WHEN Namrata Pandya was told her son had a brain tumour, she locked herself in a room and “cried and cried and cried”.
But as soon as she stepped out into the hospital corridor 30 minutes later, she plastered a brave smile onto her face.
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While the 45-year-old knew Khushil may only have months left to live, she desperately didn’t want him to know that.
Namrata, from Harrow, London, said: “It was the biggest shock of our lives, but I had to be strong for Khushil.
“In a day our perfect life changed into the biggest disaster.
“It’s the last decision any parent wants to be faced with – and some parents may not agree with us – but it felt right not to tell him.
“We didn’t want him to lose hope that one day he would grow up to realise his dream of being a scientist or zoologist.
“We didn’t want him to stop living his best life possible.”
Khushil first started to display signs that something wasn’t quite right in 2015.
He had developed a squint in his left eye so his parents assumed he simply needed glasses and took him to their local opticians.
“We never genuinely thought that he was unwell, but when they checked it, they said, ‘I’m not 100 per cent sure. Is it OK for you to go to the eye hospital?’,” Namrata said.
“I think we started worrying when we were transferred from there to another hospital.”
Scans revealed Khushil had a “pea-sized” brain tumour, and it was cancerous.
“My husband Bhavesh and I were blank because the doctor started talking about the fact it was inoperable,” Namrata, an independent financial adviser, said.
“After about half an hour, I think it sank in and that’s when it hit us.
“We didn’t go to see Khushil; we should have but we didn’t.
“I just left the room and genuinely cried, properly cried, because I knew that was the only time I would have time to cry.
“We literally cried for 30 minutes straight. I just cried and cried and cried.”
We’d thought we were protecting Khushil – but really he was protecting us
Namrata Pandya
Khushil’s diagnosis was eventually confirmed at University College London Hospital as diffuse intrinsic pontine glioma (DIPG).
It’s an aggressive, fast-growing brain tumour that develops in a part of the brainstem called the pons.
There is no cure, and no child has ever survived one. Khushil was given six to nine months to live.
“He was lucky in the end; he survived two and a half years, and that is all because of his strength,” Namrata said.
“He didn’t let the tumour stop him from doing anything he would normally do.
“He didn’t even miss a day at school.”
Khushil began treatment to buy the family some extra time, which involved radiotherapy.
But after the second round, his parents knew he didn’t have long left.
‘Living by the second’
The family drew up a wish list of things their son had always wanted to do, like go to Planet Hollywood and watch a Manchester United game from Old Trafford’s directors’ box.
They also flew to Alaska in the United States – somewhere the youngster had always dreamt of travelling.
“It was the best trip we’d ever had,” Namrata said.
“He picked the destination, and it was all planned by Khushil, whatever and wherever he wanted.
“Since the day he was diagnosed, we were literally living by the second because we never knew if we would have a second day or not.
“There should be no parent thinking that they need to do something now as they may not have a next day with their child.”
She added: “Unfortunately, that was our last trip because by November 2016, he had started limping.
“Up until then he just had a squint. But he had been deteriorating and deteriorating.
“It got to the point where he couldn’t balance. You’d have to kind of hold his hands.
“He also couldn’t hold his neck up, he wasn’t able to see, and it was then that he started losing his ability completely.”
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Khushil died in his parents’ arms at home on September 4, 2017, aged 14.
Namrata later found his diary in a cupboard in his bedroom, and discovered that he had known he was dying all along.
One entry from after his diagnosis in March 2015 read: “From day one, I knew the consequences.”
Namrata realised then that he hadn’t told his parents because he didn’t want to cause them any more pain.
“We’d thought we were protecting Khushil – but really he was protecting us,” she said.
How to spot a brain tumour in your child
BRAIN tumour symptoms can be subtle and vague – and they vary between children.
But if you notice any of the following signs in your youngster, you should speak to your GP:
- Headaches
- Feeling or being sick (often in the morning)
- Seizures or fits (not related to a high temperature in babies)
- Problems with their eyes (abnormal movements, a squint, blurriness or double vision)
- Strength, balance or coordination issues
- Behaviour changes (sleeping more, less energy, extreme mood, confusion)
- Problems with their posture
- Delayed or stopped puberty
- Your baby’s head measures larger than it should
Source: Cancer Research UK
Namrata added: “Khushil lived his life on his own terms; he did not let his tumour dictate his life.
“His passion for studies and curiosity to learn new things every day was never lost.
“He wanted to become a zoologist and a scientist alongside that.
“He had some much knowledge, not that I could retain any of it, and he lived a fully accomplished life – he lived an 80-year-old person’s life in 14 years.
“Khushil inspired everyone through the quiet, methodical, determination he exhibited every day of his life.
“His attention to detail, his wit, his stubborn will to improve and succeed; his love of science, music, football, art and the natural world.”
Namrata and Bhavesh have since raised funds for the Brain Tumour Charity and its Give the Gift of Time this Christmas campaign to help prevent other families from experiencing the same heartache.
“I don’t believe that there isn’t a cure for any tumour,” the mum said.
“We have seen so much progress in so many different illnesses.
“There isn’t anything that is not achievable because we humans have got the brains to find something.
“Please donate to the Brain Tumour Charity this Christmas.
“Your donations will help families who are affected make more memories with their loved ones.”
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Previously called DIPGs, diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.
They grow in the midline between the two halves of the brain and affect around 20 to 30 kids every year in the UK.
Sadly, there is no cure. Radiotherapy is the most common treatment.
Symptoms vary, but according to the Brain Tumour Charity, most commonly children experience:
- Problems with walking, balance or coordination
- Weakness in the arms and legs
- Difficulty controlling facial expressions
- One side of the face looking different from the other
- Speech difficulties
- Problems with swallowing or chewing
- Double vision or problems controlling eye movement
- Headaches
- Nausea
- Fatigue
The life expectancy of someone diagnosed with a diffuse midline glioma will vary.
On average, most people survive less than a year. About 19 per cent survive at least two years after diagnosis, an only two per cent survive at least five years.
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