【Feature 158】White "Golden Ribbon"
Starting from the Aolin Building in Gulou District, Fuzhou City, walking 600 meters, 700 meters and 2100 meters respectively, you can reach the three largest general hospitals in Fujian Province.
In Aolin Building, there is a charity service center for the poor called "Fujian Golden Ribbon", which is a mutual aid organization established spontaneously by a group of parents of children with leukemia.
Since its operation in 2020, families of children with leukemia have often followed the same path, seeking help and solace from three hospitals.
For parents, one end of the ribbon leads to despair, but as more and more people who have been tricked by fate become entangled and connected with each other, the possibility that they will reach the other end of the ribbon to reach hope and rebirth becomes more and more likely. .
Fear, sometimes more terrifying than the condition
"Sorry, we're late." One evening in early summer, Bai Yang's family of four rushed to the Aolin Mansion in the rain. They would spend the next few days in the "Golden Ribbon" inn.
Every family of children with leukemia who come to the "Golden Ribbon" can receive a "white treasure box", which contains necessary items for admission treatment, including thermometers, thermal blankets, and thermal lunch boxes.
"Golden Ribbon" also provides free short-term accommodation services for families who have just arrived in Fuzhou from other places.
As soon as he entered the door, Bai Yang's wife couldn't hold back, and plunged into the arms of Sanyi, a volunteer who was on duty, crying.
Bai Yang couldn't stop him, so he turned his back to the person and stood straight looking out the window.
In fact, before arriving at the inn, their family had already cried a bit downstairs, but when they saw the people and things in front of them, they couldn't hold back their emotions, and they lost their "decency".
Bai Yang and his wife grew up in the countryside of Quanzhou, and have not attended any school, but they saw a laboratory report from a local hospital not long ago. lost.
In 2018, Bai Yang's youngest son suffered a sudden high fever and was subsequently diagnosed with acute lymphoblastic leukemia.
During the two years of treatment in Fuzhou, the family rented a house in the Aolin Building, and got acquainted with several parents of children who later became directors of the "Golden Ribbon".
After treatment ended last year, Bai Yang's 11-year-old son went back to school.
I thought that the previously interrupted studies would be expected to catch up, but the "relapse" brought everything back to the original point.
"Don't give up, be hopeful." Sanyi comforted Bai Yang's family, but he did not know when his eyes were red.
"Hopeful", this is what Sanyi has repeatedly said to herself and those around her since her son was diagnosed with leukemia in February 2019.
According to the data released by the National Health Commission, the average cure rate of childhood acute lymphoblastic leukemia is 80%.
However, when oneself becomes that unfortunate 20%, the high healing rate becomes a kind of harm instead.
"Why is it us?" Sanyi couldn't answer the question that Bai Yang's wife repeated over and over again.
In fact, Sanyi and many parents of children have similar concerns.
A week before receiving the Bai Yang family, Sanyi felt a raised lymph node on the neck of the child who had just stopped taking medicine for less than half a year.
Although he has never stopped dealing with leukemia in the past few years, every day after taking his son for biopsy, Sanyi still feels mentally and physically anxious about the inspection report that "will come but has not come yet" sleepless nights" fear.
Sanyi admits that such emotions are sometimes more terrifying than the child's condition itself.
Sanyi remembers that on the day he received the diagnosis report three years ago, the three of them sat on the floor of the outpatient hall crying because they could not find a pharmacy in a strange hospital.
Later, she heard more heartbreaking stories. Some parents couldn't face the reality and chose to divorce or even disappear. The burden of saving their children was left to the other party; A serious lung infection occurred, money, housing, and people were gone... Qiu Xiang, the first director-general of "Golden Ribbon", said that the breakdown time of each leukemia child's family may be different, "but as long as you experience One will know what it's like to fall to the bottom and have nowhere to go."
Qiuxiang joined the "Golden Ribbon" preparatory group three months after her child died of leukemia.
Now, including her and Sanyi, the "Golden Ribbon" has a total of 11 directors, all of whom are parents of children.
Some of them had been unable to sleep for days and nights in order to find out why their children were sick, and they beat their heads while searching for information on the Internet; Some people believe in misinformation, and as a result, their children miss the best time for treatment and medication; some people are still active in WeChat groups after their children recover, donating money and medicines to the parents of newly arrived children.
Statistics show that leukemia is the most common malignant tumor in childhood.
In China, 4 out of every 100,000 children under the age of 15 will unfortunately be ill.
Specifically in Fujian Province, there are about 280 new cases of leukemia children every year.
