When Saxon Read (7), from Norfolk, was born, his mum Cara (28) immediately knew something wasn’t quite right. The birth was difficult, and Saxon had to be resuscitated but Cara could see her son was still struggling to breathe.
What Cara and the doctors didn’t know was that Saxon had inherited a condition called DICER1 syndrome -a rare genetic disorder which increased his risk of cancer.
At first doctors suspected Saxon had a chest in infection. Cara said ‘His breathing was always very laboured, and I kept saying something was wrong. When he was just a couple of weeks old, he got worse, he was sucking in his ribs all the time and really struggling.”
One night as Cara was bathing Saxon, he started to throw his head forwards and backwards as he breathed. He was immediately taken into hospital where doctors thought he had bronchiolitis and put him on oxygen. As a precaution they also took an x-ray of his lungs which revealed a shocking black mass on his right lung. “We were in hospital for five days,” added Cara. “I was in complete shock and the doctors didn’t really know what it was. They thought it might be trapped air which he would grow out of but they also said they could possibly consider surgery to investigate further once he was a bit older.”
Cara said she reluctantly took Saxon home but over the next few weeks he became increasingly breathless. “I took him back and demanded another scan and that evening I got a call saying the growth on Saxon’s lung had nearly doubled in size and was covering half of his lung.”
Saxon was taken in for an exploratory operation where surgeons discovered a tumour and later diagnosed the youngster with pulmonary blastoma -a rare and aggressive type of cancer that affects the lung tissue. It occurs most often in babies and young children but can affect adults.
Cara added: “They removed the right lung and left what they described as a ‘sliver’ at the top of his lung so hopefully as he gets older it would stretch like a balloon and grow in size.”
Cara undertook some genetic tests and was found to be carrying the DICER1 gene, but, out of her four children, it was only Saxon who inherited the condition, she continued: ” It’s such an ultra-rare genetic disorder and doctors told me they had only heard of five other cases. Saxon had CT scans every 6 months and then every year until he was four. He also has regular chest x-rays and ultrasound on his kidneys because at certain ages having this gene can make you more likely to get certain types of cancer. It can come back in different ways so he has a care plan until his late adulthood because he is high risk but, so far, we have been very lucky because none of the tests have come back with bad news.”
DICER1 syndrome can cause tumours to develop in the lungs, kidneys, ovaries, thyroid, and other parts of the body which can be benign (non-cancerous) or malignant (cancerous.
Cara, who blames herself for passing on the faulty gene, continued: “When I found out it was essentially me that caused Saxon’s cancer it really hit me hard. I blamed myself every time he had to be sedated for a CT scan, every time he had a chest infection, I felt it was my fault. I’m just a normal person but my baby had cancer, and you just don’t think it’s going to be you or your family.”
Saxon recovered well from his surgery and enjoys running around with his friends, but he can’t do any extreme exercise. Cara added: “He’s such a lovely boy with a really good sense of humour. He knows he’s had cancer, and he knows he has had one of his lungs removed, I have always been quite open about that. The surgical scar is big and it gets bigger as he is growing and I don’t want him to be ashamed of it, I want him to be proud as he has gone through so much at such a young age.
“He’s obsessed with penguins at the moment and has 150 stuffed toys which he keeps on his top bunk. Penguins has always been his thing, and he calls himself the Penguin King. He’s doing just fine and the the future looks good, he just needs regular checks until adulthood.”
Saxon was nominated for a Cancer Research UK for Children & Young People Star Award by his mother who she said he was proud to receive it after his recent illness and on-going treatment. The Star Awards help to highlight some of the unique challenges faced by youngsters like Saxon that Cancer Research UK is working to tackle through developing more effective and less toxic treatments.
Every child nominated for an award receives the accolade, which is backed by a host of famous faces, including celebrity chef Jean-Christophe Novelli, TV personality Dr Ranj and children’s TV favourite Mister Maker.
There is no judging panel because the charity believes every child diagnosed with cancer deserves special recognition. The awards are open to all under 18s who live in the UK and have been treated for the disease within the past five years.*
As well as a star-shaped trophy, Saxon also received a £50 TK Maxx gift card, t-shirt and a certificate signed by the celebrities. His brothers received a certificate too.
Cara continued: “As soon as I heard about the Cancer Research UK for Children & Young People Star Awards, I put Saxon forward. He’s proud of himself when he looks at his Star Award – that’s really important to us as a family to acknowledge what he’s been through.”
There are around 380 new cancer cases in children and young people in the East of England NHS region every year.** but research is helping to save more lives.
That’s why Addenbrooke’s Hospital in Cambridge is one of the many centres across the UK taking part in groundbreaking clinical trials coordinated by our dedicated clinical trial unit for children’s cancers. These trials make innovative new treatments available to children with cancer in Cambridge and across the East of England
The charity’s scientists are driving forward progress to help ensure more children and young people can live longer, better lives, free from the fear of cancer. And thanks to some of their breakthroughs, children’s cancer survival in the UK has more than doubled since the 1970s.***
Cancer Research UK spokesperson for the East of England, Patrick Keely, said: “A cancer diagnosis is heartbreaking at any age, but it can be especially hard for youngsters. Saxon is a real star who has been through so much at such a young age and it has been an absolute privilege to be able to celebrate his courage with a Star Award.
“Cancer in children and young people is different to cancer in adults, from the types of cancer to the impact of treatment – and many may experience serious long-term side effects. That’s why we’re supporting dedicated research to find new and less toxic ways to beat this devastating disease.
“We’re urging people across the region to nominate inspirational children like Saxon for a Star Award now, so that many more can receive the acknowledgement they so richly deserve.”
The Star Awards are run in partnership with TK Maxx, the biggest corporate supporter of Cancer Research UK’s work into children’s and young people’s cancers. Since 2004, the retailer has raised over £45 million for vital research to improve survival.
Nominate a child for a Star Award at cruk.org/starawards
