In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Sylas Harrigan’s parents first became concerned about their son when he was 17 months old. Their usually happy and smiley baby had stopped smiling and laughing. When he also started vomiting, leaning to one side and holding his eye, they sought medical advice. Following several trips to the doctors, they eventually got a referral and a scan and the subsequent biopsy revealed a grade 4 medulloblastoma brain tumour. After three surgeries, the third one causing the toddler severe brain damage, there was nothing more which could be done to save little Sylas and he died just four months after his diagnosis, aged 21 months.
His mum Nicole tells his story…
When Sylas was born on 2 May 2018, it was the happiest day of my life. He was such a beautiful baby. We chose his name in memory of my husband Nils’ nanna Sylvia, who had become ill and died when I was pregnant. It is also a biblical name, which we like, as both Nils and I are Christians and were regular churchgoers at the time. I had to have a C-section, so when we got home, Nils did everything while I recovered. It meant the two of them also forged a really close bond right from the beginning. It was lovely to see.
Sylas never cried much as a baby; he was so good. I breastfed him and he was always hungry – I couldn’t keep up with his appetite, so we combi-fed him eventually. Nils and I got married a month before Sylas arrived and the three of us were living in supported accommodation in Chesterfield. It wasn’t our home town; I grew up in Barnsley and Nils is from Newark but we liked living in Derbyshire and were able to provide a loving family home there for our new bundle of joy. Life was great and we couldn’t have been happier.
Sylas was very advanced for his age; he started walking with his push-along at eight months and was an early talker too. He used to love climbing up to the window to shout ‘hello’ to people as they walked past the house. ‘Hello’ was his favourite word. We didn’t go to many baby groups together, as I found them a bit cliquey, so we spent a lot of time just the two of us at home and I loved it. We would watch Sesame Street – Sylas particularly enjoyed watching episodes in Spanish! We used to sing together; he knew all the words and actions to Heads, shoulders, knees and toes. His big appetite continued into toddlerhood; he loved a full English breakfast and was adventurous with his food, even trying seabass at a very young age. He liked brushing his teeth and bath-time. He was the perfect little boy.
“In October 2019, when Sylas was 17 months old, we started to notice a few things that didn’t seem right.”
He was usually such a cheerful and smiley baby but we noticed that he was barely smiling or laughing anymore. We thought, at first, he may have been teething. He was also struggling to settle at night, which wasn’t like him. Then we noticed that his balance was off; he would lean over to one side and grab his eye. He was also being sick. It wasn’t long after he had had his jabs, so we wondered if it was a reaction to that. There had also been an outbreak of mumps in Derbyshire and we were worried, so we called our GP. The GP receptionist advised us to go to the chemist. When we got there, the pharmacist said we’d been given the wrong advice and told us back to the doctor. We managed to get an appointment, not at our usual surgery but at Ashgate Medical Practice Royal Primary Care. A paramedic saw him and checked him over. He thought it might be an ear infection, which would explain the balance problems. That was on a Friday and on the following Monday we went back to see our own GP, as he was no better. He said it wasn’t an ear infection but that it might be fluid on the hips, possibly caused by a viral infection. We were advised to give him Calpol and Nurofen and watch and wait for two weeks. When Sylas’ condition worsened during that time, Nils rang the doctor again and took Sylas back in.
“This time he was really insistent that we needed a referral to a paediatrician, as his symptoms were getting worse.”
We were given an appointment at Chesterfield Hospital a few days later. After asking lots of questions and carrying out lots of observations on Sylas, the paediatrician said he had detected alarming symptoms, which he called “red signs”. We were admitted to hospital immediately. We didn’t know what was happening but it was all very worrying. Nurses were coming to do regular observations and then a neurologist came in to see us. She said she dealt with conditions such as epilepsy. Sylas was given antibiotics, which seemed to perk him up, and we were told he would have a CT scan the next day, so he couldn’t have anything to eat.
The following day my mum and my sister Laura came to see us at the hospital. Sylas went for his scan and an hour or so later the neurologist took Nils and me into a separate room, away from the rest of the family, to tell us that they had found a tumour the size of a golf ball on Sylas’ brain. We were in complete shock. I couldn’t understand how this could be happening to our baby. We went to tell our family and Nils called his brother. An ambulance came to take us to Sheffield Children’s Hospital. I’ll always remember Sylas seeing my sister as we left the hospital and he said ‘auntie Laura’ for the first time. It was really touching.
