PUDUCHERRY: Little did Mangala, parent of an 11-year-old boy from Kolkata, know that her pursuit of a cure for cancer would lead her to an abode of support miles away in Puducherry. When she walked into Shine Home, a couple of kilometres off the Regional Cancer Centre at Jawaharlal Institute of Postgraduate Medical Education & Research (JIPMER), she was still staring at a hazy future.
Mangala’s son has been battling leukaemia, a type of blood cancer, for nearly two years. What forced the family to shift his treatment to the RCC from a private hospital back home were two factors: financial constraints and the absence of a support system. As they went through the most trying time of their life, the family found warmth at the home, which has hosted 22 such children and their families over five years.
“My family runs on the meagre income of my husband, who is a supplier of confectionaries and household items to a bunk shop. We were forced to come to Puducherry. Not only do we have a place to stay and tend to my son’s treatment, but we are able to provide nutritional food to him,” says Mangala.
A large number of such families, mostly from southern states, has sought refuge at the care home, run by an NGO, Joy and Light, supervised by N Satheesh. Though the treatment at RCC is free, it’s the prolonged nature of treatment, cost of accommodation and loss of income due to migration that leave the families in the lurch.
“When medicines are unavailable in JIPMER, we are told to buy it through our own means. When it becomes difficult for us to afford them, Satheesh sir steps in and helps us to procure them,” says Padmavathi, another inmate, a single mother of a 17-year-old boy who is diagnosed with cancer. For Preethi (24), a young mother from Bengaluru, the home is all her hope to save her 18-month-old child. “We came here as we could not afford the cost of surgery. Now, with all of these people here, I am hoping for a cure for my baby,” she says.
Satheesh underlines the importance of an institutional healthcare to these patients. “I was accompanying my father for treatment at JIPMER when I saw the plight of the families. They were lodged in the waiting area where there was a huge risk of infection and a lack of security. I knew the parents found it difficult to provide nutritional food and treatment to the children,” he says.
He adds that the community bonding between the children has added to their fighting spirits. “They experience loss of hair, physical pain, and loss of appetite among other things. But the bond helps them transcend the pain. Two girls from Erode and Thanjavur struck a chord with each other. They now study together and are hoping to write the 12th exam side-by-side,” he says. To ensure the nutritional needs of the children, a Delhi-based organisation CANKID is assisting the home with a dietician.
According to oncologists in JIPMER, the patients need to stay in Puducherry for one to six months, and in some cases such as Acute lymphoblastic leukaemia, it can stretch up to even two years. As JIPMER admits only those paediatric patients who are critical, others have to fend for themselves, which burdens families with responsibilities.
“With these facilities improving the standard of living among patients, it has reduced patients dropping out from treatment and helped in curing infections acquired from the hospital, thereby bringing down the number of deaths. Data shows the dropout rate in JIPMER has seen a drastic slump from 20-25% five years ago to a mere 8% in 2019,” they add.
Former JIPMER Director Dr SC Parija, who inaugurated the home in 2017, says the NGO has come as a blessing for those seeking companionship in fighting the deadly disease. “It gives basic necessities for livelihood and more, including psycho-social development and support for continuing education during the course of the treatment,” she says.
Satheesh adds, “The chances of survival have increased as they are staying in a hygienic place, and secondly, they are not dropping out because they have a place to stay with free food and support to take them for treatment. The cure rate is currently around 55%-60%.” He is now planning to accommodate more patients, including those with cases of relapse, in a more spacious home.