In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Larsen Roberts, from Sherwood in Nottingham, was just five years old when, in December 2019, he died from a rare, high-grade medulloepithelioma (MEPL). Larsen was initially misdiagnosed with a lazy eye, and later an optic pathway glioma (OPG). After doctors finally discovered the aggressive nature of his tumour, Larsen underwent extensive treatment, including a gruelling course of chemotherapy, which ultimately proved to be too harsh for his young body to handle. Larsen leaves behind his mum Holly, dad Lyndon and younger brother, Jesse. Holly is now campaigning for more funding for brain tumour research to help prevent other families from experiencing the same devastation.
Holly tells Larsen’s story…
Larsen was born on 21 September 2014, bringing me and my husband Lyndon so much excitement and joy. Alongside the jubilation, however, I was also quite an anxious new mum. From the early days of parenthood, I would worry about him and obsess over trying to give him the best possible start in life. When we started weaning him, I would do my utmost to get as many different fruits and vegetables into him as possible. As he grew into a toddler, we wanted to provide as many opportunities as we could, so he went to gymnastics, swimming and football, amongst other activities. I was an anxious mum but a devoted one too. I just wanted the best for Larsen.
Larsen was a very clever child. From a young age, I could tell that he had so much academic potential. At just two years old, he knew his numbers. I remember on New Year’s Day 2018, when he had not long turned three, he shared with us that his resolution was to learn to read and write. We wanted to help him achieve this, so we bought him the Oxford Reading Tree books and he loved reading them. He was even starting to do some phonics at his nursery. One day in March that year, however, the nursery manager told me that, unusually, he hadn’t wanted to read that day. She suggested that maybe I was pushing him too hard but I wasn’t convinced. I thought it was strange that he’d stopped wanting to do the thing he enjoyed the most.
“Over Easter holidays, when he was almost three-and-a-half, Larsen had conjunctivitis and while trying to clean it up, I discovered he had no vision in his right eye.”
He was referred to an optometrist by our GP and they said he had a lazy eye. We were then referred to the orthoptics service, which had been commissioned into the community rather than being at hospital, so our appointment was at the optician’s. At the orthoptics appointment, I felt as though they didn’t believe him when he said he couldn’t see the pictures they were showing him. It was really odd. I called the next day to follow-up and they also said it was a lazy eye. He underwent occlusion therapy for three months but instinctively I knew his diagnosis was wrong. Being the anxious parent that I was, I feared the worst, which included a brain tumour.
Larsen’s occlusion therapy involved wearing an eye patch on his left eye for four hours a day. It’s difficult for me to think about now. He would sit there with his patch on and listen to his audiobook or we would go for a walk, with his baby brother Jesse in the pushchair and Larsen riding on the buggy board. All the while he couldn’t see a thing but typical of Larsen, he never complained.
In July 2018, I contacted a private ophthalmologist. It was after I realised that Larsen’s vision wasn’t improving and he was struggling to distinguish light from dark. The ophthalmologist encouraged me to go back to orthoptics and say it definitely wasn’t a lazy eye.
“Eventually, through sheer persistence, I managed to get him referred to Queen’s Medical Centre (QMC) in Nottingham. It was a massive relief.”
When we went for the appointment at the end of August, the orthoptist immediately identified that something was wrong with Larsen’s optic nerve. She got more senior colleagues to come and look and within an hour, he was given a CT scan. The scan revealed a ‘lesion’ on the optic nerve and they said they wanted to send him for a more detailed MRI scan but it was the Friday of Bank Holiday weekend and they weren’t sure they’d be able to do it until the following week. I pleaded with them to do it sooner and eventually they agreed to scan him the next morning.
After the scan, the on-call consultant neurosurgeon said it was a low-grade optic pathway glioma (OPG) but that Larsen’s case would be discussed at a multi-disciplinary team (MDT) meeting a few days later. Nobody got in touch with me after the MDT, so I chased it and eventually we got an oncology appointment. The oncologist confirmed it was an OPG. She said she recognised that what we’d been through to get to this point was horrendous but that she was going to make sure everything was OK. She said they wouldn’t need to treat the tumour because it was low-grade and surgery would be too risky anyway. It was a case of ‘watch and wait’ and it would be three months until Larsen’s next MRI scan.
I wanted to believe what she was saying but I felt like I’d lost a lot of trust in the medical staff we’d come across. My strong preference was for them to attempt to remove it but she refused to consider that option.
“Larsen’s MRI scan was in November 2018 and it showed that the tumour had grown considerably, which the doctors weren’t expecting.”
The decision was made to put him on a course of low-dose chemotherapy. They said he would need 12 rounds in total. He had a portacath fitted, which is a small chamber beneath the skin. It felt so invasive but I told myself it was essential in order for him to get the right treatment. He went into hospital for his chemo every Monday and he was such a good boy. I think I felt more grief over it than he did.
