WHEN NAZIA Akhtar came to Mumbai’s St Jude ChildCare Centres in 2006, she was the second patient, and the first girl, to be admitted into the residential facility for paediatric cancer patients seeking treatment at the Tata Memorial Hospital (TMH). Nikhil, who had a brain tumour, was in Room No 1, and Nazia, diagnosed the previous year with osteosarcoma in the knee, was in Room No 2.
“Nikhil didn’t make it,” says Nazia’s father Syed Nadeem Akhtar, who runs a small electrical goods store in Bihar’s West Champaran, eyes moist at the thought of Nikhil and his family, his daughter’s successful battle with cancer that much more meaningful with the knowledge of another parent’s tragedy. Nazia, whose left leg had to be amputated at the knee, is now almost 20, has completed a paramedical course and is waiting to find a job.
Nazia and her parents were among 20 families from across north and east India who gathered at St Jude’s Cotton Green campus this weekend for their first ever reunion.
These 20 are among thousands of families who have lived at some time in St Jude’s spotless facilities where children being treated at TMH are offered accommodation, at no cost, during the entire course of the treatment, often running into many months.
Now 12 years old, St Jude India ChildCare Centres currently runs 18 centres in Mumbai, Delhi, Kolkata, Hyderabad and Jaipur, all of them offering, besides safe living space, also weekly rations, an individual stovetop and cooking gas for every family, transportation to the hospital as well as counselling, educational and recreational activities.
It was in 2006 that Akhtar befriended Devika Biswas’s father Sameer, a small trader from Kolkata who had never heard the words Acute Lymphocytic Leukemia until Devika was diagnosed with it. “We actually stay in touch on a WhatsApp group, over 25 parents whose children were treated in the first couple of years after the centre was established,” says Sameer. “This was not just a free living space, it was also a family where others shared similar pressures.” While the parents and the children themselves stay in touch, this weekend was the first time they all met together after a gap of 10-11 years.
Usha Banerji, CEO of St Jude India ChildCare Centres, where over 16,000 admissions have been recorded so far, says, “Our first children of 2006 hold a very special place in our hearts and we have watched their progress with interest. The children have of course been coming over the years for a follow-up, but they are excited at meeting all the others who were with them here, an alumni get-together.”
The boys and girls, now in their late teens and early 20s, are a boisterous lot, keen to tell the current residents at St Jude that not only is there life after surviving cancer, but there’s also laughter, songs, movies and poor jokes – “a completely normal youngster’s life” as Rashmi Sengupta, 17, says. The Agartala girl had a long stay, having been cured of rhabdomyosarcoma in 2009 only to suffer a relapse in 2011. “I’m studying in Class XI now,” she says, laughing the loudest when somebody recounts her desire to be a model even when she was almost bald after chemotherapy.
Oncologists say childhood cancers are highly curable if circumstances don’t cause treatment to be stopped midway. So St Jude’s role in offering a physical living space and emotional support is critical, the parents agree. Then there are the tips the young former patients share.
When the father of a current patient asks whether they too experienced bad temper during chemotherapy, Nazia responds. “I’d begun to see my parents as my enemies, forever lecturing me on what to do. But my dad’s smile would match the size of my anger, he’d come up with a new game to play everyday, a new method of making me eat, a new joke. That’s what you should do too.”