garden campus to do some physical activities within their ability.This is a relatively large strategic adjustment, from hopeful treatment to recuperation.We were all hopeful about this.We checked into the school hospital on February 28, booked a room and treated it as our home.Unexpectedly, extra problems continued, which brought great trouble to the doctors here.First, the ecchymosis formed on the original bump on the leg, which expanded every day, bleeding, and local infection was very dangerous. For this reason, gamma globulin, platelets, and antibiotics were infused successively.Because of Ziyou's "excessive" platelet transfusion after chemotherapy, he developed antibodies against platelet transfusion in September last year. This time I deeply realized its consequences—ineffective transfusion, which made the treatment method weak.Therefore, I would like to tell my friends that when you or your family members need it, you should understand the necessity and risks of each major medical measure as much as possible.I really can't bear to criticize the doctors at that time, but the lesson should be remembered.I understand that the doctor is out of safety considerations.However, safety has its own and patients; there are immediate and long-term ones.As a doctor, where is the degree of ensuring safety or avoiding risks?I think it is to benefit the patient to the greatest extent, and properly grasping this degree requires the doctor's sense of responsibility and medical skills, otherwise the risk may be passed on to the patient.Today, we are somewhat at risk of platelet overtransfusion.Sadly, I watched this process happen.On September 22, I wrote "Review on the Treatment of Ziyou's Low Platelets After Chemotherapy" and submitted it to the doctor at the hospital at that time, in which I wrote: "I understand that clinical medicine is experimental. , and in the case of inexperience, may take detours. Therefore, we have to pay some initial costs; however, doctors should be able to discover problems in time, expand the original knowledge through research and exploration, and correct them in time Mishandling."

After the bleeding on Ziyou's leg was brought under control, a serious nosebleed occurred again.At the same time, a fever of unknown cause occurred for three weeks.During this period, Ziyou suffered a lot of physical pain and loss.At present, his weight is the lightest since the onset of illness, less than 110 catties (height 1.80 meters).For the body and its subtle changes, I began to explore and understand.This morning, a Shanghai friend who had been ill for a long time told me his experience: the potential of the body is beyond imagination.I believe it.Since last Thursday, Ziyou no longer has a fever, eats well, is still not able to go to the ground, the platelets have not improved, today 4K.The "branches" that grew out of the festival are all gone. Next, my attention will be mainly on his platelets.Because nosebleeds are his daily routine, he has been free of nosebleeds for a week by using a humidifier at night and using erythromycin eye ointment before going to bed (write this as a "recipe", maybe it will be useful to someone).Ziyou and I lived in the hospital, and my mother came from the city to help care for the children basically every day. However, the above dangers and dangers are only part of our life, and the other part is entertainment and "spiritual life".As long as he is physically able, Ziyou still reads and tells jokes.We have been helped by friends.Counting, Ziyou would be about to graduate from the third year of junior high if he went to school, and more than 50 teachers from the primary school attached to Peking University where he used to work planned to give him a meal every day. I was moved by this kindness.But I certainly can't trouble so many people.At present, the mothers and class teachers of Ziyou Primary School students deliver a meal once a week.Danyun once again arranged for Buren, Uzhina and Norman's family to come to the ward to sing for Ziyou. The last time was during chemotherapy at the Sino-Japanese Hospital. Her (his) singing was the most beautiful singing we have ever heard; Han Xing accompanied us every day and provided great help from the most meticulous; Zhu Zhenglin and his wife cared about every hurdle we went through and shared many thoughts and experiences with us; Very well, I searched various platelet-increasing materials from the Internet and sent them to us; the list goes on and on.I also rely on these lovely friends.Because of Ziyou's poor health and low immunity, we basically refused visitors during this period.Yesterday (10th), Ziyou spent his 15th birthday in the hospital.Two days ago, his elementary and middle school classmates came to visit him one after another. His teacher and every classmate wrote messages to Ziyou. Shanghai Children’s Publishing House, which is planning to publish a book for Ziyou, specially printed Ziyou’s poems. and name posters; Liang Jing Studio undertook the printing of "Ziyou 14-year-old Anthology", making it the most exquisite book in our family's collection of Ziyou's anthology since Ziyou was 8 years old. After being ill for a year, Ziyou wrote 140,000 words. On the 9th, our family gathered in the ward. At noon on the 10th, Tian'er and Ziyou ate noodles together. In the afternoon, An Ning sent cakes made by her and girls from No. 4 Middle School.There are also many friends, friends from other places, foreign friends, who are constantly caring, supporting and helping us.One day, an old friend, Lao Hua, came to visit unexpectedly and said that he could not contact us, "my heart was shaking", and many friends came to inquire because they had not heard from us for a long time.The concern of friends supports us and makes us happy.