Only a few decades ago, all the main characters of soppy films and dramas were leukemia patients. (Older generations may bring to mind the terminally ill heroine of “Love Story,” a 1970s novel and film.)

“Nobody makes such movies or soap operas now. Ordinary people also know leukemia is not an incurable disease,” Professor Chung Nack-gyun says.

Still, the disease is hard to bear for patients, not least because the treatment can lead to long-term side effects. This is something that even adult patients have a hard time dealing with. When it comes to pediatric leukemia patients, the diagnosis can have a significant impact throughout their lives.

Add to this the rapidly falling number of pediatricians in Korea, and one can imagine difficulties facing children with chronic disease. Fortunately, some large hospitals have been improving treatments and various other care services for young leukemia patients. A case in point is the Children’s Hemato-Oncology Center at St. Mary’s Seoul Hospital.

Professor Chung is the center’s director.

In a recent interview with Korea Biomedical Review, Chung estimated that there are about 10,000 childhood leukemia patients in Korea.

"The nation also sees about 400 children newly diagnosed with leukemia each year," he said. "It is widespread cancer among children, accounting for one-third of all childhood cancer."

The survival rate differs depending on the leukemia type. For instance, in the case of acute lymphoblastic leukemia, the most common childhood leukemia, Chung noted that eight out of 10 patients currently survive worldwide.

"However, St. Mary's Seoul Hospital records a higher survival rate of about 90 percent," he said. "This has become possible because the hospital carries out treatment by identifying risk factors for leukemia and adjusting the treatment intensity according to the risk group."

Aside from the rise in survival rate, Professor Chung remains concerned about issues the local medical community needs to resolve.

"Unlike cancers that adults suffer, pediatric cancers, including leukemia, are very rare," he said. "Because there are not many patients, it is difficult to recruit subjects for clinical trials, and it takes a long time to verify the efficacy of a new drug."

More problematic, even when a new drug is developed that works faster and has fewer side effects than existing drugs, local hospitals cannot use many of such new medicines due to the lack of insurance benefits, he added.

"So, we often have to use other drugs that have reimbursement, but some children show severe side effects, such as vomiting and excruciating pain in their limbs," he said. "While we have no choice but to use the medicine, it hurts my heart to see the children in so much pain."

Hospice palliative care is as critical as treatment

Because it is difficult to predict the course of severe diseases in children and adolescents, the World Health Organization (WHO) recommends providing both treatment and palliative care from the time of diagnosis.

"In Korea, about 130,000 children need palliative care every year, and about 1,000 of them die every year," Chung said.

That explains why St. Mary's Hospital started a pilot program of hospice palliative care service for pediatric patients named "Solsolbaram," a Korean word roughly translated into a gentle breeze.

"Currently, nine Korean hospitals conduct a palliative care pilot project, and each hospital is providing services with a specialized name," he said. "The reason we named our program Solsolbaram was to alleviate the negative image of palliative care, as many people tend to think it is just the end-of-life care. We hoped that patients and their families who need more care could use the service.”

As the disease’s progress, including childhood cancer, varies in children and adolescents, and the prognosis is hard to predict in many cases, Solsolbaram provides care services to patients and their families regardless of the stage of disease progression from the time the patient receives the diagnosis, he explained.

Chung stressed that having a diagnosis like leukemia puts a lot of stress on patients and their parents.

"As hematological oncology pediatricians are busy with treatment, there is a limit to getting deeply involved and showing interest in the emotional aspects of these patients and their families," he said. "It has been my dream for a long time to have a system where professionally trained palliative care specialists, psychiatrists, social work teams, and nurses work together to provide such support."

Chung said he sincerely hopes that the pilot project will be expanded to all hospitals.

Foreign patient-friendly medical institution

Although not many patients with leukemia come from overseas, the hospital has received patients who need hematopoietic stem cell transplantation.

"Most of the requests came from the United Arab Emirates (UAE), as they requested the hematopoietic stem cell transplantation due to erythrocyte diseases, such as thalassemia and sickle cell anemia," Professor Chung said, adding that St. Mary's Seoul Hospital provides exceptional care for international patients.

"When foreign patients visit the hospital, our International Medical Center provides various supports," Chung said. "When the UAE patients came for the first time, I thoroughly prepared in advance."

He added that there were many things to consider and prepare, such as safe transfer from the airport to the hospital, cooperation of the nutrition team as the patients were from a different culinary culture, interpretation service, and the connection of accommodation during the stay.

Chung added that various teams within the hospital cooperated with such factors in mind.

"Parents with sick children are same everywhere," Chung recalled. "Although it took the medical staff twice more time to explain the treatment procedure, foreign patients and their parents seemed to feel our sincerity in explaining the procedure and seeking their understanding and cooperation."

Korea needs more pediatric doctors

Asked what made him specialize in pediatrics, Professor Chung recalled his school days.

“One day, before a critical exam, my friends and I sorted out similar questions in previous tests, and I was responsible for the pediatrics area,” he said. “Later, when I was an intern, I had difficulties deciding what to major in. Then, Professor Chung Dae-cheol, the current director of the pediatrics department, came to me and advised me to specialize in pediatrics.”

The renowned pediatrician said he gets a lot of positive energy from childhood patients who seldom lose their smiles and show gratitude after completing the treatment.

"It's very rewarding to see them grow up healthy, and it's hard to describe in words the feeling you get from seeing them get married and have children later," he said.

Chung said he knew many medical students hesitate to select the pediatrics department, as the work is very tough with lots of burdensome emergency care.

"However, unlike adults, children spring back to life if you help them overcome the crisis. "Amid the dwindling pediatric population and the Covid-19 pandemic, now may be a good time to consider majoring in the pediatrics department."