“Treating children with cancer has taught me so much about life.”
A Nutritionist from Srinagar shares how healing a 3-year-old has made her more agile.
Cancer interrupts life in many ways for patients of all ages, but for children making sense of this turmoil, it is especially difficult. Making children stick to the prescribed treatment requires strength, resilience and patience from the caregivers too.
This is the story of three-year-old Syed Burhan who was diagnosed with Leukaemia in November, 2019. Syed belongs to Handwara, a town in the Kupwara District of Jammu and Kashmir, India. This Class I student had to relocate to Srinagar to undergo treatment at SKIMS, Srinagar with his parents, leaving behind a younger brother and sister. There is very little age difference between the three siblings, and hence the bond between them was very strong.
For young children, while the physical demands of cancer are immense, a change in interpersonal relationships that were once a source of joy adds to their discomfort. “I have been working with children for almost four years, and I have realised that one needs to be sensitive to the mental landscape of a child to be able to motivate her to follow the treatment. Half the battle is won when parents and the medical team tending to children have an agile mindset,” says Khushnuma, our Nutritionist at SKIMS.
For Syed, it will take almost six months, the time to complete his treatment, before his life returns to some sort of normalcy. A normal life for Syed also meant watching science fiction cartoon shows which inspire him to become a scientist who finds solutions to our societal problems. His father, Shukur, who is a teacher, is also instrumental in motivating Syed to have a humanitarian stance. “Surviving this disease is a huge strain on the best of people, but willpower can make it easy. My only piece of advice to people who are outsiders to this crisis is to be sensitive about the space a family might require during this time. Cancer compromises the immunity of children and so by choosing not to visit them in hospitals, you are actually helping them,” informs Shukur.
“Apart from the physical risk, understandably the chemotherapy has taken a toll on Syed’s temperament and it is sometimes uncomfortable for him to meet relatives,” adds Shukur. Nausea, moodiness and the general disinterest in things are common side-effects of chemotherapy. “Many a time, these side-effects make it difficult for children to eat and digest food. The Cuddles Ration Program goes beyond just prescribing the right food and nutrients. I also spend a lot of time counselling and motivating the children to follow through. One has to be extremely imaginative in being able to convince Syed to have the right food, at the right time,” says Khushnuma who believes that building a relationship with the parents and children makes life easier for everyone. Most of all, it can save a life.
Shukur is touched by how the entire medical team goes above and beyond with their work. “The humility and the kindness of the doctors makes a big difference. I am also thankful to Cuddles for supporting us with ration every month, for all the supplementary drawing materials and for always being a call away when in need.”