In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Roux Owen was just four weeks old when he was diagnosed with a rare brain tumour, the size of two oranges. Roux, now 17 months old, has spent more than six months of his young life in hospital, enduring 10 brain surgeries at Leeds General Infirmary. After his fifth operation, his parents Amy and Antony were asked to consider stopping treatment, as consultants feared Roux was too weak and his tumour was growing at a rapid pace. However, Roux wasn’t ready to give up and neither were his parents. They persevered and after a shunt was fitted, Roux battled on and had more surgeries. His most recent scan revealed no remaining tumour and the brave toddler continues to go from strength to strength.
Roux’s dad Antony tells his story…
Just like with our first baby, Noah, my wife Amy had a relatively straightforward pregnancy with Roux. She was diagnosed with gestational diabetes, which meant she was invited for a lot more scans. One thing that the scans revealed, was that Roux’s head size jumped significantly over the weeks. At the time, the midwives and doctors didn’t think it was any cause for concern. We were just expecting him to be a big baby. With hindsight, I think this could have been the first sign that something was wrong in his brain.
“Roux was born at Hull Royal Infirmary on 1 October 2019, weighing 9lb 11.5oz. It was a normal birth but very quick. We were immediately smitten.”
I felt complete. Before Noah was born, fulfilment for me mainly came from work (I’m an assistant headteacher of a secondary school in Hull) but once he came along, I felt like I had a real purpose. Noah made me a better person. Roux then arrived and made me feel full and I had never been so happy. We were truly infatuated with our family and our special little boys.
Shortly after Amy gave birth, we noticed that Roux’s left eye appeared to be swollen. He was checked over by the doctors and they sent us home, reassuring us that it was probably related to the trauma of birth and was likely to settle down. Two weeks later, however, it was still swollen. We went to see our doctor and he thought it was an eye infection. I didn’t agree, as I knew it had been there since he was born. There were other signs that something was wrong. He wasn’t feeding properly even though the breastfeeding experts said his latch was fine. He was also sleeping much more than you would expect of a new-born baby, up to 20 hours a day. When he was awake, he would be very irritable. He was losing weight and not passing stools.
We took him to our local paediatric assessment unit and they did lots of tests but found nothing, other than they thought he was slightly jaundiced. The doctor took a swab from his eye and we were told we’d be notified if anything came back from it. When we went home, Roux’s condition worsened. He would spend a lot of time screaming and screeching. I’d just gone back to work after my paternity leave when I came home one day and noticed that, even after a few hours, his head seemed to have grown in size. We rang 111 and they encouraged us to take him into A&E if our instinct told us that something wasn’t right. Our gut feeling was that he needed medical assistance, so we rushed him to Hull Royal Infirmary.
“Shortly after arriving, we saw a nurse who asked whether Roux’s head had always been that size. My heart stopped and my stomach dropped. I knew then that my concerns about his head size weren’t ill-founded.”
When we replied: ‘no’, we were moved into another room and doctor after doctor came in asking us questions. Roux was placed on a little incubator bed and examined in more depth. I knew something was seriously wrong. I heard murmurings of meningitis and Roux was being administered antibiotics just in case. Roux was then sent for a CT scan. You could see the sadness on the faces of the staff and other patients when they saw this tiny little boy going in for a scan. A short while later, as Roux was being cared for in the resuscitation area, we were given the devastating news that the scan showed a “shadow” on his brain. Tears streamed down our faces. We were overcome with shock and disbelief. My immediate thought was that it sounded like he had a tumour. An ambulance came to take him to Leeds General Infirmary (LGI). Because his condition was so critical, we weren’t able to join him in the ambulance. My dad picked us up and took us, as they didn’t want us to drive. When we arrived, we were taken into a room and a doctor came through to speak to us. She informed us that Roux was very ill and that his life was in danger. She said he had a massive brain tumour. They’d already put a needle in his skull to drain some fluid and relieve the pressure in his head and he was getting prepped for emergency surgery, which they hoped would save his life.
“We signed the consent forms, terrified. Reading between the lines, it felt like we were also being asked to prepare for the worst.”
We were inconsolable. I couldn’t stop crying. I couldn’t formulate words but I do remember saying to my dad: ‘please Dad, I can’t lose him’ and repeating that over and over. He must have felt so helpless.
Roux was in theatre for several hours, during which time the neurosurgeon relieved some more of the pressure in his brain and performed a biopsy. When we eventually got the results back from histology, they revealed Roux’s tumour was a large, low-grade germ cell tumour (GCT) called an immature teratoma. This tumour-type is made of cells that look like those found within a foetus in the womb. It contained a mixture of mature and immature cells. 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 spent the next couple of weeks either on the Paediatric Intensive Care Unit (PICU) or in theatre, having more surgery.”
