Leaving behind a dramatic legacy: The story of a 16-year-old who lost her life to a deadly disease

Sakshi Verkot was incorrigible. Even at the height of her cancer battle, the Indian expat would find the energy to mimic and mime and make her visitors laugh. “People who came to visit her thought they would be comforting a 16-year-old, but they were the ones who would walk away comforted,” says her mother, Binu Sivan.

Sakshi was 16 when she passed away last year. She had DSRCT, or desmoplastic small, round cell tumours, an aggressive type of cancer that forms in the connective tissue of the body.

“Like every parent, I’m prejudiced to thinking that she’s brilliant, joyful, etc. But since her passing, I have realised that her impact on the world around was even better than I had realised, just because of the person that she was: very kind and loving. And I didn’t even realise the impact until much later, when people would reach out to me with stories saying she did this for me, she said that to me,” the mother recalls.

When she was 14, Sakshi began to show certain symptoms — she had a lump on her forehead for a while, then she sprained her hip. Although she went to physiotherapy and it improved, a few months on, the pain returned. “It was 2020 and we were in Covid-19 quarantine,” recalls Binu. But once that was over, the rounds of hospital visits began. There were CT scans and conversations with doctors, but no comprehensive diagnosis until they met a neurologist who said both lump and limp troubles were related. After MRIs, they finally knew what they were facing. An extremely rare disease, DSRCT was only identified as a separate condition in 1989. There is little literature on the disease and poor prognosis for the fighters. Sakshi was given a seven per cent chance.

“She was put on chemo. The associated chemo (a borrowed protocol) is among the toughest in the world. Normally, after a chemotherapy session, a person’s immunity level comes down, then it gets better. Then you have your next chemo session. When it’s really bad that’s when you have something called neutropenic fever, which is a very serious condition because immunity is low and it can send one into septic shock. Sakshi, who was under the P6 protocol, got neutropenic fever after every chemo treatment.”

From January to November 2021, she took chemotherapy and her cancer reduced. “It looked like we were going to beat it; we were quite gung ho,” says her mother. But then she had to have a surgery called Hyperthermic Intraperitoneal Chemotherapy (HIPEC) surgery. “This is a very specialised surgery. Because basically it means, opening up the abdomen, removing the cancer and giving the abdomen a hot chemo wash,” she explains.

Through it all, Sakshi’s attitude remained positive, says Binu. “Obviously, she had bad days because she was only 15. Everybody was doing things and she was stuck here, losing her hair, her eyebrows; she loved makeup and loved to dress up. She loved theatre and to act on stage. All of that was affected,” she adds.

In January 2022, Sakshi was recovering from brain radiation and she was on a chemo protocol as well. “The idea was to continue with this chemo for a few more months after she had abdominal radiation, and then get on to maintenance chemo and be done. But then in February 2022, she started to get terrible headaches. And in March, weakened, she fell a few times.”

“In the middle of all this, she also went and attended her junior prom, and was crowned the prom queen. She did very well in her tenth examination. Her photo came in the papers and all that stuff,” says a proud Binu.

“Then there was fluid build-up in her brain and a shunt had to be put in to drain it. Then, she began to have trouble with her vision. The dizziness and headaches returned. But she would still squint at her phone and put Sephora orders on it,” recalls Binu. And though her hearing was failing, she would listen to Harry Styles and Maneskin. By April, Sakshi was on a wheelchair.

“By June 28, they did another spinal tap to see the progress of the disease. Once cancer gets into the spinal fluid, unless it is leukaemia, there’s no treatment. Basically, there’s nothing you can do. So the doctors called us and told us, ‘we can’t do anything’. But we were still fighting for some solution. I think we did more research in one-and-a-half years than most people do in a lifetime. We heard about this medication that they were trying out in the US. We even spoke to the research scientist; we tried a variation of that medication. On July 5, she was admitted to a hospital for this treatment. She had one session — it was a Tuesday. That night she had a cardiac arrest around one in the morning and went into coma. The next afternoon, she passed away.”