In 2021, there will be 248 families with childhood leukemia who have received the "white treasure box" from the "Golden Ribbon".
"Everyone has a dozen stories, and sitting together can tell them for three days and three nights." Sanyi pointed to the photos on the wall of the station and said, "The purpose of our gathering is very simple, to pass on experience and strength to more people. Families of children with leukemia, let them not take the detours we have taken."
Holding a group to keep warm, this is not easy to do
In "Golden Ribbon", the child with leukemia is nicknamed "Little White".
Most "Xiao Bai"'s medical experiences are similar: they are admitted to the hospital and receive high-dose chemotherapy drugs, which will kill abnormal hematopoietic stem cells and tear apart "Xiao Bai"'s immune system; discharged from the hospital, waiting for healthy cells Proliferation while preventing infection; readmission, chemotherapy; discharge, wait...
"The average treatment cycle for childhood leukemia is two to three years. Few diseases can have such a long connection between patients and doctors, and between patients and patients." Zheng, deputy chief physician of the Department of Pediatric Hematology, Union Hospital Affiliated to Fujian Medical University Hao is one of the initiators of "Golden Ribbon," where more than 85 percent of childhood leukemia patients in the province see a doctor at the hospital where he works.
As far as Zheng Hao knows, at most, there are more than 300 families of children with leukemia living around the hospital at the same time, and there are less than 50 beds in the department - more than 200 children have to "walk for treatment" for a long time.
In addition to giving chemotherapy drugs and performing transplant operations, it is difficult for the existing medical resources to provide more help to the "Xiaobai" families who have suffered mentally and financially for a long time.
"Hugging together for warmth may be an auxiliary plan to win this 'white war'," Zheng Hao said.
The stone tables and chairs downstairs in the Pediatric Hematology Department of Xiehe Hospital were the meeting place for parents during the preparation of the "Golden Ribbon".
The first time we met, Zheng Hao and everyone said the first sentence: "This matter is not easy to do."
No funds, no places, no projects... In 2019, a box of children's leukemia nursing books donated from another mutual aid organization was the only asset of the "Golden Ribbon".
"Let's go, send a book to the new patient." Qiuxiang and Sanyi went to the ward for the first time to publicize, but they were kicked out by the parents of the child as "medical liars".
No one believes that "little white" parents who are overwhelmed by their children's serious illness can still have the leisure to "do charity".
Parents are not giving up.
They put up posters in the department, promoted it on the public account, and asked the doctors and nurses they knew to endorse the "Golden Ribbon".
Later, some parents of "Xiaobai" contacted mutual aid organizations in other provinces, and raised donations such as "white treasure boxes", children's wigs and other materials for distribution.
Gradually, parents of children began to ask someone: "Where can I find the 'Golden Ribbon'?"
When the "Golden Ribbon" was founded, Xiao Yuhong's child had just entered the "big maintenance" stage of oral chemotherapy drugs and had already returned to school, but this did not affect her signing up as soon as she learned the news.
Because of her business management experience, Xiao Yuhong was elected as the chairman of the "Golden Ribbon".
At that time, Xiao Yuhong had no idea how far such a mutual aid organization, which was maintained entirely by "little white" parents, could go.
In order to win the trust of more people, the parents decided to "settle down" the "Fujian Golden Ribbon" in the civil affairs department.
"When I went to the service window for the first time, a lot of questions were picked up." Xiao Yuhong said, "The organization's charter and service scope are not standardized, the name of the organization is easy to cause confusion, and almost no place is correct." In January 2020, After more than 3 months of twists and turns, the "Fujian Golden Ribbon Relief Public Welfare Service Center" has finally completed its registration with the province's Civil Affairs Department.
I thought that the most difficult hurdle was over, but I didn't expect to find a "home" for the "Golden Ribbon", which made the parents worry again.
First of all, it should be close enough to the hospital, and secondly, it should have a high floor, good ventilation, and sufficient sunlight.
The registered capital of "Golden Ribbon" is only 30,000 yuan, and it is also donated by parents and medical staff.
In order to rent a suitable house, Qiuxiang and Xiao Yuhong looked at all the available houses.
"Finally, there is a condition that the surrounding neighborhoods can accept families with children with leukemia from time to time." Qiuxiang remembers that sometimes she explained her intentions on WeChat, and some landlords put her on the blacklist. Not interested in business.
Growing up is never easy.
They are all fellow travelers, one can help one is one
Almost every Sunday afternoon, Lianliangsu will go to the "Golden Ribbon".
