At 25 years old, Sandeep Kumar has come a long way since his Ewing’s Sarcoma diagnosis and battle with cancer, not only emerging victorious, but having become more resilient in mind. Reminiscing about his emotionally challenging past, Sandeep feels that although grueling, his experience has transformed him as an individual.
Sandeep was born in Uttar Pradesh, and has an older brother and 2 younger sisters. Sandeep’s father is a farmer, and his mother is a homemaker. All was going well, when suddenly one day Sandeep had severe pain in his right arm. Upon being examined by doctors in the nearby villages, one doctor from Gorakhpur told his family that if the hand was not amputated, Sandeep would die, quoting a total expense of Rs. 1,50,000/-. At the advice of his Mumbai-based uncle, Sandeep’s family took him to the Tata Hospital. At this point, Sandeep had no knowledge about anything. His father, who was informed about the diagnosis, was distraught. In March 2007, at the tender age of 13, his son had been diagnosed with bone and soft tissue cancer, with the risk of losing his arm, and possibly his life.
Sandeep’s chemotherapy treatment started at ACTREC. After the first 6 chemotherapy treatments, a surgery was done at the Tata Memorial Hospital, and then followed up with 8 more chemotherapy treatments. The young Sandeep took each day in his stride, despite the persistent fatigue and vomiting. He had a lot of anger also within him, and had difficulty sleeping, particularly on his chemotherapy session days.
During his Mumbai stay, Sandeep faced challenges. The chemotherapy facility could not be accessed from his uncle’s home, and on the doctor’s recommendation, he was moved to ACTREC, where he completed his Ewing’s Sarcoma treatment over the course of a year. At a VCare function, during his stay at the hostel, Sandeep met Vandanaji. The entire cost of Rs. 4,50,000/- for Sandeep’s stay and Ewing’s Sarcoma treatment was supported by the MSW Department of Tata Memorial Hospital. He also received help from the Prime Minister’s Fund.
Throughout his Ewing’s Sarcoma treatment, Sandeep was extremely warm towards his caregivers. Even before his surgery, he was smiling, and when asked why he wasn’t scared by the doctor, he quickly chimed, “No I am not scared, as I know I am in good hands.” The doctors saved Sandeep’s hand, and although initially he was unable to write because of the operation, rigorous physiotherapy for 6 months helped him regain his writing skills.
Sandeep credits the support of his family, and his doctors for helping him sail through this period with grace. He says that it was also his belief in himself that got him where he is today. The people from his village never thought that he would come back alive from Mumbai, because they perceived that cancer equaled death. But Sandeep had made up his mind that he was going to heal. After his year-long treatment was complete, Sandeep returned to his native place. It took a while for the villagers to get used to Sandeep with a bald head, and he was met with a lot of weird looks. He went on to complete his school studies and finished his 12th grade from UP state board. Sandeep is currently pursuing his graduate studies in Sociology via correspondence. His older brother is close to receiving a Bachelor’s degree in Technology, while his sisters are completing their undergraduate studies.
In 2015, Sandeep completed a certificate course in ‘Professional Oncology Caregiver’ a 4-month training under the psychologists at Tata Memorial Hospital and also various organisations working in the field of cancer. This gave him the opportunity to go to all wards, and OPDs at the Tata Memorial Hospital.
After 2016, Sandeep attended events, conferences and workshops in pediatric oncology. In 2017 during a PHOSSCON meeting at Kolkata, he won a trip to Kerala in a debate on ‘Childhood Cancer—should it be included in disability act or not’. He participated in the Tata Mumbai Marathon.
In 2018, he was awarded Victor award on behalf of V Care Foundation and ‘We are Proud of You’ from Ugam. He led the survivors team during ‘Change for Childhood Cancer’ in Maharashtra Car Rally.
In 2019, he was awarded the ‘Best Cancer Awareness’ award by Cankids. He has been a part of Nukkad Natak about awareness. He manages the Maharashtra Cancer Helpline number.
Currently he is working with Cankids as a patient navigator and care coordinator for western region with 12 hospitals under him. He is also the leader for ‘Teenage and Young Adult Childhood Cancer Survivor Support Group’ of Cankids. There are around 180 members, he plays the key role of giving motivation, emotional support, information, education support for hospitals and not for profits.
He is leading the campaign, ‘Haq Ki Baat’—from Mumbai to Lucknow to UP for cancer awareness and advocacy for Childhood Cancer treatments to be available for children in India and it is their right not a privilege.
He was selected to go for ‘The International Society of Pediatric Oncology 2019—Childhood Cancer International Conference at Lyon, France. He presented research done on ‘Childhood Cancer Survivors are learning and leading the research to manage their long term side effects’. This was very well appreciated and he was given a standing ovation for the same. He was very happy as he could make many friends all over the world—Japan, Hongkong, South Korea, Ghana, Switzerland, France, South Africa, Purtgal, Spain, the United States, etc.
In January 2020, he is participating in the Half Marathon (21Kms) in support of cancer awareness.
Today, Sandeep loves reading, biking, and making new friends. Resolute about working in the field of cancer care, he would like to work in the MSW departments at hospitals, and reach out to patients to share his knowledge and experience, after completing his studies. He completed his graduation in Sociology in 2018, now pursuing his final year Masters in Sociology. Further, he is planning to go for higher studies in Development Management and then a Doctorate (P.hd).
Sandeep stands convinced that if he could conquer cancer, no mountain is too high. Calmly, he quotes, “Mushkile dil ki irade aazmati hai, Khwabo ko nigaho ke parde se hataathi hai! Mayus na ho apne irade na badlo taqdir kisi bhi waqt badal jati hai.”