It seemed to take a lifetime to travel in the ambulance from Chesterfield to Sheffield. When we got there, we were given a private room. The doctor did some tests on Sylas’ eye. He was so alert and didn’t seem to have any vision problems. We were told that he would need emergency surgery the next day, due to a build-up of fluid on his brain. He wasn’t supposed to have anything to eat but as he hadn’t eaten for so long, I asked if he could have a little something and they gave him some dry toast, which helped get him off to sleep.
“The surgeon, Mr Shungu Ushewokunze, had to crack his skull open to get into his brain and insert a drain to remove some of the excess fluid. He went into theatre at 9am and he was out at 12.30pm.”
Sylas came around quickly from his surgery and it was a relief to see him looking so much better. We got him some sweet and sour chicken and rice, which he demolished, followed by yoghurt and a banana. He loved it! Nils and I were given accommodation in the hospital, thanks to the Sick Children’s Trust. It meant we were able to stay just minutes from Sylas’ bedside. One morning, when we came down, the nurse who’d been on duty overnight said Sylas was refusing his steroid medicine, as he didn’t like the taste of it. It was encouraging that he was being as cheeky as ever!
A few days later Sylas went into theatre for major surgery to try to debulk the tumour. He was taken for his operation at 9am and although we’d been told to expect it to be a long procedure, when we hadn’t heard anything by 10pm that night, we were beside ourselves with worry. I called to find out what was going on and was told that he was fine but that there had been an equipment failure, which had slowed things down. He eventually came out of theatre at 2.30am the next day and was taken to the High Dependency Unit (HDU) to recover. Mr Ushewokunze came to see us and explained that in spite of the challenges they’d had with the equipment, he had managed to remove up to 50% of the tumour, a sample from which would be sent off for biopsy. Sylas was doing well but he was on a high dose of morphine and was ‘out of it’ for much of the time.
“After three days he was well enough to go back to the neurology ward. He didn’t like the bright lights, so I would ask for them to be switched off, as I could see he was in discomfort.”
His drain also kept leaking, so he had to go for scans, so they could try to find the cause of the leak. There were some happy times on the ward; Sylas was visited by play therapists, who came to cheer him up and keep him entertained. On one occasion a lady came to do messy play with him, which he didn’t like it at all. It was Rice Crispies and yoghurt; he couldn’t understand why he was supposed to be playing with it and not eating it! He loved watching the Super Simple Songs channel on YouTube. I messaged them to let them know how much he enjoyed their videos and they sent him a special one with a personal message just for him. It was lovely
After another few days, Sylas was taken into theatre for his second major operation to debulk the remainder of the tumour. This time he went in at 9am and was out by 6.30pm. To try to pass the time waiting for news, Nils and I headed into town and bought some food and drinks to give to the homeless. Nils had done voluntary work for the homeless before, through his church, and it was a really positive way of staying busy while we waited. Towards the end of the day, I got a phone call from the surgeon to say that Sylas was alright but he asked us to go back to the hospital as soon as we could. This worried me. When we arrived, Sylas was still in recovery.
“The good news was that he had managed to remove another 40 to 50% of the brain tumour. The really bad news was that his midbrain had been damaged in the process.”
I was distraught. I just wanted to see Sylas and sing to him, to see if he would respond. We had to wait ages but eventually a nurse came in. She was laughing and joking around and I was furious. How could she be so jovial, given the news we’d just had? We walked over to Sylas. He had an endotracheal tube (ET) in his mouth, which was allowing him to breathe, as he couldn’t breathe on his own. I started singing Amazing Grace. Nils joined in, along with his brother and sister-in-law, who’d come to be with us and to see Sylas.
I went outside for a cigarette and to try to clear my head. It must’ve been around midnight when we went back in to see Sylas, by which time he’d been moved onto the HDU. Nils and I were so angry when we saw him pinned to his bed with his drain on the floor. We both knew that it needed to be higher up. We asked for a different nurse and spent all night by Sylas’ bedside, praying for him. He was in a sort of coma. His surgeon, Mr Ushewokunze, said they’d never seen such a complex case as Sylas’ and that he never wanted to see one again.
Sylas was a fighter and in spite of the severe brain damage, he did show small improvements each day and every so often he would take a breath on his own, especially when I sang to him. We moved onto the ward and on one occasion a consultant switched the machine off that was helping him to breathe and he managed OK for a short while. He went for an MRI scan to assess the damage and sadly, it only confirmed what we already knew. The damage was extensive and he wasn’t going to get better.
“At that point, they talked about moving him to a hospice but we were desperate to bring him home, so that’s what we did.”
