Parents praise Leeds General Infirmary staff as scans reveal their brave toddler has no remaining brain tumour
The parents of a toddler who survived a giant brain tumour “the size of two oranges” have praised Leeds hospital staff after the latest scan images revealed no remaining lump.
Brave Roux Owen, who is now 18 months old, had to undergo ten operations in just 11 months to remove the rare immature teratoma, a benign tumour that continues to grow.
Adorable Roux was just four weeks old when he was diagnosed with the tumour and his parents Antony and Amy were told to consider end-of-life care after his fifth surgery.
However, he battled on and was discharged from LGI on his birthday in October.
The tumour has left Roux without sight in his left eye and doctors believe he is a few months behind in his development.
But his happy personality has inspired his parents to hope that he will catch up with his development.
Roux’s mum Amy said: “Since then, Roux has gone from strength to strength. The last set of positive scan results, which we received in February, were such a relief.
“They showed no evidence of any remaining tumour.
"Words can never describe the immense gratitude we have towards Roux’s surgeon, Mr Paul Chumas, and all the doctors and nurses on Ward 52 at Leeds General Infirmary, where we spent many months.
“Every single member of staff we came across cared so deeply about Roux and about us.”
Roux was diagnosed with a brain tumour in November 2019 when he was just four weeks old after his parents became concerned that he was not feeding properly.
Doctors at Hull Royal Infirmary blue-lighted the toddler to LGI - more than 50 miles away from the family's home in Hull - for specialist treatment.
Antony said: “The doctor said that he had a massive brain tumour. They put a needle in his skull to relieve the pressure in his head and was taken into theatre for emergency surgery, which they hoped would save his life.
“We were inconsolable. I couldn’t stop crying. We felt so helpless.”
During this first operation, the neurosurgeon performed a biopsy, which later revealed Roux’s tumour was a large, low-grade germ cell tumour (GCT) called an immature teratoma.
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.”
Over the course of the next few weeks, Roux spent hours in the operating theatre, as surgeons worked tirelessly to try to remove more of the tumour each time.
Antony said: “After the fifth operation, they said that it was possibly time to think about end-of-life care. It felt like a hammer blow.
“Even though we could see that he was a really poorly boy, the news came as a shock. All of our hope had been extinguished but Roux wasn’t ready to give up and neither were we.”
Roux had a sixth operation to fit a ventriculoperitoneal (VP) shunt and to insert a Hickman line, in case he required chemotherapy.
Antony and Amy were able to take Roux home for Christmas and New Year.
At the beginning of January, they headed back to Leeds, in preparation for Roux’s seventh surgery on 14 January 2020.
Antony said operation number seven went well, adding: “We received a call early evening from our surgeon and he explained that there was no tumour left. It was ‘over’
“But we didn’t get carried away. There was no great emotional breakdown or outpouring of happy tears; we’d got too used to bad news.”
After eight major operations, the tumour was finally removed and he was beginning to recover back at his home.
But Roux was rushed back to hospital just weeks later when a shunt inserted in his head to remove excess fluid to reduce brain swelling became infected and blocked.
He needed another two operations to repair the shunt and drain fluid from his brain.
He also contracted viral meningitis, which he developed after his brain fluid became infected.
Another surgery to remove his shunt followed, after which he had the External Drain (ED) fitted, to drain the excess fluid
Once the infection was gone, they re-inserted the shunt, which was Roux’s tenth and most recent surgery.
He was discharged from hospital on 1 October 2020, his first birthday.
Antony and Amy, who are both teachers, have backed a petition calling for investment into brain tumour research to be increased to £35 million a year.
And they are supporting the Brain Tumour Research charity’s leading Wear A Hat Day on Friday, March 26.
Now in its 12th year, Wear A Hat Day has raised more than £2 million to help fund the fight against the disease by people buying pin badges in the shape of hats.
This year the charity has developed six new pin badges representing key workers’ hats.