Why my child has cancer? What have I done to deserve this pain of seeing my beloved child go through the excruciating pain of being cancer affected, denying her/him of all the joys of childhood? These are questions that are posed by parents of the affected children we work with. In some cases, parents repeatedly ask such questions when their much-loved child takes her/his last painful gasps of breath and loses her/his battle for survival (heart-rending experience for them). Unfortunately, there are no answers to such questions as of now.
No doubt ‘childhood cancer is curable’. However, there are some ifs:
- if cancer is not diagnosed too late or after it has engulfed all the vital organs of the child’s tender body
- if the health care provided by hospitals inclusive of medicines is of good quality
- if the parents have adequate finances and if not support from the government and civil society to meet the heavy costs of long drawn treatment and regular follow up
- if the child gets the nutritive diet required to build the immunity to fight the disease
- if there is an emotionally and socially supportive climate which is conducive for child survival
- if the air, water, land and forest bodies do not suffer destruction and are not polluted
When these and other conditions are not fulfilled, some cancer affected children lose their battle for survival and many others live in danger of the recurrence of the disease. Further, many more get affected by the disease in the future. Childhood cancer impacts the child, the family, community and society at large in many adverse ways.
Children in pain: Loss of most meaningful and joyful childhood years: For the child, cancer means days, months and years of excruciating pain and discomfort often a life of listlessness. It means the pains of the needle inserted into one’s tender arms, lying in hospital beds for days at a time and staying away from homes and schools for months and years. It means the denial of all joys of childhood – the games, the laughter, the tastes, the little acts of mischief and fights with siblings, interaction with friends and the exploration of the world around. The child loses to cancer some of the most meaningful and carefree years of her/his life, and in some cases despite all efforts, the most precious life itself.
Families in crisis: Families face a situation of distress and crisis more so from the time the child is diagnosed with cancer. It is a traumatic experience for them to know that their member suffers from the much-dreaded disease. The grief, the fear, the guilt that follows throws many families off balance. There are other siblings who are younger or older than the affected child who has to face a new reality. The absence of one or both parents during periods of a child’s hospitalization affects the caregiving atmosphere at home for all the other siblings. The economic burden resulting from this, that many families with limited means have to carry despite availing the government schemes (only BPL families are eligible for it), or not getting any (i.e. above poverty line) adds to the distress experienced by them.
A mother, in particular, carries the heaviest weight of suffering when there is cancer affected child. She could be a stay at home mother, a day labourer or a more or less regular jobholder who has to take frequent leave from work when the child is in pain or admitted to the hospital. She goes through much anxiety and fear. She consoles the child when in pain and persuades the child to consume food even when her/his taste buds are dulled by the disease, pushes the plate away. Especially when the father is absent (due to death, disease or addiction), it is she who has to carry the heaviest load on her shoulder inclusive of the financial, even though in some cases close relatives may offer support from time to time. In situations of domestic violence which women face in many authoritarian or male dominant households, mothers of affected children suffer much. This is not to say that the fathers suffer less. Fathers, especially those who share in caregiving, carry a heavy burden of grief too. Some have to work doubly hard as labourers, farmers or other job holders to pool money and take loans to meet the costs of treatment for the child besides the regular family expenses. Perhaps fathers hide their feelings of grief and inner turmoil under a veneer of external calm as the patriarchal family expects them to do so. Our caregivers encounter fathers who cannot bottle up their emotions any longer and burst out sobbing and crying when they find a listener who empathizes with them. In short ‘Childhood cancer means shared distress in the family’.
Insecurity in communities: Cancer is a disease which affects children – girls and boys across income groups (the poor, the middle and the rich), across ethnic (ex: castes, tribes and religion based) communities, and across geographies (urban, rural, developed and backward locations). Childhood cancer is an equalizer, unlike infectious diseases which take a much heavier toll on the economically marginalized for obvious reasons. As cancer is viewed as a disease over which one has the least control, it provokes intense fear and insecurity in the community – more such cases prevalent in the locality/community, more the anxiety. What if my child becomes the next victim? The bell could toll for me or someone very dear to me, my child or grandchild – we never know.
Society pays a heavy cost: Childhood cancer involve heavy costs to society – counted in terms of costs incurred by the state and people on health care, costs due to loss of labour days of parents, costs of reduced cognitive competencies and abilities of the affected children, costs in terms of loss of their productive potential in later years and costs due to loss of precious lives. The costs of pain/suffering the child and their family go through cannot be measured in economic terms. Meeting the conditions to ensure survival from cancer means a win-win situation for affected children, their families, communities and societies which include the state that has to incur larger portions of resources to meet the healthcare needs.
Concerted interventions are made by the state, health care sector and concerned individuals/organizations to meet at least some essential conditions required, contributing to increasing the survival rate among children affected by cancer. However, there are some who do not make it. Increasing number from the economically marginalized families are coming to the hospitals with their cancer affected child. The questions we need to ask are what we need to do to express solidarity with cancer affected children and their families? What we need to do to facilitate early detection and timely treatment? What we can do as individuals, organizations, institutions, communities to prevent cancer by promoting the health of our children? Safeguarding the right of children to live with dignity and joy is a collective responsibility of the state, the health service sector and all of us who are members of the civil society. Shall we join hands to make the child win, not cancer?
Dr Rita Noronha
Mr Herald Moras
Chief Coordinator- CEDSE Care Child Cancer