George Newman was just 22 months old when he was diagnosed with a brain tumour, later identified as a high-grade medulloblastoma, in October 2001. It was discovered after he started vomiting and leaning very heavily to one side. He had also not been meeting all his developmental milestones and had been for hearing tests because of concerns over his balance. The youngster, from Barnet, North London, underwent surgery, chemotherapy and radiotherapy but died at home in November 2005, aged five.
Here is George’s story, as told by his mum Helen …
George was born in December 1999 and after his first birthday, we became aware that he had developmental delay. He wasn’t meeting developmental milestones in quite the same way as his older brother, Fred, but we didn’t think much of it because Fred was ahead of the game and George was doing things at his own pace. In the summer of 2001, George had his 18-month health check.
“We thought the health visitor was just fussing but she obviously recognised that something wasn’t quite right.”
It was around this time George started to overbalance. We were referred to the community paediatrician who arranged a series of tests, including hearing checks and a brain scan. We thought it must be his hearing, but the audiologists we saw were delighted to report that George’s was perfect.
“We were less excited because, while hearing loss isn’t a good thing, it seemed a lesser evil; something we could live with and make adjustments for.”
We were on holiday in the Cotswolds during the 2001 October half term when it became apparent something was seriously wrong with George. He was vomiting and leaning very heavily to one side. It was a really worrying time. We came home early and took George for the brain scan at Barnet General Hospital on October 26. Afterwards, my husband, Ed, and I went into a room with Dr Lynne Riley and at least one other doctor. You know you’re in trouble when you go in and see a box of tissues in front of you.
“I can only remember two things she said to us, ‘I’m not going to beat around the bush’ and ‘Great Ormond Street Hospital’ for Children (GOSH).”
I went with George in an ambulance to GOSH whilst Ed went to tell Fred what was going on. He was four at the time and being looked after by a friend. George had a shunt surgery the next day to help relieve the pressure building in his brain. We were in complete shock and it all felt very surreal. Two days later, he underwent a seven-hour operation to remove his tumour. It was probably the longest seven hours of our lives.
“I remember being outside, filling time whilst our little boy was in theatre, and thinking how loud everything seemed compared to the quiet of the hospital.”
Thankfully George’s op went well. His surgeon, Mr Dominic Thompson, told us it couldn’t have gone better and was clearly pleased with the result. At the end of that week, on what was my birthday, we met with a consultant oncologist. This is when we found out George’s medulloblastoma was high-grade and realised the sheer extent of what was going on. It was difficult news because it meant he was going to have to start chemotherapy. That’s when GOSH became our home, with Ed sleeping there most nights and Fred visiting his little brother. My mum, who was all the boys had in terms of grandparents, came down from Yorkshire and we had a lot of friends and family visit too.
Some people were great and just threw themselves into doing whatever they could to support us, bringing food over or coming round to clean, but some didn’t know what to say or do, and there were those we just never saw again. The impact of childhood cancers, of any kind, is far-reaching, and not just for the immediate family. George’s cancer caused ripple effects for a lot of our family members and friends. Some found a way of dealing with it and made sure they were there for us, but others couldn’t; not even after George died. We encountered some amazing people along the way but, sadly, we found that a lot of our relationships ended as a result of the horrible situation we found ourselves in. Thankfully Ed and I are still very much together.
George’s treatment meant six rounds of chemo every two weeks. His first took place just before his second birthday. Between each round there were times he was susceptible to infection and others when he was really quite strong, so we were on high alert throughout. If he needed a platelet transfusion or spiked an infection, we took him to Barnet General Hospital, where Ed also stayed a few nights. This finished towards the end of February 2022.
Next George had six weeks of radiotherapy. We had to be at Middlesex Hospital in Central London for 6.30am every weekday so he could have an anaesthetic before getting started. For Ed, a protective father, seeing George get measured up for his mask on the first day was truly terrifying and he admits he lost it a little. In April the radiotherapy finished and George had another two rounds of chemo. By August his Hickman line was removed and, although he continued having check-ups at GOSH, we were finally able to return to some semblance of normality.
“Going from being so supported by medical professionals to suddenly being alone felt strange, but we were able to try and get on with our lives again.”
George started nursery in 2003. He was so young that trying to explain to him what had happened was really difficult, if not impossible. We were honest with Fred throughout though. He knew where we were and what was happening. We felt the worst thing we could do was hide anything from him or pretend everything was going to be okay.
“In the summer of 2004, a routine scan showed shadow on George’s spine, which was described as a nodule.”
He went back to have a lumbar puncture, which was pretty unpleasant and confirmed our worst fears, that his tumour had returned. The consultant did talk about the possibility of continuing some form of treatment but, knowing George’s prognosis wasn’t good and that he’d already had the gold standard treatment, which couldn’t be repeated, we decided to make the most of the time we had left with him.
“It seemed the doctors didn’t think George would make it to Christmas but, in fact, we had some really good months between September 2004 and September 2005.”
We did fun things as a family and took holidays together. We even got George, who hated sand, to walk on the beach and dip his toes in the sea. In autumn 2005 George went to school, where he attended reception class for a few weeks. Sadly, he was too unwell after that. It became very difficult for him to walk and from early October he was back home having daily visits from the Barnet community team. He died in Ed’s arms on the afternoon of November 9, aged five. It was calm and serene but the worst day of my life.
“George was full of life and love and light.”
He was a beautiful, mischievous, cheeky boy. Everything made him laugh and he had a wonderful smile. He lit up everybody’s lives. George was loving and always wanted to hug people, especially if it meant he could take their glasses off or tug at their hair. People loved him and he showed great love and affection to everyone he met. He brought a lot of joy to our lives and we were lucky to have known him. We think of him every day and he’s still very much a part of our lives. People often say they don’t know how we could go on after losing George, but we had Fred to think about. What option did we have? You have to carry on putting one foot in front of the other and see where you get to.
As a parent your job is to protect your child and keep them from harm, but brain tumours are something you can’t protect them from. We hope that with greater investment in research, families in the future won’t have to go through what we have. There will always be pain in life, you can’t get away from that, but we hope to be able to give more children a chance.
“Giving the brilliant scientists working on curing this disease more funding will bring a lot of hope to many families.”
Helen Newman
July 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by George's story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.