On 9 November 2019 we brought him home, knowing that he didn’t have long left. His intubation tube was removed the day he came home, and he never had to have it back in, as he managed to keep his own airwaves open. He did really well at home but he required round-the-clock care. We lived in a second floor flat, so it wasn’t easy but it was worth all the hardship to have him at home with us, surrounded by love. We would sing to him and pray all the time. We saw small improvements in him, as he began moving his arms and legs and making grunting sounds. He was even able to come off all of his medication. We had a lovely time making memories, with walks out in the buggy and play therapists coming round to see us. We were able to enjoy a family Christmas together too.
Then, in February 2020, he started being poorly and was having fits. On 20 February, we ended up back in hospital with him. We were on the oncology ward and it was awful, as you could hear other kids crying and screaming through the night. Those sounds will haunt me forever. On Friday 21 February 2020, we were given our own big room.
“We knew Sylas was coming to the end of his life. We stayed with him all day, cuddling him, telling him we loved him and singing to him. At 8.45pm (his usual bedtime) he took his last breath. Our hearts were broken.”
We took him to a special room in the hospital. We booked a taxi, stopping off for two big bottles of spirits on the way home. We went home, drank both bottles and went to sleep. On the Monday we had to go and register his death. Unfortunately, they got his date of birth wrong on the death certificate. We still haven’t fixed it, as it costs £90 and we can’t afford it at the moment.
Sylas’ special day was on 5 March 2020. It was perfect. He had a white horse-drawn hearse and a burial service at St Michael’s Church in Brimington, where Nils and I got married. Lots of people came to pay their respects. Some of the family didn’t really know how serious Sylas’ condition was and his death was a huge shock to them. We hadn’t shared all the details with everybody, as we are quite a private family. Besides that, everything happened so quickly from his initial diagnosis to his passing.
We were lucky to be able to have the service for Sylas before the country went into a national lockdown, as things would’ve been very different if it had happened a few weeks later. On the other hand, living under the COVID-19 restrictions put a lot of pressure on my relationship with Nils. We found it very difficult spending every moment at home together while we were grieving. It was so tough seeing each other upset every day. Under normal circumstances, we would have been going out and seeing friends and family to try to take our mind off everything but as we were stuck at home, we couldn’t. It was like a pressure cooker. Eventually it all got too much and I went to stay with my sister in South Yorkshire and I just saw Nils at the weekends. I mentioned to my sister that it would be good if Nils and I could move closer to her and my other family and luckily, through a contact of hers, we found a private rental in Goldthorpe near Barnsley. We have since moved into our new house together and are much happier to be living near family.
“Things are still very up and down. One minute I’m fine, the next I can’t stop crying. I had some grief counselling at the beginning but I didn’t find it particularly helpful, as it just brought back all the bad memories.”
I am determined to keep Sylas’ memory alive. We have a commemorative bench for him in the garden and above the fireplace there is a canvas picture of him. Nils also bought me a light-up moon with a photo of Sylas and me together. We have a little duck ornament to remember him by; ducks were his favourite animal – he would always say “quack, quack”! I enjoy talking about him and remembering all the wonderful times but sometimes a certain photo can set me off. It’s really unpredictable.
When I look back at what we’ve been through, I am so grateful to the team at Sheffield Children's Hospital, especially Sylas’ oncologist Dr Vicki Lee, and Paul and Lindsay, the nurses who came to see us at home; they were absolutely fantastic people. Louise from Clic Sergant was an absolute godsend. Sylas' GP Dr Worthington was brilliant as well; even after his passing, he continued to see me and Nils and treat us for depression, anxiety and PTSD. I will never forget the care our family received from the NHS throughout this time.
I’ve recently signed up to do the 10,000 Steps a Day in February Challenge, to raise money for Brain Tumour Research. It will be really poignant, as it will coincide with the first anniversary of Sylas’ death. I’ve always enjoyed walking but haven’t done much recently, so this will be motivation to get out of the house and do something positive. I’ll be joined by my friend, who lost her nine-year-old cousin to a brain tumour. We have beautiful countryside walks on our doorstep, which we really should take advantage of. I also feel that it is something that I can still do for Sylas, having been stripped of my motherly duties and looking after him. When I joined the 10,000 Steps Facebook group, set up by the charity for the participants, I was saddened to read so many other stories of loved ones lost to this awful disease. More investment is desperately needed to prevent more families from going through the same heartache and devastation as us. Sylas would have been turning three in May. I’m so proud to be his mummy. I’m doing this for him; my superhero.
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.
If you have been touched by Sylas’ tragic story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
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