> Development > Health
Bablee Singh (name changed), a 12-year old girl from Majorgaon village of Sylhet district in Bangladesh, has been availing treatment regularly at the paediatric oncology unit of Dr. Bhubaneswar Borooah Cancer Institute (BBCI), Guwahati since March. Her father H. Singh (name changed), a farmer, rushed to Tata Memorial Hospital in Mumbai from their village located along Meghalaya-Bangladesh border near Dawki, when she was detected with Acute Myeloid Leukemia (AML) a rare type of blood cancer during January this year.
Currently 22 children suffering from different types of paediatric cancer are being provided free treatment, care and nutritional supplement at “Home away from home” St. Jude India Childcare Centre of the institute. These children, except Bablee, are from Assam and other north-eastern states. These children tell a larger story of awareness of paediatric cancer care and availability of free and affordable treatment for downtrodden children pushing the survival rate up in India’s Northeast region.
After initial phase of treatment when Bablee’s father was advised to take further treatment in BBCI, it was a great relief for the poor family, as it reduced the cost of treatment to a large extent.
“AML is a very rare type of blood cancer, and it needs need very intensive treatment. There is every possibility of relapsing and if it relapses, the bone marrow transplantation remains the only option for survival of the patient, which is highly expensive. Fortunately, Bablee has been responding very well to our treatment,” says Moonlima Hazarika, Professor and Paediatric Oncologist of the institute. Prof Hazarika, who is the lone paediatric oncologist in northeast India says, for bone marrow transplantation, patients have to go outside the north-eastern region as required machines and equipents are yet to be installed at BBCI.
After several months of intensive care and treatment, Bablee now visits the Institute once in a month to avail further treatment, which is crucial for her recovery. The Centre also organises recreational activities for these young indoor patients in addition to counselling of the parents, so that they do not abandon treatment midway due to depression.
The St. Jude India Childcare Centres also provide cooking facilities and nutritious ration to each of these child patients apart from safe and hygienic housing with a state-of-the-art cabin. It has 37 such “Home away from home” centres in India for underprivileged families including two centres at BBCI.
Bablee’s story reflects the positive outcome of sustained efforts of building awareness on paediatric cancer care in Assam and other northeastern states and availability of free treatment for the children of under privileged and needy families, says Prof. Hazarika.
Paediatric cancer has become a cause a major concern with enrolment of an average of 600 outpatients and 70 inpatients every month. An average of 30-40 new patients enrolled every month to avail treatment in the Paediatric Oncology Unit of BBCI. Cancer in children although rare, can be treated with timely intervention, as they are mostly not due to factors like consuption of tobbaco, alcohol which are more common in respect of cancer in adults. However, due to very low level of awareness the cancer in children are often detected late.
“Even, a paediatric doctor normally does not have the suspicion that the child may have cancer, when the patient is taken to him or her for any health issue. They initially try different treatments and when finally suspect cancer, it is often too late for treatment.” Hazarika says.
Due to very low level of health awareness, parents of underprivileged families often visit quacks, or go for locally available alternative treatments before reaching BBCI, but then it becomes too late, she adds.
The paediatric unit was set up in 2007, and since then relentless efforts have been made to raise the awareness on paediatric oncology. This has resulted in increase in enrolment of patients from different parts of north-eastern states, she says. In 2010 for example, 138 children detected with cancer were admitted in BBCI, which increased to 356 in 2018.
However, its paediatric oncology unit registered a sharp increase with enrolment of 531 new child patients till August. This is because of a growing awareness regarding availability of treatment facilities of BBCI, she adds. The adult patients availing treatments in BBCI too are instrumental in spreading the awareness in their respective localities regarding paediatric oncology and its treatment, which has helped in improving the enrolment of child patients of in the institute.
Prof Hazarika says paediatric cancer is often different from types that develop in adults. Unlike the adults they are often not linked to lifestyle or environmental risk factors. Very few childhood cancers are caused by DNA changes which are genetic and hereditary. The most common cancer in children is blood cancer (Leukemia and Lyphoma), brain cancer, bone cancer eye cancer (retinoblastoma) among others. ( See video below)
Due to low level of awareness, access to cancer detection and treatment facility, poor nutrition and nutritional support for a sustained treatment the cure rate is very low in comparison to advanced countries. In India, the specialities and resources are even much lower, says Prof. Hazarika.
To achive a high cure rate of the paediatric cancer, the institute has come up with a number of ideas including collaboration with different non-governmental organisations and individual donors who are willing contribute to the cause through charity.
"The state- of- the- art housing facility of the “home away from home” is a beautiful concept after such collaborations with St. Jude India Childcare Centres. It has also been able to raise Rs. 5,94,99,633 from different sources between 2013 and 2018. With this huge financial support, free treatment has been provided to as many as 1,382 children during this period", Prof. Hazarika says.
The Institute has also collaborated with Cuddles Foundation, Mumbai, that engaged a Paediatric Nutritionist for counselling on nutrition, apart from providing nutritional supplement to young patients, which is very crucial for their survival.
“Initially we start with the registration and collection of data including the diet history of the patients. Subsequently we make our own assessment of providing nutritional supplement to patient. Counselling to parents regarding side-effects of chemotherapy is very crucial for paediatric cancer. It is not only about awareness regarding what to eat or not, but each child requires high dose of nutritional and protein supplement after each chemotherapy” says Momi Barman, Paediatric Nutritionist appointed by of Cuddles Foundation in BBCI.
The Cuddles Foundation also offer regular morning breakfast of high nutritional value, and protein supplement. The nutritionist also help parents by providing ration for the kids who have to stay in rented houses for treatment.
It has also entered into a tie up with the US-based Jiv Daya Foundation that has provided BCCI a team of data managers and social workers to keep records also and counsel patients and parents.
In addition, organising blood and platelet donors is a regular activity of the institute as the highly intensive childhood cancer require constant blood and platelet support. It has also been able to provide a psychologist to provide counselling to parents to for motivation and to minimise stress.
Celebration of birthdays; organising workshops on art therapy, music, craft, dance; and parent support group meetings are also part of regular activities of the Institute.
“With all these efforts and interventions we have achieved much improved statistics of survival and cure rates of childhood cancer. The survival rate has increased to 63.64 in 2018 from 36.62 in 2013. But we have a long way to go to further improve the cure rate,” she says, adding that the situation demands a complete set up devoted to childhood cancer.
There is also a steady increase in reducing percentage of abandonment of treatment rate from 6.4 percent in 2015 to 2.6 percent in 2018. However, when the situation is improving fast, the unit is struggling with only a 18 bed paediatric ward dedicated to the treatment of children with cancer.
“We are fortunate that we have been able to receive a not only a free treatment here, but also housing, nutritional supplement and ration with a cooking space. All these have made the treatment for my child possible here. Otherwise we would have to abandon treatment with our little resources as an underprivileged farmer”, says H Singh adding that they has also spread the message of availability of such treatment facilities in Guwahati in their locality, so that more and more children suffering from different types of cancer can avail the fruits of it.
Navigations 
Quick Contact
Subscribe Us
Quick Mail
