Mum Talks About Young Daughter’s Brave Cancer Journey

Last year life changed immeasurably for 12-year-old Saniya Nair and her family when she was diagnosed with Acute Lymphoblastic Leukaemia.

Suddenly their routine was shattered, as every day started to revolve around Saniya’s treatment and lengthy hospital stays for her and mum Smitha Riji Nair.

Smitha, who is a nurse, said: “Thankfully that part of the treatment, which was the toughest part, has finished. At times it was really bad. You have no normality in your life, and you are never able to plan ahead because you have no idea where you will be.

“I have to say that Saniya is really strong. If it wasn’t for her positive attitude I don’t know how, as parents, we would have survived this. Even when she was going through really tough times, she had this smiling face all the time. The doctors always remarked on the fact that she never complained. At one point I was worried that she was just too scared to say anything. But Saniya understood what was happening to her very well. She kept us going.”

Saniya, now 13, spent 70 days in London’s St George’s Hospital followed by another 68 days at The Royal Marsden. Luckily Smitha was able to share her room and be with her throughout the treatment. Dad Riji worked from home and looked after Saniya’s six-year-old sister Raiya.

Saniya eventually came home on December 23, in the hope that she would be able to spend Christmas at home, but her temperature started spiking again so she had to go into Medway Hospital and then she was diagnosed with Covid. She finally came home again on New Year’s Eve.

Her mum said: “2021 was a very tough year. We have no family here, but a few of our friends have been so helpful, especially bringing Raiya and Riji meals while Saniya and I were in hospital and helping him with the school run. Raiya really missed us while we were in hospital, so it was a difficult time for her too.”

Throughout Saniya’s treatment, the family have received regular home visits from ellenor’s Developmental Clinical nurse Specialist Tina Dodd and her colleague Suman. They were able to give daily infusions, which drastically cut down on hospital visits, and continue to do a weekly infusion and blood test.

“We know them so well now,” said Smitha. “They are so friendly and have made life so much easier for us.”

Saniya’s symptoms began in 2020 and initially doctors put them down to growing pains or possibly rheumatoid arthritis.

Smitha, who came to the UK from India 17 years ago, said: “The trouble is that there had been no research on Asian background children. As I work in a hospital, I was able to talk to my colleagues there and they knew something wasn’t right.

“She was in agony with swollen joints and in the end, we took her to the Evelina Children’s Hospital in the middle of the night. It was life changing for us because they were able to diagnose what my colleagues had been hinting at. When it’s your own child, you just don’t want to believe it.

“The doctors asked if I wanted them to tell her, but I said I wanted to tell her myself. But Saniya already seemed to know; she had seen something about it on TV. She was most worried about losing her hair and her change of appearance.

“We have always talked about her illness and what is happening to her because I don’t want her to bottle things up. Whatever is bothering her, she should always tell me. I can’t always find a solution to everything, but I might be able to help.”

Saniya started to lose her hair after the first two months of chemotherapy, and she and her mum decided to clip it rather than watch it falling out every day. She had a wig from the Prince’s Trust, but mostly just wore a hat.

Her treatment, which started in April 2021 soon after her diagnosis, lasts three years. It began with very intense chemotherapy, during which time Saniya had some setbacks and was extremely poorly. She even had to have her appendix removed after it perforated in the middle of treatment. At the same time fungal lesions were also spotted on her liver, spleen and lungs, which are still being treated with antifungals.

Smitha said: “Being a nurse can be a curse as well as a blessing because you know when someone is acutely unwell and I have experience of working in theatre, so I was especially worried when Saniya had to have her appendix removed.”

‘I just want to go to school’

This year the family were able to celebrate Saniya’s birthday by going out to dinner, in stark contrast to 2021 when Saniya was acutely unwell in hospital. She is officially in remission and looking forward to going back to Rochester Grammar.

Saniya herself says she is feeling more positive now and looking forward to being able to do some of the things she was unable to do because of Covid and her illness.

“I just want to go to school,” she said. “I don’t like learning online. I haven’t been able to go anywhere for such a long time or see any friends. But things are already getting better now we are all at home together.”

Her favourite subjects are art and maths – she even drew the Royal Marsden Christmas card for the Duke and Duchess of Cambridge while she was a patient there.

Saniya still has a difficult path ahead, but the most severe part of her treatment is over, and the prognosis is good. She still has monthly intravenous chemotherapy, which leaves her in severe pain for the following fortnight.

Her mum said: “It’s painful to watch her go through that. Managing the pain is our main challenge. We are just focussing on next August when the treatment will finish.”