Life changed overnight for Suki and Aman Rana. One minute their two-year-old son Raj was happily watching television; the next he was lying listlessly on the floor crying, his arm a dead weight. By the early hours of the following morning he was having emergency surgery to remove a blood clot from his brain. But the family’s ordeal last June was only just beginning: tests revealed Raj had a malignant brain tumour that could kill him within months.
“It was a huge shock,” says Suki. “Raj had no symptoms before that day. We thought, how can he look so well if he’s got a brain tumour? But the surgeon said he was more worried about Raj than any of his patients, so we realised it was very serious.”
Raj’s parents faced an impossible decision, as we’ll see in Brain Doctors, a new documentary series focusing on the neurosurgery department of Oxford’s John Radcliffe Hospital. They could opt for high-risk surgery to remove as much of the tumour as possible, which had a risk of leaving Raj quite severely disabled yet still offer only a 30 to 40 per cent chance of five-year survival; or lower-risk surgery, which would be less successful in treating the tumour. Or they could do nothing.
Suki remembers: “The neurosurgeon, Jay, talked about what he would do if it was his child. He said if he knew definitely that it was a glioblastoma – the more aggressive tumour – he would probably say, ‘Do nothing’, and just enjoy the time we had left together. In those conversations my husband was the one in tears, while I was the one saying, ‘Give me the facts’.”
The family had three weeks to decide. At first husband and wife found it hard to agree. “Initially Aman was against any surgery,” says Suki. “His thoughts were that if Raj was paralysed and died anyway he couldn’t enjoy his last months of life – that’s what we both dreaded. Raj is very active, always wrestling and running around with his four boy cousins. We thought about how much he would hate not being able to join in with them, and Aman thought Raj would hate him for paralysing him.
“But I felt that if there was any chance we had to take it, and that we could cope with disability – it would be much harder to cope with Raj not being around. At the same time I knew that if I made my husband do something against his will and things went really wrong he would blame me, and that could make things very difficult for us as a couple.”
After endless discussions Suki’s conviction won her husband over. The couple opted for high-risk surgery and prepared themselves practically and psychologically for life with a disabled son. They made sure Raj had as much fun as possible while he could still run around, including a trip to Euro-Disney. They also started serious money-raising for the Brain Tumour Charity, which funds research (thebraintumourcharity.org).
The operation brought good and bad news. Raj was not paralysed – he just has one weak hand – but the tumour turned out to be the more aggressive glioblastoma. He’s now three and having chemotherapy, which meant Christmas in hospital, and the family’s hopes are pinned on April and the next scan. Suki says, “Without the surgery Raj wouldn’t be here now. We just enjoy life with him. That’s the only way we can take every day.”
Brain Doctors begins on Wednesday at 9:00pm on BBC2