A brave toddler who underwent 13 surgeries after being diagnosed with a rare brain tumour is getting ready for his first day of nursery school. Parents Amy and Anthony Owen say they couldn't be prouder of two-year-old son Roux, especially after fearing he would never get to reach the milestone.
The youngster was diagnosed with a large, low-grade germ cell tumour (GCT) called an immature teratoma in October 2019, leaving his family heartbroken. Over the last three years, he has undergone 13 significant thirteen operations and spent several months in hospital.
After his fifth procedure, his parents were urged to consider end-of-life care, but were determined not to give up on their little warrior. They have also been working alongside charity Brain Tumour Research to raise awareness of his disease.
Anthony said: “It felt like a hammer blow. All of our hope had been extinguished but Roux wasn’t ready to give up and neither were we.
“We are so happy that Roux will be starting nursery. It’s a day we never thought we would see, especially when we were told he was probably going to pass away.”
On Tuesday September 6, Roux will start at the Little Jumping Beans Nursery in Hull, which is on the same site as Thorpe Park Academy where his mum, Amy, works. Antony added: “This is such a big step forward for Roux and we think it will do him the world of good.
“Because Roux is also a ‘pandemic child’, his interaction with other children has been limited so nursery will help his social side. He does lack confidence because he can’t see a lot of things. He looks really cute in his little nursery fleece that has the badge on.”
Nine months ago, Roux started having seizures. He has been put on different medications, but Antony says that he may be resistant to the drugs.
He said: “The seizures are the worst part of all of this. They are so unpredictable, and he may have five in a day. Afterwards, he’s totally wiped out and it’s knocking Amy and I for six.
"I just feel sad for Roux, and it can be tough to see other children his age moving on and hitting different milestones. We just want him to have a decent run where he doesn’t have any seizures or hospital appointments.”
When Roux was born, Amy and Antony noticed that his left eye was swollen. Anthony, assistant headteacher at The Marvell College in Hull, said: “The doctors reassured us it was probably related to the trauma of birth and was likely to settle down.
“When it was still swollen two weeks later, we went to see our doctor and he thought it was an eye infection but there were other signs that something was wrong. He wasn’t feeding properly, and he was sleeping much more than you would expect of a new-born baby. When he was awake, he would be very irritable. He was losing weight and not passing stools.”
Antony and Amy took Roux to Hull Royal Infirmary Accident and Emergency where he had a CT scan which revealed a “shadow” on his brain. Roux underwent emergency surgery at Leeds General Infirmary (LGI).
Antony said: “We breathed a sigh of relief when we were told it wasn’t high-grade, but it was still an invasive tumour, large and extremely rare. It was located in his mid-brain, making it difficult to get at and it was around 10cm long, covering a quarter of his tiny brain.
"It had cysts on it that were causing immense pressure. The doctors could only find one other identical case of it anywhere in the world.”
Roux had a shunt fitted to drain excess fluid, and he had a Hickman line inserted, in case he required chemotherapy. The procedure got his fluid build-up under control and gave him another chance at life, as he started to show signs of improvement.
He spent months in hospital; during that time, he contracted pneumonia, had a line infection and a bladder infection, and he contracted viral meningitis after his brain fluid became infected. After his tenth surgery, he was discharged from hospital on October 1 2020 which was his first birthday.
Anthony said: “Roux has been left partially blind – he appears to be ‘winking’ with his left eye – and is at continued risk of tumour regrowth and seizures. But he’s an incredibly joyful and happy little boy when he’s not in hospital. He lights up the room and you can’t help but smile when you are in his company.”
Hugh Adams, Head of Stakeholder Relations at Brain Tumour Research, said: “We are so pleased that Roux will be starting nursery school and we all wish him the very best for his first day. He has already been through so much, so this is wonderful for him and his family.
“Brain tumours are indiscriminate. They can affect anyone at any time. Too little is known about the causes and that is why increased investment in research is vital.”
Brain Tumour Research funds sustainable research at centres across the UK. It also campaigns for the government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
To donate to Brain Tumour Research, visit its website.
Don't miss the latest news from around Scotland and beyond - sign up to our daily newsletter here .
