The DECAN-Child project, conducted in partnership with B.P. Koirala Memorial Cancer Hospital, Nepal’s largest public cancer hospital, has been following up a group of paediatric patients with cancer and their caregivers. Among the patients is Hira Devi Gurung’s son, Prince, whose journey highlights the challenges that many families face in accessing timely and effective cancer care.
Hira Devi Gurung, a 35-year-old mother in Pokhara, central Nepal
My name is Hira Devi Gurung. I come from a lower-class family. I am a homemaker, and my husband works as a security guard for a private company. Our home is in the Lamjung District, but we live in a rented house in Pokhara due to my husband’s job and our son’s education.
When our son, Prince, was diagnosed with cancer, it was devastating. As a modest family, arranging the money needed for his treatment was extremely difficult.
It all started when Prince began complaining about leg pain. We immediately took him to the nearest health facility, where the doctor referred us to a cancer hospital. His treatment began without delay, but the journey was filled with many challenges.
When we first arrived at the hospital, the doctor asked my son to wait outside the outpatient department and then told me that he had osteosarcoma, a type of bone cancer. They explained the treatment plan, which included chemotherapy and surgery.
During the diagnosis and treatment period, my daily life revolved entirely around my son. His weight dropped drastically, from 24 kg to 18 kg. I spent all my time feeding, cleaning, and comforting him. He cried through the night because of the pain, and I stayed awake to soothe him. I barely had time to eat or rest.
Emotionally, I felt incredibly weak. I often cried, wondering why this had happened to my son, but I tried to stay strong for him. My family supported me, and the doctors and nurses helped us stay hopeful by explaining the side-effects of chemotherapy. My husband and I leaned on each other emotionally, determined to be strong for our son.
At first, I thought cancer only affected adults, but when I saw so many children battling cancer in the hospital, I realized we were not alone. This gave me strength and hope that Prince would recover.
Before his surgery, he received neoadjuvant chemotherapy, and after the operation, he underwent adjuvant chemotherapy. Just hearing the word “chemotherapy” terrified him. He frequently vomited, sometimes even vomiting blood, lost his hair, suffered from severe headaches, and ran high fevers. He often cried, saying, “I wish I didn’t have to go to the hospital.” Watching him suffer was heart-breaking. As his condition worsened, I couldn’t stop worrying, “What if he doesn’t get better?” These thoughts filled me with anxiety.
For his treatment, we left our home and stayed in Chitwan for five or six months. At times, his condition became so critical that he had to be admitted to the emergency room. We faced many challenges at the hospital: delayed test reports, long queues, and the need for daily blood tests. Sometimes his blood count was too low, delaying his treatment.
Finally, when the doctor told us, “You only need to come for follow-ups now,” we felt an immense sense of relief. We began to hope that Prince would fully recover.
After the surgery, a steel implant was placed in his leg, which meant he could no longer move as freely as before. He loved playing, but now he couldn’t run or play as he used to. When we brought him home, we supported him as he learned to walk again and made sure he attended physiotherapy sessions. Over time, his health gradually improved.
However, even now, whenever he says he feels pain or discomfort, we immediately worry that something might be wrong.
My family supported us both financially and emotionally. My husband even left his job for three months to care for our son. It was a difficult time, especially managing expenses and travelling long distances on poor roads for treatment. Without health insurance, we had to bear all the medical costs ourselves, which put us under severe financial strain.
Through this experience, I’ve realized how crucial it would be to have cancer hospitals in every province or district that could hire cancer specialists, but also to improve road infrastructure to ease the travel to the hospital and to ensure that local hospitals have the necessary medicines. If these changes could be made, cancer treatment and care would become more accessible, significantly easing the burden on patients and their families.
Prince Gurung, Hira Devi’s son, a 12-year-old patient with cancer, diagnosed at age 9 years
My name is Prince Gurung. When I first went to the cancer hospital for treatment, I didn’t know I had cancer. It was only after arriving there that I learned about my diagnosis. The news shocked me. I felt scared and overwhelmed, wondering, “What will happen to me?”
I asked my mom about cancer more than I asked the doctors. She reassured me, saying, “Don’t worry; this disease can be cured.” Before my treatment began, the doctors explained the side-effects of chemotherapy, including hair loss. When my chemotherapy started, my hair began to fall out, and it made me feel terrible. Seeing my distress, my mom gave me a cap to wear; she couldn’t bear to see me like that.
The pain from chemotherapy often made me cry. I was emotionally fragile and terrified of needles. Just hearing that it was time for my next session filled me with anxiety. Throughout the treatment, my mom took care of everything. I couldn’t even walk properly. She fed me, helped me sleep, and looked after me in every way. Sometimes I felt hungry, but the fear of vomiting stopped me from eating.
After three chemotherapy sessions, it was time for my surgery. I was extremely scared and asked the doctor, “Will I get better?” I even pleaded with him to make sure the surgery was successful. When he reassured me, I felt a little relieved.
After the surgery, I had three more chemotherapy sessions to go. Those were just as difficult. I experienced severe symptoms: vomiting blood, intense headaches, and extreme sensitivity to noise. Even the slightest sound irritated me. I didn’t want visitors because I felt constantly exhausted and annoyed. At times I thought, “It would be better to die than to suffer like this.”
Finally, when I was discharged and returned home, I felt a deep sense of relief. Being away from needles, hospital beds, and the constant noise brought me peace. At home, I spent my time playing games and watching TV, which helped me feel normal again.
After completing my treatment, I no longer needed to go back to the hospital, which made me incredibly happy. Ten months later, I finally returned to school. At first, I was nervous. “How will my friends treat me? Will they see me differently?” But my worries faded when they welcomed me with open arms. They carried my bag, helped me walk, and supported me in class.
Even now, I sometimes feel sad that I can’t ride a bicycle or play football like before. These limitations make me feel weaker than others. But despite everything, I am grateful. I received treatment in time, and I survived.