Larsen’s next scan was at the end of February 2019 and once again, the images revealed it had grown. Yet again, I was desperate for them to consider surgery but the medical team kept pushing back, saying it wasn’t worth the risks involved. By this time, we had a CLIC Sargent social worker supporting us and even she was questioning the clinical decisions being made. She asked questions on our behalf but the response was that they wanted to continue the chemo for another three months, to give it more of a chance to take effect. Then, at Larsen’s next scan, they finally accepted that the chemo hadn’t worked. The tumour was growing fast.
In May 2019 Larsen underwent a biopsy, which was a brutal procedure. They cut across the top of his skull to access the tumour. Afterwards, his eye was swollen and his head was covered in bandages but remarkably, he recovered well.
When the biopsy results came back, there was no conclusive diagnosis. Finally, though, we got an admission that the tumour wasn’t an OPG at all; it was much more aggressive. During that consultation, I broke down. I felt so betrayed, having been told repeatedly that Larsen’s tumour was low-grade and not suitable for surgical removal. His oncologist admitted that my ‘mother’s intuition’ had been right all along and that if they’d done what I asked of them, we’d be in a very different place.
By this point, the tumour had grown so far down his optic nerve, it had become even more of a risk to operate but once we knew the severity of his disease, operating was the only choice we had and thankfully, one of the neurosurgeons agreed to do it.
“Larsen would have to lose his right eye during surgery. We were told that there was also a 70% chance he would wake up blind and if he didn’t lose his sight, there was a strong chance he would develop tunnel vision.”
One thing that struck me was the lack of psychological support. We were given no advice in terms of how to explain to our four-year-old what was going to happen to him. There seemed to be no process in place. I remember trying to talk to him about losing his eye and that there was a chance he’d have problems seeing when he woke up and he just looked at me and said: ‘Mummy, I don’t want to talk about that; it’s too scary’. It makes me cry to think about it now.
We weren’t allowed to stay in the hospital while Larsen was in the operating theatre. Having been told the surgery would last 11.5 hours, we went back to the hospital after 10 hours or so and they let us wait on the children’s neuro ward. After a while, a nurse came over, told us that it had finished and that the surgeons were coming to see us. At that moment, I thought he’d died. She didn’t tell us otherwise. I freaked out and collapsed on the floor. She said she’d go and ask the surgical team if they needed a nurse with them when they came to speak to us and as they said ‘no’, she reassured us that it meant Larsen had survived the surgery.
When we finally got to see the surgeons, they said it couldn’t have gone better. They’d managed to remove at least 99% of the tumour and they were sure that he had some vision. Larsen was taken to the high dependency unit (HDU) and within no time he was eating Haribo sweets and asking to walk himself to the toilet. He was alive and, miraculously, he could see. The relief was overwhelming.
Larsen was discharged after just two days and seemed to be doing really well. However, we’d only been home for 24 hours when things took a turn for the worse. He had a cerebral-spinal fluid (CSF) leak, which started as a tiny drip from his nose. We took him to A&E and they sent us to the neuro ward, where he was admitted. Lyndon and I took it in turns to stay at the hospital overnight. At 7am one morning, I got a text from Lyndon saying I needed to go in. I was terrified. I got there as quickly as I could and when I arrived, I discovered Larsen couldn’t speak. He was rushed into surgery, where they inserted an external ventricular drain (EVD), as he’d developed hydrocephalus, a build-up of fluid causing pressure on his brain. He also contracted meningitis twice in hospital. It was a very scary time and on more than one occasion I feared we were losing him.
The original plan was for Larsen to start radiotherapy two weeks after his surgery but that was delayed, as he had to recover from being ill and eventually, he had to have a shunt fitted too. In spite of all of this, Larsen remained in good spirits. He was discharged at the end of the summer holidays, which we were grateful for, as he was desperate to start school. I felt so relieved he could do that and we had a short period of feeling like it was all going to be OK.
Larsen had his six-week course of daily radiotherapy at Nottingham City Hospital, very close to where we were living at the time. They were really accommodating, allowing us to have a daily slot at the end of the school day. He would come home from school and scoot across to the radiotherapy centre. He didn’t want a general anaesthetic, which was so brave of him but it also meant he didn’t suffer the after-effects of sedation and was well enough to go to school the next morning. He’d listen to his favourite songs while he was pinned down to receive the radiation, lying perfectly still. No child should need the resilience to do something like that but somehow he did.
Larsen absolutely loved school. He did have some issues with bullies, who would call him the ‘one-eyed boy’ but the school dealt with it well and Larsen forgave them and even started playing with some of the children who’d called him names.
He finished radiotherapy in time for October half term and we spent that week doing lots of fun stuff. We went to Chessington World of Adventures and to an animal sanctuary in Cambridge and Larsen was the youngest child to ever fly a bird of prey there. He loved animals and conservation and developed a particular passion for birds of prey. He would spend hours watching episodes of Blue Planet and Our Planet over and over.
