MIRROR UK – Namrata and Bhavesh Pandya’s 14-year-old son Khushil dreamed of becoming a zoologist and when he was diagnosed with an incurable brain tumour chose to keep the seriousness from him but when he died they discovered he had known all along
Tears coursing down her face, Namrata Pandya sat on her son Khushil’s bed in his room with his favourite wildlife animal and nature posters on the walls, cupboards overflowing with his books.
Her “happy, bright, loving” son had died a week earlier two-and-a-half years after being diagnosed with a rare brain cancer.
Khushildefied the odds when he died in September last year – he was given six to nine months to live when he was diagnosed with a rare Diffuse Intrinsic Pontine Glioma (DIPG) – which affects around 30 children a year.
Devastated Namrata and husband Bhavesh, 43, decided not to tell their cherished son that he was dying because they wanted to protect him.
But then Namrata found Khushil’s diary in his book cupboard and in his familiar handwriting read an entry he’d made after his diagnosis in March 2015: “From day one, I knew the consequences.”
“In that split second, I knew that Khushil was aware there was no cure for his brain tumour and that he was dying,” said Namrata.
“We’d decided not to tell him because we wanted to protect him and didn’t want him to lose hope that one day he would grow up to realise his dream of being a scientist or zoologist.
“Some parents may not agree with our decision – and it’s the last one any parent wants to be faced with.
“It didn’t feel like we had to make a choice – not telling him felt right.
“We didn’t want him to stop living his best life possible.”
But that one line told his parents he’d known all along and hadn’t told them because he didn’t want to cause them any more pain.
“We’d thought we were protecting Khushil – but really he was the one who was protecting us,which is typical of the loving, caring boy he was,” said Namrata.
Namrata had always longed to be a mother and was overjoyed when she gave birth to Khushil on December 8 2002.
“I had the most precious title on earth: Mum,” she said.
“As a baby he’d lie on top of my chest and as he got older he always wanted to be near me.
“We’d snuggle up on the settee as we watched his favourite cartoons Scooby Doo and Sponge Bob Square Pants.
“Then he loved nature programmes like David Attenborough’s Blue Planet and Steve Backs hall’s programmes.
Star pupil, 17, dies ‘in cocaine fuelled sex binge at parents’ £1million home’
“He was so loving and very protective of me. His smile lit up the room.
“Bhavesh was his partner in crime and they were always playing tricks on one another. When one was in the shower, the other would turn on the taps downstairs to make the water go cold!
“The three of us just loved being together. We enjoyed holidays including trips to India to visit our families, playing board games and table tennis every Saturday at the leisure centre.
“Khushil used to joke, ‘Buy one, get two free!’”
That happy life was “spun out of orbit” when Khushil had an optician check-up in March 24, 2015 because he had a squint in his left eye.
From there they were sent to an eye hospital which sent Khushil to their local hospital,where he had an MRI scan the following morning.
“I was so scared and each and every minute felt like an hour as we waited for the scan results,” said Namrata, 39, a financial advisor.
“Finally a doctor came and asked to see us in another room and we left Khushil chatting to a nurse about school.
“The first question he asked was, ‘Is Khushil your only child?’ I had a sick feeling in my stomach as I replied,’Yes. Why?’
“Then he told us that Khushil had a brain tumour and that they’d sent the scan to University College Hospital, which had confirmed it was cancerous.
“We were in shock and just sat there in silence. One minute Khushil had a squint and I thought maybe he needed glasses, the next he had brain cancer.
“I couldn’t even cry – I felt frozen.”
But later that evening the shattered couple sobbed in each other’s arms.
“I couldn’t believe that from having a happy life together, in a second everything had been snatched away,” said Namrata.
“We decided we wouldn’t tell Khushil about his diagnosis – we wanted to protect him and let him live his life as normally as possible.”
Even worse news was to come when Khushil had another scan at UCLH.
They were told that his tumour was a DIPG, which has no cure and no child has ever survived .
The only available treatment was radiotherapy which could buy them some extra time. He was also put on steroids.
“He told us that Khushil had six-nine months to live,” said Namrata.
“I just couldn’t believe it and I didn’t want to believe him.
“How could I accept that there was nothing that could be done for my beautiful boy?
“That there was no hope?
“It had taken me my whole life to become a mother and nine months to carry Khushil and give birth to him.
“Now he had nine months to live.
“We were going backwards – it felt like the years were being stripped away one by one.”
But thec ouple vowed to make the most of the time Khushil had left and drew up a wish list of things he wanted to do.
He was a pupil at Claremont High School near his home in Harrow, north-west London and loved so school so much that he insisted having the first radiotherapy sessions at hospital.
“Every morning, Khushil put his uniform on, packed his school bag and he’d have his radio therapy between 8-10am and then go to school,” said Namrata.
“He knew he had a tumour and he asked the doctor if he was a cancer doctor, but he never asked us questions about his diagnosis.”
The family went on trips to Khushil’s favourite places like safari parks, Thorpe Park, Planet Hollywood and he met his heroes including magician Dynamo and Deadly 60 presenter Steve Backshall before a live show.
And Manchester United fan Khushil watched a match from the Old Trafford directors’ box, and he met his heroes Wayne Rooney, Sir Alex Ferguson and Sir Bobby Charlton in November 2015.
“As we got past six months, then nine months we were so thankful Khushil was still with us but it felt like we were living on borrowed time,”said Namrata.
In August 2016, they went to Alaska.
“One night we were driving in the dark when suddenly the sky was illuminated by green light,”said Namrata.
“It was the Northern Lights and Khushil’s face lit up in wonder.
“I’m so grateful we had such wonderful memories as that was Khushil’s last holiday.”
Back at home, a scan revealed that his tumour had started growing again.
Over the following months, Khushil’s symptoms got worse including a limp in his right leg, slurred speech and difficulties swallowing.
Incredibly, he went on his Duke of Edinburgh expedition in June 2017 and got his bronze award, although he was in a wheelchair by then.
As the end drew near, the couple cared for Khushil at home.
“No one should ever have to choose where their child will die,” said Namrata.
“But I didn’t want him to die in hospital, I wanted him to die in my arms in his own home.”
Khushil died on September 4 last year.
“He looked so peaceful like he was sleeping,” said Namrata.
“But it felt like the world had stopped and I’d lost the light of my life.”
As they struggle to adjust to being a “two instead of a three”, the couple have setup a fund in Khushil’s memory The Brain Tumour Charity to raise money for research into DIPG.
And on what would have been Khushil’s 16 birthday today (December 8) – Namrata is launching her book, Perception, telling Khushil’s story to raise money for the charity.
“We still findit hard to accept that nothing could be done for our son and that no progress has been made in treatments for DIPG for over 50 years,” Namrata said.
“Now we are sharing our story to support The Brain Tumour Charity as we want to help give other children hope in the future.
‘I cannot accept there are no answers and I feel driven to help make a difference as part of Khushil’s legacy.”
Despite her heartache, Namrata feels “privileged” she was Khushil’s mother.
“That love will never die and the way he lived in the moment and the strength he showed inspires me.
“I believe happiness is a choice and, although our lives will never be the same without him, I know Khushil would want us to somehow find a new happiness one day.”
Sarah Lindsell, The Brain Tumour Charity’s chief executive, said: “Our hearts go out to Namrata and Bhavesh at the loss of their beautiful son.
“It is unacceptable that in this day and age, parents have got to hear the words that there is no cure and no hope for their child.“We are so grateful for their support as the only real hope of better treatmentsand ultimately a cure is in research.”