For nothing else, just to study with the parents of "Xiao Bai".
10 minutes of silence, self-introduction, reading in turn, sharing experiences... In the reading meeting, Lian Liangsu always sat in the corner and didn't talk much.
However, parents who often come to the book club know his story.
"Lao Lian is a coal miner in Sanming. Not long ago his child was diagnosed with leukemia, and he was also diagnosed with pneumoconiosis."
"The pneumoconiosis only cost more than 100,000 yuan, but the child has spent more than 500,000 yuan for treatment. Since last year, even my father has worked as a nurse in the ward to transport patients."
"Lao Lian didn't dare to run too fast, because he would cough and pant; but he didn't dare to do too little, because there was a huge gap in medical expenses."
...
Lian Liangsu didn't graduate from elementary school. "It was the first time I read, and I couldn't understand everything written in the book, but after listening to everyone's lectures, I seemed to understand a little bit." Lian Liangsu said, "It was too depressing in the hospital. Now, come out and read to get some air."
It’s not just Lian Liang who wants to take a breath. A survey report on families with childhood leukemia in Fujian Province shows that 77% of the respondents believe that the biggest difficulty they are facing now is not economic pressure but psychological pressure, and more than 80% suffer from it. Interviewers indicated that communicating with other parents of children can relieve anxiety.
From self-care to psychological relief, from parent-child relationship to positive acceptance, from wisdom cognition to death education... The "Golden Ribbon" two-hour reading club has held 80 sessions per week.
"This may be the lowest-cost way of decompression we can think of." Xiao Yuhong admitted that compared with professional non-profit organizations, the "Golden Ribbon" formed by the parents of "Xiaobai" can not do much.
"We may not be able to do great things, but we can help with empathy and care as much as we can."
During the new crown pneumonia epidemic, he made an appointment for a comprehensive physical examination for non-local parents, and helped the "Xiaobai" mother who was taking care of her child alone to go through the transfer procedures... Taking advantage of the time to take care of the child, Lian Liangsi will be a guest "Golden Ribbon" volunteer in the hospital.
He said that although everyone did not know each other, "we are all fellow travelers, and one can help one another."
In "Golden Ribbon", there are more than 1,200 "little white" parents like Lian Liangli, and the growth of this mutual aid organization has far exceeded Xiao Yuhong's expectations.
Since its establishment in 2020, a total of more than 300 families have stayed at the "Golden Ribbon" station for free, and the cumulative stay has exceeded 900 days; the institution has also provided consultation and psychological counseling services for 440 families with new diseases, and distributed 320 "Golden Ribbon" stations with a total value of 83,200 yuan. "White Treasure Box"; carried out 15 medical public welfare live broadcasts.
"Every 'Xiaobai' parent is the strength that the 'Golden Ribbon' relies on to maintain." Samik said, "Although there is not much we can do, there is still a lot we want to do."
One thought after another, one thought after another
Settling accounts is the most common thing Sanyi does apart from working on the "Golden Ribbon".
Sanyi used to do seafood business in his hometown.
Shooting short videos and running a public account can catch up with the trend of live broadcast and delivery, but the child is sick.
There is a saying in the "Xiaobai" circle: Transplantation is valuable, rejection is priceless.
"Imported medicines, experimental treatments, each of these expenditures can smash a big hole in ordinary families." Sanyi said.
The seafood business was suspended, and the family's savings were not enough to fill the hole.
In the year when the child was diagnosed, the 380,000 yuan raised by Sanyi on the serious illness fundraising platform was also spent on the day the treatment ended.
"Money is a number, and I have a deep understanding of the phrase 'Xiaobai' family."
In the "Golden Ribbon" parent group, most of the avatars have an exorbitant medical bill behind them.
Some families are not in good condition. The children finally got treatment, and the debts have not been repaid, and the disease has relapsed. In order to save money, some families of four live in a rental house of less than 20 square meters. Sleeping on the floor is two and a half years.
But that's it, every month, the "Golden Ribbon" account will continue to receive donations from the parents of "Xiaobai".
"If the family situation is not good, we will try to return it, but some parents can't persuade or stop it. Our 'internal friction' is too serious!" Sanyi said while checking the details of donations for the first quarter.
Similar "internal friction" also occurred in the live broadcast room of "Golden Ribbon".
The "Golden Ribbon" charity sale live broadcast room is located in the station.