Although we weren’t able to hold or cuddle him, as he had tubes and cannulas everywhere, Amy and I barely left his side, living in the hospital with him, and taking it in turns to go and see Noah whenever we could. Noah, who was two at the time, was mostly being looked after by his grandparents. We fell into a routine but it was awful having to spend time away from him while we stayed at Roux’s bedside.
Amy had only given birth four weeks prior to all of this and I was guilty of forgetting that. It’s one of the many reasons why I’m in total awe of her. She’s so strong. Much stronger than me. How she dealt with this so soon after giving birth is unbelievable. Roux’s fight certainly comes from her.
During surgery number two, they managed to remove 20% of the tumour and belief that he might survive grew. But the tumour was vascular, which meant it bled a lot and therefore surgery had to be stopped prematurely, as Roux wouldn’t tolerate it. Surgery three came along; more tumour was removed and we were down to about 25% of the tumour remaining, according to the surgeon. Roux fought hard and belief grew again.
In November 2019, we got some disappointing MRI scan results. They showed that the tumour had started to grow, as had the cysts. To relieve the pressure, he had to have another needle inserted through his fontanel to drain some of the fluid. He was then taken into theatre for his fourth surgery. This operation lasted 10.5 hours. We spent another torturous day pottering around the city centre, trying to pass the time. Back at the hospital, we waited by the phone for news. I was getting anxious and went for some fresh air and as I came back in, I bumped into our surgeon in the corridor. He said the surgery had been difficult but that it had gone well and that he believed he’d ‘got it all’. Of course, we were happy, but we weren’t ready to celebrate. I think we just knew. Afterwards, Roux went back into the PICU, where he took a turn for the worse. His heart rate plunged, as did his blood pressure. His tiny little bed was saturated in fluid, a mixture of blood and cerebrospinal fluid (CSF). There were doctors and nurses surrounding him, frantically trying to stabilise him.
“It felt like we could be losing him. Amy and I held each other tightly and just prayed he’d pull through again.”
They managed to stabilise him but it was decided he needed to go back into theatre for emergency surgery the next day.
Surgery number five involved no tumour removal; it was all about relieving pressure in Roux’s skull and clearing out a blood clot. This was successful. This time Roux had an addition of an external drain (ED) from the top of his head draining away fluid. It all seemed to be working fine and after the operation his wound was healing nicely. The days that followed, however, were by far the worst we’d been through. Our surgeon came to see us and told us that the latest MRI scan showed that the tumour hadn’t, in actual fact, been fully removed. The remaining tumour was in the orbit of his eye, an incredibly difficult place to get to and they weren’t sure Roux could tolerate an operation again.
“At this point, we were asked to consider stopping his treatment and begin palliative care.”
We were invited into a meeting with a neurologist, a Macmillan key worker and an oncologist. They discussed the possibility of chemotherapy but there was limited evidence that it would work. They felt he was too weak to continue with surgery and his tumour was growing at a rapid pace. 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. The neurologist was also worried about his quality of life in the future and the potential for brain damage. He’d already had a stroke and was weak down his left side. She feared his brain may not develop further than that of a new-born baby. All of our hope had been extinguished but Roux wasn’t ready to give up and neither were we.
“We declined end-of-life options and said that as long as he was fighting, we would be fighting alongside him.”
It wasn’t long until Roux was back in theatre again. His sixth operation was to fit a ventriculoperitoneal (VP) shunt and to insert a Hickman line, in case he required chemotherapy. Thankfully, this procedure got his fluid build-up under control and gave him another chance at life, as he started to show signs of improvement. To our huge delight, we were told Roux would have an MRI in early January and then another surgery in mid-January to try to remove the remaining tumour. We were pleased to be able to bring Roux home for Christmas and New Year. We stayed at my parents, as obviously our house had no decorations or tree and we wanted it to be as magical as possible. Noah loved it and was spoilt rotten; even the ward gave him and Roux a sack of presents. We went home the day after Boxing Day and returned to a kind of normality.
At the beginning of January, we headed back to Leeds, in preparation for Roux’s seventh surgery on 14 January 2020. The operation went well. We received a call early evening from our surgeon and he explained that there was no tumour left. It was gone. It was ‘over’. Roux just had to pull through now and recover. We still couldn’t get carried away. There was no great emotional breakdown or outpouring of happy tears; we’d got too used to bad news following good.
