A story worth telling
With a new drug or therapy development, it may bring a revolutionary change for children with cancer.”
Li Zhizhong, founder of Shiyu Children Foundation
A tale of parental persistence and personal willpower, coupled with a greater understanding of pediatric cancers and government initiatives to improve accessibility to treatment, is providing encouragement to families affected by the disease, Wang Qian reports.
After recovering for 27 years, liver cancer survivor Li Pengfei is on a mission to inspire others to beat the disease.
The 29-year-old man from Datong, Shanxi province, has joined various support groups on social media platforms to connect with people who are on a similar journey. Last year, he became a volunteer at the Shenzhen Shiyu Children Foundation, a nongovernmental organization focused on promoting awareness, patient education and drug discovery for pediatric cancers.
“I hope that by sharing my survival story, I can help more people,” Li says.
Li’s cancer journey began in 1995, when he was only 1 year old. The local hospital detected a mass in his liver through an X-ray and doctors suggested further tests at top hospitals in Beijing. Although some relatives began to accept giving up treatment as an option, Li’s parents took all their savings and decided to save their son’s life, no matter how far they had to go. In the coming three years, they had traveled many times between Datong and Beijing.
At Beijing No 301 Hospital, Li was diagnosed with hepatoblastoma, a type of pediatric liver cancer, and, due to the critical situation, a doctor recommended Zhang Jinzhe, chief physician at Beijing’s Children’s Hospital, to Li’s parents. Zhang suggested that he be treated with chemotherapy and when the tumor was under control, a surgery was possible. Although it meant a lot of money and a high risk of failure, Li’s parents forged ahead in a bid to save their son.
“I cannot imagine how much of a struggle it was and how much pressure my parents had endured, especially my mother who was just 22 years old at that time,” Li says with tears in his eyes.
“Luckily for me, the surgery was successful and I began to grow strong like other boys,” Li says. He spent his second birthday in hospital with a long scar on his abdomen.
Today Li is a 27-year liver cancer survivor who stays busy and positive. He got married in 2018 and his daughter was born one year later.
“People in a similar situation are surprised to learn my story, which brings hope to their life. I want to do more for them,” Li says.
A growing issue
Li’s experience illustrates both the hope and challenges that many pediatric cancer patients in China face.
Data from the Cancer Hospital of the Chinese Academy of Medical Sciences shows that recorded childhood (younger than 15) cancers in China rose from about 92 new cases per million children in 2001 to 115 per million in 2010.
Quoting Zhao Qiang from the National Health Commission’s expert committee on pediatric cancer, Xinhua News Agency reports that, every year, about 25,000 children in China under the age of 15 are diagnosed with cancer and that childhood cancer rates have increased by 2.8 percent every year.
The most common cancers in children are leukemia, lymphoma and brain tumors, Zhao says.
The latest National Pediatric Cancer Surveillance Annual Report, released by the National Center for Pediatric Cancer Surveillance in March, finds that hospitals in Beijing, Shanghai and Guangzhou, Guangdong province, are priorities for treatment of childhood cancers, reflecting the regional disparities in access to pediatric resources.
Cao Haixia, a pediatric physician from the Qinghai University Affiliated Hospital, from her own experience, agrees. Located in Xining, Northwest China’s Qinghai province, the hospital’s pediatric blood oncology unit started from scratch in the early 2000s, according to Cao.
She still remembers how helpless and frustrated she felt when a 12-yearold boy was diagnosed with leukemia in 1997 and there was nothing she could do.
“By then, most parents of such sick children had no choice but to go to top hospitals in big cities, or give up treatment,” Cao sighs. Her wish at that time was that one day these children could receive treatment in Qinghai.
The good news is that both the central and local governments have taken action to boost diagnoses and treatment rates for children with cancer in recent years.
Thanks to support and cooperation with top hospitals, Cao is happy to see that her unit has treated the tumors of about 20 children this year, none of whom needed to travel too far for diagnosis and treatment.
According to the National Health Commission’s press conference in June, besides the original 10, another 12 types of childhood cancers have been entered to medical insurance coverage this year. Last year, the hospital spending for each child with cancer decreased, on average, by about 11 percent compared with the level spent in the previous year.
Last year, the National Health Commission issued a notice about building five regional pediatric medical centers in across China. The centers will be based at leading children’s hospitals in Liaoning, Zhejiang, Guangdong, Shaanxi and Sichuan province, as well as Chongqing.
In coordination with the National Center for Children’s Health, the regional centers are expected to improve medical treatment, scientific research, and preventive health care, according to the commission.
In late 2019, the National Center for Pediatric Cancer Surveillance was established, under the auspices of Beijing Children’s Hospital, to monitor the country’s hospital-based childhood cancer patients. Data shows that children with certain types of leukemia now survive five years or more, according to Ni Xin, head of Beijing Children’s Hospital.
“The surveillance center provides scientific support for the authorities to develop strategies to prevent, control, and treat such diseases,” Ni said at a news conference held by the National Health Commission in June.
Knowledge brings hope
Li Zhizhong, founder of Shiyu Children foundation, echoes that China’s sample size of children with cancer is large enough for pediatric cancer research, which will be a boon to pediatric oncology experts, because a major barrier to largescale discovery and advancement in treatment of pediatric cancers is a lack of data and samples for study.
“Why our research in pediatric cancers is quite limited is that there is not enough communication between scientists, doctors and policymakers,” Li Zhizhong says, adding that Shiyu Children Foundation hopes to be built into such a platform for dialogue and cooperation — either to meet clinical demand or to conduct highquality research on childhood cancers — to serve the children with cancer.
It is also the main reason behind him quitting his job at Novartis Pharmaceuticals in the United States in 2018 to establish the foundation and advance China’s diagnosis and treatment level on pediatric cancers. The foundation has so far attracted more than 17,000 volunteers from home and abroad.
In 2020, the foundation cooperated with search engine Baidu to provide scientific information on 25 entries related to pediatric cancers. To cater to popular trends on social media platforms, it has also created short videos on related topics with Youlai Doctor, an online health consulting service that connects patients with specialist doctors.
On various occasions, Li Zhizhong has reiterated that cancer in children is very different from cancer in adults, involving different cancer types and occurring much less frequently.
Cancer is a leading cause of death for children, with at least 300,000 new cases diagnosed each year among children from birth to 19 years old, World Health Organization estimates. However in developed countries like the US, because of major treatment advances in recent decades, 84 percent of children with cancer now survive five years or more, compared with about 58 percent in the mid-1970s, according to the American Cancer Society. It indicates that diagnosis and treatment advances in pediatric cancers make a difference to survival rates.
“With a new drug or therapy development, it may bring a revolutionary change for children with cancer,” Li Zhizhong says, while urging parents of affected children not to give up.