On a sunny, winter morning, a group of about two dozen children, between the ages of three and 12, clap and recite poems along with an instructor in a courtyard outside the out-patients-department at the AIIMS, one of Asia’s largest research and referral hospitals. It’s that brief, transient tranquillity in a day fraught with pain and uncertainty. As they get busy, they momentarily forget that their parents have queued up outside a counter at the All India Institute of Medical Sciences (it treats about 10,000 patients every day) to take them through the traumatic and, often, painful drill of cancer detection and treatment.
For most of the young cancer patients, a bulk of whom are from other states, the congregation on the chattai, or simple reed mats, and related activities are the only pleasant memories they carry home after a painful day at the hospital. ‘I enjoy the fun activity here,’ Mohammed Rehan, 3, a resident of Alamganj in Bihar’s capital Patna, who has blood cancer, said. The young patient acknowledges the gains from the chattai ‘clinic’. Behind it is the complex exercise of relaxation and group therapies, along with motivational and self-esteem modules, prepared by volunteers and the education team of NGO Cankids Kidscan.
Saloni, 6, suffering from throat cancer, is also a regular at the chattai meetings during visits to the hospital from her house in Delhi’s Shalimar Bagh neighbourhood. ‘Papa takes me to doctor inside when my turn comes; till then I spend time here,’ Saloni, whose father is a driver, said. The two bravehearts fighting cancer are not alone. There are many others like them who attend about seven weekly chattai sessions catering to 300 children outside several cancer OPDs at AIIMS.
Poonam Bagai, chairperson of Cankids, told IANS: ‘Our chattai sessions are in the open intentionally, as we want to create awareness and invite public inquiries.’ ‘One aspect of the exercise is to distract the child from the sometimes painful treatment drill and impart some craft and learning skills,’ she said.
‘A child breathes easy when he is away from the ward where he is forced to see other cancer patients in suffering,’ said the head of Cankids, herself a cancer survivor. The NGO engages teachers to impart informal education and skills during the children’s period of treatment. This, in particular, helps reintegration into schooling and society generally, once treatment is completed. The NGO offers emotional support to patients’ parents and extends financial assistance for their treatment.
As Manoj Kumar Gujela, Cankids’ senior programme officer, put it: ‘No child should suffer for want of treatment because of lack of finance.’ Bagai, the brain behind the arrangement with the AIIMS’ authorities for helping cancer-afflicted kids, said similar arrangements were being put in place in 29 cancer centres across the country. According to a 2009 article in Indian Journal of Cancer, childhood cancer contributes to less than five percent of the total cancer burden in India, with approximately 45,000 children diagnosed with cancer every year. In developed countries, 80 to 95 percent of children with cancer are cured.
Many of the volunteers are themselves survivors or parents of kids who overcame the disease or lost the battle against it while being supported by the NGO. They are a part of the NGO’s Parent Support Group (PSG) and are empowered to become skilled advocates and navigators – who help patients during their hospital visits, Bagai said.
Sandhya Prashar, mother of Vedant, 15, who survived stomach cancer four years ago, still remembers the help she received from Cankids during her family’s ordeal. ‘Now we take the patient’s family members through the complicated procedures of obtaining treatment at the hospital and save them from getting lost in a maze,’ Prashar told IANS. Kapil Chawla, 29, who fought cancer in the neck over a decade ago, now serves the organisation as a regular volunteer. He like many other teenagers and young adult survivors have formed KidsCan Konnect – a group of childhood cancer ambassadors. ‘I joined them as I realise the importance of the effort that goes into making the kids comfortable,’ said the resident of east Delhi, who prepares modules for spreading awareness among patients and society.
Also read: War on Cancer