A whiteboard marked with the fundraising record number is fixed behind the anchor, a fill light stands in front of the auction booth, and two "little white" parents wear gloves as volunteers, and take turns to display the auction items... A scene in early May At the public welfare auction, there were nearly 50 pieces of items listed with links.
The goods include tea and fruits grown by the "Xiaobai" family, handicrafts sent by doctors and nurses, and calligraphy and paintings donated by caring people.
Other live auctions limit the starting price, but the "Golden Ribbon" auction limits the maximum price.
As the host of the charity sale, Cuiqing, the parent of "Xiaobai", also has different words - "The price is almost there", "We can't increase the price, and we won't be able to get off work", "The premium is too much, it will be regarded as a missed auction" ...
Zheng Hao and well-known philanthropist Lin Weidong in Fujian are the supervisors of "Golden Ribbon" and "regular customers" at the charity sale.
While limiting the bids of parents, they bought some of the lots out of their own pockets, and then donated them to the "Golden Ribbon" and "Xiaobai" families.
Parents "internal friction" consumes more than just money.
Before the Spring Festival this year, Qiuxiang left the "Golden Ribbon" and resumed sales and investment promotion.
She said: "Leaving is to let myself go out and stop being trapped in painful memories."
After Qiuxiang left, Sanyi took over her job, changing from a part-time volunteer to a full-time charity worker.
Recently, she has been busy holding reading clubs, preparing for "June 1" activities, and sorting out internal affairs materials.
Her family advised her to go back to her hometown and find a profitable job to start over, but she was reluctant to leave.
She told her son that her mother was going to fight with children who were as sick as him.
Some people leave and others come, which is a common occurrence in this mutual aid organization.
On the one hand, Sanyi understands and supports Qiuxiang's decision, but on the other hand, he cannot be "open-minded" to himself.
In her opinion, her life has been divided into two since the day her child was diagnosed, and the days before the diagnosis faded in her memory. She wanted to add more color to her and her child's future memories.
"The creation of the 'Golden Ribbon' is just a small thought, but as long as one thought after another, the thought will continue."
"Xiaobai" can also give strength to others
"June 1" Children's Day is a "big day" for "little whites".
Every year, "Golden Ribbon" will openly solicit 20 leukemia children aged 0-14 who have entered the maintenance period, hold a "graduation" ceremony for them before and after Children's Day, and issue "Little Warrior" certificates.
This year, the Pediatric Hematology Department of Xiehe Hospital will join hands with the "Golden Ribbon" to live stream the "Graduation" ceremony online, and at the same time allow the "little warriors" to share their anti-cancer stories.
14-year-old Zhihan is one of the "little warriors" this time.
Diagnosed in 2012, treated in 2013, relapsed in 2016, and treated again in 2017... Her mother said that every time it was time for a bone marrow puncture, Zhihan would take a bag of snacks and climb up on her own while crying. On the hospital bed, hugging his knees, bending his body into a "perfect circle", and then said to the doctor: "You lighten up a little bit, and once it's all right, I'll give you something to eat."
"Tumor treatment has to go through a long process, each step is not easy, and each level is not easy to pass." At the reading meeting, Xiao Yuhong once shared the method of fighting fear and anxiety, "Children are our weakness, but in the face of disease , they can often teach us how to be strong.”
"I used to be a 'Xiaobai', and I hope all the 'Xiaobai' can overcome the disease." In May, Zhihan, who had returned to school, wrote a "completion" speech and gave it to Sanyi.
Sanyi forwarded her story to Bai Yang and Yaoyao, a girl who suffers from a rare blood disease Fanconi anemia and is waiting for a bone marrow transplant.
Starting this year, the recipients of the "Golden Ribbon" are no longer limited to children with leukemia, and other families with childhood tumors have also become the direction in which the ribbon will extend.
Until now, Sanyi still publishes his son's status from time to time on a page that has long stopped fundraising.
She said that at the beginning, 15,000 people retweeted her fundraising link, nearly 200 people proved her identity, and more than 10,000 people donated money for children.
"Now, I hope my 'Xiao Bai' can also give strength to others."
In March, Qiuxiang returned to the "Golden Ribbon" after learning that a volunteer had resigned.
The weekend before Children's Day, she stayed in the mountains for two days.
Standing on the viewing platform in Dashanli, she blocked the sun with her hands, took a group photo with Dashan, and sent it to the parent group.
The road behind Qiuxiang is rugged, obstructive and long; in front of her, the mountains are lush and full of life.
She wrote: "The road is where there is no road."
(At the request of the interviewee, part of the text is a pseudonym)