Yet again, we were right to be cautious. The day after his operation he began screaming in agony from around 6pm. Nothing would alleviate the pain. Medicines which should have sedated him didn’t. The nurse looking after Roux was visibly upset. You could see how helpless she felt. Eventually, they got the balance right and he seemed happier and calmer. But as Roux was much more settled, his clinical situation had got worse. Roux needed breathing support and was put on oxygen. He had contracted pneumonia and he had some sort of infection. Everybody was worried. His lips went blue and he turned grey. A couple of days later the blood cultures came back. He had a line infection and a bladder infection. We later learned he had been showing signs of sepsis.
He stayed on the high dependency unit (HDU) for a few more days longer than planned. Once we were back on Ward 52 (a dedicated neurosciences ward in the Clarendon Wing), Roux continued to improve and his little personality began to come out, charming not only Amy and me but all the nurses and staff on the ward, who we’d come to know so well.
“The amazing team looked after Roux like he was their own and kept our spirits up when times were so unbelievably hard.”
By early February, we were finally discharged. At home, Roux was doing really well and we started to believe that this could be the end of our ordeal. He obviously wasn’t hitting milestones at the same time as his peers, having been in hospital for so many months but generally, he was doing great. Then, in March 2020, he had his first post-op MRI scan since being discharged, which unfortunately found that the tumour had started to grow back. It was a blow but reassuring that his team didn’t want to operate immediately, as they said the growth was slow and he could wait another three months for a follow-up scan. Meanwhile, the country had gone into lockdown, due to the coronavirus pandemic. While it was wonderful to be reunited as a family of four, it was a strange experience trying to settle into a new routine when we were in the throes of a global health crisis. All the friends and family who’d been desperate to meet Roux had to wait even longer to see him and have their first cuddle. A lot of things we wanted to do to help his development, we also had to put on hold. We’d love to take him swimming or to a soft play centre but we can’t do any of that at the moment. His rehabilitation care was also delayed because of the pandemic but he is now having NHS occupational health, physiotherapy (over Zoom) and play therapy. He sees a dietician and we pay for private physio as well. His schedule of medical appointments is relentless but necessary to help him continue to recover.
“The upside of lockdown is that we have had the opportunity to enjoy some precious family time while we’re isolated together and the boys have bonded wonderfully as brothers.”
Roux had another scan in June 2020 and it was decided they would do an operation on 25 August – surgery number eight. The op was successful but afterwards he was suffering from sickness and diarrhoea, as well as a spiked temperature. At first, they thought it was a reaction to the surgery but it turned out to be viral meningitis, which he developed after his brain fluid became infected. Another surgery to remove his shunt followed, after which he had the ED fitted again to drain the excess fluid. He also had antibiotics injected into his brain, which gave him brain freeze because it was so cold. Once the infection was gone, they re-inserted the VP shunt, which was Roux’s tenth and most recent surgery. Roux was discharged from hospital on 1 October 2020; his first birthday.
Since then, Roux has gone from strength to strength. He is still being scanned every three months, to monitor his brain. The last set of positive scan results, which we received in February, were such a relief. They showed no evidence of any remaining tumour. Roux’s surgeon, Mr Paul Chumas, started to talk about transferring Roux’s care to Hull. He also mentioned the possibility of reducing his scans to six-monthly. This all sounds really encouraging. Mr Chumas is our absolute hero and words can never describe the immense gratitude we have towards him. He saved our little boy’s life several times. We had some truly awful times on Ward 52 but there are still many precious memories which we look back on fondly. Every single member of staff we came across cared so deeply about Roux and about us.
“We wholeheartedly believe that more should be done to fund research into brain tumours, so that in the future, other people don’t have to suffer like Roux did.”
Through our own experience, we’ve come all too aware of the stark facts surrounding the disease. When we came across the Brain Tumour Research petition, calling for an increased national investment into brain tumour research to £35 million a year, we were compelled to get behind it. This Brain Tumour Awareness Month we are helping to raise awareness by putting banners and posters up in our local area of Hessle. We have also created a “Roux’s Trail”, a fundraising treasure hunt for all the family to enjoy, with QR codes linking to brain tumour fact sheets. We are asking participants to kindly donate £5 to Brain Tumour Research at the end of the trail.
Roux has been left blind in his left eye and is at continued risk of tumour regrowth and seizures and has obvious development delays. But overall, he is a happy little character, who we feel incredibly lucky to have in our lives. We are unsure how Roux’s life will be impacted in the future as a result of the tumour; however, we do know that we owe that life to the incredible professionals who care for him.
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.
Together we will find a cure.