Volunteers help children with blood cancer regain a colorful childhood.
Sunlight comes into the room where children with small masks are playing some colorful toys and mothers are doing yoga in another room.
Two children are role-playing doctors and nurses. "You need to do a bone marrow puncture." The little girl holding a toy needle in her hand says seriously to her small playmate, a little boy who looks even younger.
“It's leukemia.” says the tiny “doctor”. The children are in fact both blood cancer patients in Beijing’s Pediatric Palliative Care Center.
In china, every hour, four children are diagnosed with malignancy. According to Global surveillance of trends in cancer survival 2014，the 5-year net survival rate of childhood leukemia in China was 57.7%. However, Japan's net survival rate is 87.6% and the United States is 89.5%.
According to Cancer Hospital Chinese Academy of Medical Science, the incidence of children with cancer in China is on the rise, increasing by approximately 2.8% annually. More than 60% of children with leukemia have used secondhand smoke throughout the year. The treatment of hematological neoplasms requires long-term chemotherapy. There are many side effects during chemotherapy, such as hair loss, decreased immunity, vomiting and pain. From the time the disease is diagnosed to the treatment process, these children suffer from great physical pain and unknown mental and spiritual sufferings. Treatments that lasted months or even years left children isolated and they lack communication with their peers and the outside world. They cannot enjoy a normal childhood. Their parents also suffer from internal anxiety and stress. In a survey of children's hospitals across the U.S., 69% reported having a palliative care team. At present, apart from Beijing and Shanghai, almost no hospital has Pediatric Palliative Care teams in China.
As an independent discipline, Palliative Care originated from a hospice care campaign initiated by British Christians, and thus the first St. Christopher's Hospice of Care established about 50 years ago. In 1990, the World Health Organization put forward the principle of palliative care, and in 2002 it expanded its connotation, taking into account the overall physical, mental, social, and spiritual needs. However, it is very hard for parents in China to accept Palliative Care because in their view, receiving Palliative Care is equivalent to giving up their children.
On August 6, 2014, the New Sunshine Pediatric Palliative Care Special Fund initiated by Dr. Zhou Xuan, from Hematology Oncology Center in Beijing Children's Hospital was established. The Special Fund includes the "Pediatric Palliative Care Center" and the "Daisy House", the first hospice care ward for children in Beijing. With the active efforts of Dr. Zhou, on May 4, 2017, the Pediatric Palliative Care Subspecialty Group of the Pediatric Branch of Hematology Section of the Chinese Medical Association was established, signifying that Pediatric Palliative Care was officially recognized as a sub-profession, which can help more children with cancer in different areas in China.
"During my studies in the United States, I discovered that there are a lot of humanistic concerns in treating children with cancer, but China nearly has no pediatric palliative care because the medical resources are very tight in China. The beds of the Blood Cancer Center of the Beijing Children's Hospital were so intense that they could even be described as “bad environments," said Zhou Xuan, from Hematology Oncology Center in Beijing Children's Hospital. " The number of approved beds was 120 and the actual number of admissions was 200. Therefore, on the one hand, it is difficult to find a space in the hospital dedicated to children's palliative centers and children’s hospice wards. On the other hand, doctors who are able to see these patients every day are already tired and they only have limited energy to devote to Pediatric Palliative Care.”
China is at the very early stage of Palliative Care. There are only few hospice care. According to Zhou Xuan, in fact, palliative care should be carried out throughout the treatment like America. When children were diagnosed with cancer, the palliative care should begin at once. Comprehensive Pediatric Palliative Care should at least have four aspects including pain and symptom management, psychological support, social support and hospice care. It can help patients fight the pain and improve the quality of life. These were ignored in the past in China.
"I hope Chinese children can also feel that not only their parents are concerned about them, but everyone is helping them. In the past, doctors only finish their work to see their patients and now we pay more attention to let children feel comfortable. For children who cannot be cured, the doctor will keep in touch with them and help them reduce suffering.” Dr. Zhou Xuan says, from Hematology Oncology Center in Beijing Children’s Hospital.
The Pediatric Palliative Care Center provides regular activities every week. Children at the center can take off their hats and make friends with their peers. "Every week, we have some volunteers come here to teach children, such as painting classes, music treatment lessons, etc. Certainly, there are some other different activities. These days, we are preparing for Children's Day." Wang Yun, the director in the Center said.
Wang Yun is the only employee in the center. Others workers are volunteers. At present, there are about 200 registered volunteers. Some of the volunteers are only responsible for playing with children, some are responsible for teaching children, and others are on-duty volunteers who are responsible for handling some emergencies.
"The number of volunteers is constantly on the rise because more people know about Pediatric Palliative Care. I admire these volunteers very much. Most of them have their own work, but they still take their time out of their busy schedule to help these children. They are a group of guardians who protect children's normal colorful childhood." Wang added.
Wei Wei is one of those volunteers, and has done so for three years. Yet, she's a full-time mother and responsible for everything at home.
"Every time I come here, I feel a little heavy because I always remember inadvertently that they are seriously sick children. They are different from other children." Wei Wei said.
She was very willing to take some delicious food she made to the children. Later, she realized some food they cannot eat. She thought she might do wrong things with good intention. She said she has more concerns when she plays with these children.
Wang Xvping is 58 years old, the oldest volunteer in the Center. She usually come to Center on weekends. She takes at least 10 hours a week to stay in the Center.
"Once I met a child who had a good characeter, but after a period of chemotherapy, her face became very fat. So, she felt herself inferior and became unwilling to speak to other people. She always stayed away from others and played with herself. I tried to ask her why she did not play with other children and found she was not confident about her appearance." Wang said.
Lv Jingjing, 41-year-old, works in a real estate company. She usually spends two days a week here. Her main job in the Center is to play with children. "Every time parents bring their children to here. Children play with us and parents can relax temporarily and communicate with each other. Mothers can come here to have yoga class every Thursday." Lv Jingjing said.
"As a volunteer, my ability is limited. I cannot relief their suffering like a doctor. I only can try my best to let more people know children's palliative care and I hope more people can join in our team and create a better environment for these children."
Zhang Bohan is a student at Capital Medical University. She has been a volunteer for half a year.
“I pay more attention to their physical and psychological changes when I play with them. For example, I can't forget to remind them to drink water when playing." says Zhang Bohan.
Dong Qiuli, a psychologist in the center. She is a national secondary psychological consultant. Every Saturday afternoon, she will go to the center to do psychological counseling for parents.
"I stay with them and give them strength. Most of mothers are concerned about the communication with their children. For example, some mothers become more anxious after their children become ill and it is difficult to for them to communicate with their children. I will give them some methods to help them."
"Since I knew this center, I bring my son to here every week. He attended flower classes, music lessons, and calligraphy classes. My son has learnt a lot of things at Center. These activities enrich our life. Last time when we returned to our hometown, I found children who had lived in the same ward with my son had significantly worse state of health than my son. My son looks obviously happier than them. The change that Palliative Care brings to the children is very obvious." says the mother of Wang Yuntian, a 7-year-old child with leukemia.
" The Palliative Care Center brought new hope to us. Volunteers are kind like a warm sunshine." She added.