CANCER POSTS BY BENITA SEN

This article has been published in Hindu Business Line
Link: http://www.blonnet.com/life/2007/07/20/stories/2007072050020100.htm
Friends against cancer
From cheering up the waiting-room hours to funding treatment for those in need, CanKids… KidsCan is a true friend to those coming to terms with childhood cancers.
"They are doing wonderful work. They don’t get lost in formalities and are always willing to adapt to whatever help a child needs. They are a one-stop support system for the entire family.”
Benita Sen In good company: Members of CanKids... KidsCan organise fun and learning activities for parents and children while they wait to meet the doctor at cancer treatment centres
Benita Sen
It’s an unusual bookshelf. Titles include Mary Has a Brain Tumour, Tickle Tabitha’s Cancer-tankerous Mommy and What About Me? When Brothers and Sisters Get Sick. Who are these books for? On a stifling summer day, there’s a buzz under the portico of the Institute Rotary Cancer Hospital at the All India Institute of Medical Sciences, Delhi. Amongst stretchers with patients too feeble to sit up, more p atients curled up on the floor, worried relatives and dozens more awaiting their turn to meet the doctor, this corner’s bustling. A play is about to be staged! A group of volunteers — some cancer survivors and some mothers of children who have had cancer — cheer on the bright-eyed actors, all of them children diagnosed with cancer, as they enact the story of a seed germinating.
This is the work of CanKids… KidsCan, a non-profit organisation founded by Poonam Bagai, a cancer survivor, and devoted to children and their families combating cancer.
“Carpe Diem! Seize the day,” exults Poonam repeatedly, hugging and kissing the children, and proving that joy can be contagious. CanKids’ work involves facilitating the best possible treatment, helping build bridge s between medical professionals and the families, providing a happy and cheerful environment at treatment centres and sharing information, experiences and access to advances in treatment from all over the world. Gift of life
Poonam Bagai
But why only children? About six years ago, when her sons were seven and three, Poonam was diagnosed with cancer of the colon. When she went into remission, she believed she had been given the gift of life for her children. And for children who, like her, had been diagnosed with cancer. “If ever anyone can remind you that life is worth living, it is children,” says Poonam.
Unlike adults, children are often diagnosed with cancer when the disease is at a more advanced stage. For each adult diagnosed with cancer at an advanced stage, there are four children. Even as the medical fraternity and the media caution adults to cut back on lifestyle factors that cause cancer, the causes of childhood cancers are virtually unknown. Returning to India after her treatment, Poonam gave up her job with the Indian Railways and volunteered with CanSupport and Cancer Sahyog, two organisations that reach out with support for cancer patients and their families.
In January 2004, in the basement of her parents’ home, Poonam started CanKids as a unit of the Mumbai-headquartered Indian Cancer Society and a member of the International Confederation of Childhood Cancer Parents Organisations (ICCCPO).
Through the week, CanKids workers go to major cancer centres in the city including AIIMS, Rajiv Gandhi Cancer Hospital and Apollo Hospital. At AIIMS, they spread out to cover several departments dealing with cancer, including haematology and paediatric wards and the two ‘dharamshalas’.
Four teachers, three of whom are qualified and one is a cancer survivor, hold activity clinics outside these centres. One of the teachers is the parent of a child with cancer. The activity centres create bonds among parents connected by concern, and the presence of survivors gives them hope and strength. The children are kept busy and happy during the long wait for their turn. Informal schooling
As cancer and its treatment can be debilitating, leaving the patient vulnerable to infections, several children drop out of school during the treatment. Traumatised by a life-threatening disease, such children are often low on self-esteem. The activity centre helps them keep in touch with studies through informal learning, while the crafts sessions provide an outlet for their creativity. And who doesn’t love a hearty song and a snazzy poem?
“The challenge is to keep them learning, their minds active and positive and their spirits happy, to help build self-esteem and confidence,” says Poonam. Once the child is ready to return to school, CanKids is at hand to ease the process of readmission. Those who cannot afford home tutors are given financial assistance. Needy parents are given Rs 5,000 a year against bills. And wherever a return to school is not possible, CanKids… KidsCan facilitates reintegration alternatives such as vocational courses.Counselling… and celebrating
Doctors have been requested to guide needy parents to the organisation, to help ensure no child goes without treatment for want of funds. To date, CanKids has assisted over 800 children and is convinced from the “fabulous donor response” to its Adopt a Child programme in India and abroad that “we live in a giving society”. It works with the Health Ministry and the Prime Minister’s Relief Fund to facilitate governmental assistance. “Funding is vital in a country where cancer treatment is so expensive,” points out Poonam. To date, they have dispensed about Rs 1 crore towards medical assistance, including bone marrow transplants.
Wherever possible, families are counselled to enable themselves in every way and provided emotional and psychological support.
When the motto is to live life to the fullest, birthdays turn extra special. They are celebrated twice a month at Haven, the CanKids office, with gifts and cake. Diwali is the time for the Wish Cards programme where wishes expressed by the children are granted. For some of the bigger wishes, CanKids has tied up with the Make A Wish Foundation.
One of the most crucial bridges it builds is through ACT or the After Cancer Treatment programme for survivors, with the monitoring of long-term side effects. CanKids keeps in touch with the children and their families even after the hospital visits are over. Palliative care for pain relief is another important aspect of its work. And wherever the cancer wins the battle, it is again time to reach out… with bereavement counselling.
True friend in need
As a resource centre, CanKids disseminates information on cancer, prints and translates related books, and stocks many good titles in its library.
And its work has won admiration all around. Says Dr Amita Mahajan, senior consultant, paediatric oncology, Indraprasth Apollo hospital, “They are doing wonderful work. They don’t get lost in bureaucratic hassles and are always willing to adapt to whatever help a child needs. They are a one-stop support system for the entire family.”
Sheila, who lost her son three years ago to cancer and is now a volunteer, points out how CanKids has improved things. “I come here because I see my son in these children,” she says, “And also so that no child and no family go through what we did, with no idea of where to get funds for the treatment. Some families are even given medicines.” Another mother returning to Patna requests a chapter there. CanKids is ready with advice.
Worldwide about 250,000 children get cancer each year. In countries where detection is early, up to 70 per cent of the children get cured. In India, we still lose about 70 per cent of children to cancer. CanKids strives to turn those figures around, spreading awareness, helping doctors with patient and family compliance and continuation. As a recent media release from the International Society of Paediatric Oncologists and International Confederation of Childhood Cancer Parents Organisations points out, “Most childhood cancers are highly treatable, provided prompt and effective treatment is accessible.”
And every day, CanKids spreads the message of Carpe Diem. Seize the day. In fact, grab the moment!
Helping hands
A cross-section of organisations countrywide that reach out to people with cancer:
Indian Cancer Society, Delhi and Mumbai
CanSupport, Delhi
Cancer Sahyog, Delhi
Can Stop, Chennai
V Care, Mumbai
Cancer Patients Aids Association (CPAA), New Delhi and Mumbai
Sahayata Cancer Sahyog, Chandigarh
Hitaishini, Kolkata