Supporting families in India

Huma Anis, Psychologist, New Delhi, India

Every year there are 30–40,000 new cases of childhood cancer in India. Although worldwide, 70–80% of children with cancer can be successfully treated, the sad fact is that in India, it is estimated that nearly 70–80% children die of cancer, due largely to late diagnosis and detection, and the exorbitant cost of treatment.

When a young person is diagnosed and treated for cancer, both patient and family enter the complex and often frightening world of modern medicine. Hospitals and major medical centers can be vast and confusing places with seemingly endless corridors and multiple buildings. Hospital rooms can be drab and scary. Many professionals have questions, tests to perform, and information to give. The language can seem foreign and the terms used unfamiliar. There are endless forms to be completed. The schedules and routines of daily family life are changed to accommodate a difficult treatment plan. Family members are separated as one parent returns to work and siblings attend school. Siblings often feel very neglected, especially in our country where the number of cancer care centers are few and parents often travel with their sick child for treatment to the big cities, leaving their other children in the care of relatives or sometimes even on their own, as they stay away for long periods of treatment.

At times like this information, awareness, knowledge, financial assistance, and of course, emotional, social and psychological support are vital for the family as a whole.

CanKids…KidsCan is a family support group for children with cancer and their families, set up in January 2004. We are a unit of the Delhi branch of the Indian Cancer Society. We are members of the International Confederation of Childhood Cancer Parent Organizations (ICCCPO) from whom we take our guidelines and have developed our mission statement.

Our vision is that if worldwide 70–80% of childhood cancer is curable, then in our country too, 70–80% children must survive the disease.

Equally no child should miss out on treatment for lack of finance. CanKids…KidsCan is dedicated to the cause of providing cancer care to the community. Our mission is to enable and ensure:

• The best possible treatment and care, helping to build bridges between medical professionals and the families, providing a happy and cheerful environment at treatment centres and share information, experience and access to advances in treatment from all over the world
• Social and economic support so that no child misses out on treatment due to lack of finances
• Emotional and psychological support from the moment of diagnosis, through treatment and beyond
• Effective reintegration into society during and after treatment
• Continuity of care through relapse, palliation and loss, on the one hand, and survivorship on the other.

Our central message is – you are not alone.

Programs and our team

CanKids provides a complete range of support services to children with cancer and their families including:

• financial assistance for treatment and investigations – help has been provided to over 1,500 children since 2004
• education for children during treatment and financial assistance to get them back to school afterwards
• information and awareness about childhood cancer and all its aspects, with a focus on the message that childhood cancer when detected in time and treated properly is curable emotional and psychological support to over 2,500 children and their families, through our Parent Support Group, and our counselling clinics
• effective reintegration into society for children getting back to school and college and parents who need to supplement their livelihood.

Cankids offers its services through Chattai clinics and paediatric oncology wards in cancer centres, at the Cankids Haven in Vasant Vihar, and our Home Away from Home in Kotla. The Home Away from Home, set up in January 2008, provides child appropriate accommodation to children with cancer and their families. It can house up to 22 families at a time. Our first outstation unit was set up in Patna in June 2008, and is being run by with parents of children with cancer from Bihar. We now accept appeals for medical assistance from outside Delhi as well.

Our aim is to grow into a nationwide organization, setting up units in other states independently or with other non-governmental organizations who are working in the field. We also plan to set up the first Cankids National Childhood Cancer Centre in the Delhi area within the next few years.

Cankids is a primarily volunteer based organisation, although recently, as our programs and scope of work has increased significantly, we have taken on full time personnel. Today we have a dedicated team of almost 50 volunteers, employed staff, Parent Support Group (parents of children who have cancer) and Kidscan Konnect members (childhood cancer survivors, their siblings and friends truly committed to the cause).

Parent Support Group

The CanKids Parent Support Group (PSG), founded in 2005, is a focused support group of volunteer parents of children with cancer, who have already made the tough journey. It offers information, initial emotional support and compassion and helps empower families now faced with child cancer. The PSG is available at all clinics, wards at the All India Institute of Medical Sciences and Indian Rotary Cancer Hospital, Cankids Haven, our Home Away from Home and on the phone, for information, facilitation, guidance, and logistical and emotional support.

The PSG provide support from the moment of diagnosis, all through treatment and after. Bereavement support and home visits are also organised. It hosts and moderates Parent Support Forums, together with hospital doctors and staff to learn more about treatment and related aspects, to present common problems and difficulties, and to clarify misconceptions and doubts. Their role is vital in helping the families battle cancer.

If you’d like to know more about CanKids…KidsCan, please visit our website www.cankidsindia.org or contact poonambagai@cankidsindia.org

Our Pledge

Because you are able ... because you can
Because you can do anything you set your mind to
Dream big… Reach for the stars… Touch the sky.
Hold out a helping hand
Be the wind beneath their wings
Soaring ever upwards
Fly in the face of their storm
Then share the joy of a rainbow
And bask together in the sun
Forever stand tall
Be a hero
Among heroes
Because you can!