Setu Kumari Khadka was born in Nepal in 1989 to much celebration, as the first daughter born into her family after several generations. Setu remembers being weak and having health issues as a child and having to be taken to Mumbai, India for diagnosis and hospitalized there. No cause for her weakness came out of this visit. Setu found herself continuing to have health issues and even had to discontinue school briefly before finally completing high school due mainly to the determination of her parents who believed strongly in education.
By late 2004, Setu was not getting any better. At the suggestion of an uncle working for a doctor in Lucknow, India, they traveled to India but could not get an appointment with the doctor.
Setu and her family managed to get an appointment however with Dr. Tripathi, who worked at Maharajganj District Government Hospital in Lucknow, India instead. Following tests, Setu was diagnosed with Chronic Myeloid Leukemia (CML). She was started on medication without being aware of her diagnosis, her father chose to keep the diagnosis from her.
Setu had to travel to India for follow-ups and medicines. During a bout of extreme weakness, Setu had to be admitted to a hospital during one of her India visits. Her family soon started having financial problems. While Setu’s father was able to pay for her medicines for a while, he could not continue doing so indefinitely and had to sell his property to enable Setu to continue treatment.
This was the time, Setu had to briefly discontinue school as her family could no longer afford to finance both her education and her treatment.
Based on Dr. Tripathi’s strong recommendation, Setu was able to get both the BCR ABL and CBC tests for free. Setu’s health gradually improved and despite serious family financial problems, she completed school and even went on to college. Setu recalls her college years as carefree, she made friends while continuing her medication that her family managed to purchase with difficulty. She did not share her diagnosis with friends.
She was eventually referred to Dr. Gyan Kayastha at Patan Hospital in Nepal by Dr. Tripathi. In October 2016, Setu and her family met Dr. Gyan and no longer needed to travel to India for her checkups and medicines. Dr, Kayastha informed Setu and her family about The Max Foundation, and soon enrolled her in the MAS program.
She started visiting Patan Hospital regularly staying at the home of a relative while in Patan. At this time, she had to suffer the indignity of being treated as an outcast due to the firmly held belief in rural Nepal that people suffering from Cancer and HIV should not even be touched for fear of infection and contagion. Everything that Setu touched was washed by her relatives.
Shortly thereafter, Setu found a job as a receptionist working with one of her uncles and was fortunate to continue working here for four years while continuing her treatment. With savings from this job, she rented a room all the while continuing to have ongoing health issues. At times, despair at her continuing weakness took over leading her to feel suicidal.
The point at which Setu’s life took on new meaning came in in 2019, during a visit to Dr. Gyan Kayastha who offered Setu a position at the Nepal Korea Hospital. It has now been three years since she started working at the hospital in the insurance department, and her life has changed for the better. She now meets patients in the same situation and sees how grateful they are at being given a chance to live lives of relative normalcy. Setu now wants to live for these patients. From feeling hopeless, Setu’s life today is one of hope – even spending her free time making short Tik Tok videos!