Dr Sanjeev Kumar Digra
This is the story of a young boy Sonu (name changed) from a very small village in Kishtwar. Sonu loved playing outdoors but that day he was looking out the window while shivering with fever. At first, his parents passed it off as just a common fever due to the cold but they soon began to worry as Sonu’s throat started to swell up in the following days. Distressed by their son’s condition the couple took him to a local faith healer who kept performing rituals for few days. Then one day Sonu started bleeding from his nose, this finally got the couple to approach the doctor at a local health centre. The doctor over there gave Sonu some medicines and referred him to SMGS Hospital, Government Medical College Jammu.
It took the family a whole day to reach the hospital where several tests were performed and Sonu was diagnosed with blood cancer. The parents were devastated and were adamant on taking their child back as they believed that there was no treatment that could save their child from cancer and even if there was a treatment the parents didn’t have enough money. But the resident doctors asked them to attend the counseling session with consultant in-charge, social worker and the counselor as per the protocol. When they were counseled and assured that the kid would receive free of cost treatment, and all possible help with regards to other supportive things like blood, platlets, etc if and when required this convinced them to agree for their son’s treatment. The treatment was started and after a few weeks Sonu started showing improvement. Disease was controlled and Sonu was found to be in remission. As the family was a poor one the parents wanted to go back to their home village to gather some supplies. The treating team agreed but asked them to return within a week as a longer leave might compromise Sonu’s health. A week passed away but the family didn’t return so the doctor asked the concerned social worker to track the family down. The social worker contacted the family and after few days of repeated calls they finally came back for the rest of the treatment. After completing a three year long treatment Sonu is presently leading a healthy life. Sonu was fortunate but not all the kids suffering from cancer are. Many of them go undiagnosed or untreated and in a lot of cases parents end up abandoning the treatment half-way.
More than 0.2 million cases of pediatric cancers are detected every year worldwide and majority (85%) of these cases occur in developing world. While in developed countries 5 year survival rate is around 85- 99%, in developing countries it is around 20%- 40%. In developing countries like India the main focus of pediatric care has remained so far on controlling and reducing the infectious disease and malnutrition related deaths as these are the major killers of children in these countries.
In India nearly 50000 new cases of childhood cancer are reported every year. But childhood cancer care has never been an area of attention in India as majority of cancers occur in adults and cancer is considered to be the 9th common cause for the deaths in children between 5-14 years of age.
Childhood Cancer Day
The poor state of pediatric cancer care and treatment outcome is due to many factors such as poor health care seeking behavior , lack of awareness about early signs of childhood cancer, poverty, delayed diagnosis, nihilism about childhood cancer, abandonment of treatment, lack of experience and inadequate infrastructure as evident by Sonu’s story .
Every year 15th February is observed as International Childhood Cancer Day to disseminate awareness about childhood cancer. Cancer in children is not common, but if any of the following signs or symptoms are seen to persist in any child it is important to see a doctor especially a child specialist:
* An unusual lump or swelling
* Unexplained paleness and loss of energy
* Easy bruising or bleeding
* An ongoing pain in one area of the body
* Limping
* Unexplained fever or illness that doesn’t go away
* Frequent headaches, often with vomiting
* Sudden eye or vision changes
* Sudden unexplained weight loss
Most of these signs and symptoms can be caused due to injuries or infections. Rarely these can be early warning signs of cancer.
In India Pediatric cancer care scenario has changed a lot for better in past two decades. Many organisations , NGOs, social activists, volunteers and doctors have collaborated to overcome the aforementioned barriers and improve the care of these children with cancer. This has improved the average 5 years survival rate to 40-45% in India.
A similar initiative was taken in Jammu in department of Pediatrics, SMGS hospital, Government Medical college Jammu in 2014 when a dedicated ward for children with cancer was established. Since its establishment free of cost treatment is being provided to children with cancer with the help and support of various NGOs/trusts/Volunteers such as CANKIDS, JIV Daya Foundation, HOPE, AMMU Trust and SPARKLES Women Club Jammu. All high end costly investigations and drugs essential for optimal care of these children and which are not available at present in GMC Jammu are being supported by these NGOs. Recently with the help of CANKIDS online nutritional counseling has also been initiated to take care of special nutritional needs of these kids. Most of these children undergoing treatment at this center belong to poor families. To make their stay comfortable the ward has been made as child friendly as possible. A play area is also developed with the help of SPARKLES club which was inaugurated by Hon’ble Lt Governor Shri Manoj Sinha ji in December 2021.
In line with this years International Childhood Cancer Day theme ‘Better Survival’ is achievable #throughyourhands let us take a pledge that every child with cancer must get optimal care and treatment and a fair chance of survival.
(The author is Professor Consultant I/C Pediatric Hematology-Oncology Ward SMGS Hospital Government Medical College Jammu)
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