Shortly after half-term, Larsen had his post-radiotherapy MRI scan and we got the results the next day. The treatment had been effective on his eye but, devastatingly, the images showed new, inoperable tumours at the top of his spine.
“We’d almost come to expect bad news but it still came as a huge shock. At this point, we were told that Larsen was going to die.”
Larsen’s brain tumour was a high-grade medulloepithelioma (MEPL), a rare and highly aggressive embryonal tumour that occurs most often in very young children. We were told there were no more than 10 known cases of it anywhere in the world and as such, there was no standard oncology protocol to follow. As our options were dwindling away, we were asked to make the impossible decision of whether or not to go ahead with an intensive chemotherapy regime consisting of six different drugs.
Looking back, I can’t believe we agreed to this brutal treatment but what else could we do? Almost immediately, he suffered from the awful effects of the poisonous treatment. His hair came out. He had extreme sickness and diarrhoea. His kidney function was badly affected, meaning he wasn’t able to leave hospital. I couldn’t help but think: how have I allowed my child to go through this?
When his first round of chemo finished and before the next round began, we tried to use the time to make lots of special memories with Larsen. Some fantastic charities granted him ‘wishes’ and one of the things he chose to do was stay at a tiger lodge at Port Lympne Reserve in Kent. It was a perfect thing to do with Larsen, as he was so passionate about animals and loved big cats but I remember feeling so sad when we were there. It was nice but he was so poorly and I was trying to come to terms with the fact that we had a limited amount of time left together. When we got home from that trip, he had to go straight back to hospital to have his second round of chemo.
We felt more prepared for it this time and initially we were relieved that his upset stomach had calmed down. But his kidney function got worse and worse and he had to have a catheter fitted. He swelled up and he looked awful. His platelet levels were incredibly low and he received a transfusion. He wasn’t talking to us. He was so poorly. At 10.30pm on 16 December 2019 he started having a seizure that just went on and on. A paediatric critical care outreach team had to come and resuscitate him. It was really violent. I just thought: ‘that’s it’. They managed to stabilise him on a life support machine and they took him for a CT scan. The next thing I remember is an on-call neurosurgeon came and told me that he wasn’t going to wake up. A nurse then came and said: ‘let’s get your husband’. I had to prepare myself for that conversation with Lyndon, already in the knowledge that Larsen was not coming back. They said he’d had a bleed on his brain and because his blood wasn’t clotting, it was fatal. He stayed on life support long enough for family to come and see him. The next day, Lyndon and I had to make the decision to allow the machines to be turned off.
“We waited until his normal bedtime and at 7pm, we said goodnight to our precious boy one last time. The machines were turned off and he died.”
The months that followed Larsen’s death are a bit of a blur. Everyone that reached out talked about how sad it was because Larsen had died. Which of course, it was, but I was also suffering so much grief and trauma because of the journey he’d been on leading up to his death. Even if he had survived that dreadful treatment, I would still have been grieving, to some extent, because of everything we’d been through. People didn’t seem to understand. Gradually, I’ve been able to channel some of my grief into raising awareness of the lack of options for brain tumour patients like Larsen. I reached out to Brain Tumour Research to get behind their petition calling on the Government to level up and stop the devastation caused by this horrendous disease. When the petition report launched in April 2021, I helped to raise awareness by sharing our story in the media, appearing live on BBC Radio Nottingham to talk about the cause.
We wanted our MP, Nadia Whittome, to be aware of the issues surrounding our loss, initially sharing with her our concerns about the orthoptics service being commissioned into the community and the way in which, we believe, this led to Larsen’s delayed diagnosis. More recently, I have engaged with her on a larger scale, which resulted in her asking the Secretary of State for Health and Social Care what steps his department is taking to improve outcomes for brain tumour patients. She also asked, on our behalf, what assessment he has made for the implications of his policies of the findings of the petition report on creating a dedicated levelling up brain tumour research fund.
We recently moved house from Nottinghamshire to Pembrokeshire in Wales. Staying in Nottingham was proving too painful. In the year leading up to Jesse starting school, I struggled with the emotional impact of applying for his school place. I couldn’t walk in the playground and see Larsen’s cohort. I didn’t want other parents to look at me and feel sorry for me. Maybe it would’ve been right for Jesse to follow in his big brother’s footsteps and to keep that connection but in the end, it was too awful for me. I didn’t want to take Jesse to the same places I took Larsen. If Jesse gets poorly, I can take him to a different hospital. My father-in-law has a caravan in Wales, which we used to visit with Larsen and we have many happy memories of being there with him. It’s scary but I needed a fresh start.
We may have moved away from Nadia Whittome’s constituency but I will continue to engage with her and other politicians to encourage them to address the injustices surrounding this disease. If more money was spent on brain tumour research, then perhaps Larsen’s consultant would have heard about it, perhaps they would have diagnosed him accurately earlier, and perhaps the treatment would have been kinder than the chemotherapy which ultimately killed 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 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.