A ray of hope for cancer-stricken kids

The day after Valentine’s Day was World Child Cancer Day. Cancer can be a lonely disease in many ways. While a diagnosis of cancer is devastating for anyone, when the patient is a child it is even more poignant. Childhood cancers are not linked to lifestyle and nor do preventive checks help. A diagnosis means the loss of childhood and often a crippling expense to the family. A UK-based NGO called We Are Macmillan, which provides support and information to paediatric cancer patients, says that shock, fear and denial, anger and guilt are some of the common emotions that parents feel when their child is diagnosed.

In India, there are a few specialised cancer treatment centres with paediatric oncologists, mostly located in large cities. Consequently, parents of child cancer patients living in rural areas are compelled to bring them to the metros for treatment. Upon arrival, families face innumerable difficulties in the early days. They are bounced around meeting doctors, getting tests done and must learn to navigate the hospital and its complexities. Many do not speak the language, some are totally illiterate, and some are literate, but in another language. When the child begins chemotherapy, another reality hits them hard; they will need to stay in the city for 4-6 months. Given that they can’t stay at the hospital, accommodation is an added cost, along with the lack of support network to meet the needs that may range from donors for a blood transfusion, warm home-cooked food or just a sympathetic ear.

According to the US National Cancer Institute, “Research shows that help from others strengthens and encourages the child undergoing treatment and the family.” The increasing number of non-profits doing excellent work to support such families has made the journey easier. Even more heartening is that serious efforts are being made for various groups, many working in niche areas of nutrition, accommodation, financial support, to work together and not in silos. This has led to a fall in abandonment rates at hospitals like Tata Memorial in Mumbai from over 25 per cent to less than 5 per cent.

In the darkest time of their lives, many families are fortunate to forge a new community of love and support at St Jude India Childcare Centres, which offer free-of-cost hygienic, protective, nurturing environment that gives these children the best chance of beating cancer. At any given time, 400 families across five cities are given housing, transport and nutritional support; they can sleep easy knowing they aren’t alone. A uniquely inspiring sight is that of the children looking out for each other. Like in the case of Ayan Khan, a shy 14-year-old boy, who came from Balrampur, UP, to be treated for leukaemia and Aditya Rathaur, aged 12, from Gorakhpur, undergoing treatment for a malignant brain tumour. We are all united in the war against the enemy called cancer.

The author is fellow of the Union for International Cancer Control (UICC), Geneva, and CEO of St Jude’s Childcare Centre