On 23 December 2019 five-year-old Oliver Dawe was diagnosed with a brain tumour in his posterior fossa. Oliver underwent a full resection to remove the tumour and the pathology confirmed a low-grade pilocytic astrocytoma. Thankfully, the schoolboy from Sheffield in South Yorkshire, has gone on to make a remarkable recovery, living a full and happy life. His parents are sharing his story to help raise awareness of the disease, which ripped through their family and, in December 2020, Oliver’s dad Nick joined Brain Tumour Research as a Trustee.
Here is Oliver’s story, as told by his dad, Nick…
My wife Wendy and I first realised there was something wrong in September 2019. It was the summer holidays and my wife Wendy had taken Oliver and his older brother Jacob out on their bikes. Oliver is a very sporty and active little boy, who loves nothing more than playing and being outdoors. It was on that bike ride that he first complained of pain at the back of his neck. We thought it was probably caused by being in an awkward position while he was cycling. It responded well to pain relief, so we didn’t think any more of it.
Over the next few weeks, however, he began to complain about neck pain more frequently. He would often mention it when he came in from playing outside. It felt like it was when we asked him to do something else, like have a shower or get ready for bed, that he would complain of the pain. We wondered if it was just an excuse to avoid doing something that he didn’t want to do. We started to question whether he was making it up as he would be normal one minute and the next, he would be expressing that he was in pain.
But Oliver is also a stoical child and not one to complain without good reason. Wendy is a GP and her initial thought was that it may be musculoskeletal. We also noticed that he was choosing to sleep with a big teddy under his head at night. With hindsight, he was probably using it to get himself into a more comfortable position in bed. By November, he had also started experiencing episodes of vomiting for no apparent reason. There was no pattern to these bouts of sickness but they were really beginning to worry us. On 18 November 2019 Wendy took the boys out to tea to celebrate her birthday. Oliver had been running around beforehand, true-to-form, but during the meal he became pale and quiet and he wasn’t interested in eating. On leaving the restaurant, he suddenly became distressed by the severe neck pain he was experiencing, describing it as the worst pain he’d ever had.
“The combination of Wendy’s medical knowledge and our parental instinct told us that something wasn’t right and so we made an appointment with our GP.”
The GP saw Oliver on 25 November. Her initial recommendation was that he was referred to a physiotherapist. Wendy and I were wondering, however, whether the neck pain and vomiting were parts of the same, more sinister jigsaw. So, instead of referring Oliver for physio, the doctor sent us to the orthopaedic spine clinic at Sheffield Children’s Hospital, just three miles from where we live. Between our referral and his appointment on 2 December, Oliver had been fine. The consultant did a full examination and found nothing of concern. He had also had some blood tests and the results came back completely normal. The consultant agreed, however, that something just wasn’t right and he referred Oliver for an MRI scan of his neck, which was scheduled for 27 December.
In the meantime, Oliver’s condition seemed to take a turn for the worse. We went to watch his Christmas play at school. He was playing the part of an angel and was dressed all in white. As parents, we should have been beaming with pride as we watched him take to the stage with his classmates but we were completely distracted by how poorly he looked.
“He had vomited before school that morning and was so pale, with bags under his eyes. Wendy and I agreed that he looked like a very sick child.”
Wendy emailed Oliver’s spinal consultant to update him and she asked if they could do an MRI of his head, as well as his neck. He came straight back and said ‘yes’ but that the MRI would consequently have to be delayed until January 2020. Meanwhile, through her work, Wendy discussed Oliver’s symptoms with various medical professional friends, one of which told her not to be afraid of taking Oliver straight to the Children’s Hospital A&E if she was concerned.
Then, on the last day of term before the Christmas holidays, a mum from school was picking Oliver up for a birthday play date with her son. When Wendy went to collect him from their house later that evening, she told her that their teacher had said a child had been sick in the classroom but nobody had owned up to it. Wendy suspected it may have been Oliver, and sure enough when she gave him a hug, she smelt it on his breath. Oliver hadn’t admitted to vomiting because he didn’t want to be collected early from school and miss the birthday party. He had some Calpol and within minutes was running around the house with the other boys, as if nothing was wrong.
“Oliver sat on her lap and said he had neck pain. It was heart-breaking for a mum to witness her son deteriorating like this, with no conclusive answers as to what might be the cause.”
He was his usual self over the weekend; we were with friends on Saturday 21 December for pre-Christmas drinks and Oliver seemed to be back to his normal self, even running the mile distance home after the party. The next day he seemed to be OK but on Monday, as we were packing to go away for Christmas, he vomited several times and was screaming in pain as he was being sick. We were due to travel to East Anglia for the holidays; Wendy’s parents live in Suffolk and her sister and family are in Norfolk. At the time I was working for the global medical device company Medtronic. Of the 17 years I worked there, the first 11 years had a consistent thread of neurosurgery. I joined as a sales rep selling neurosurgical drills and shunts for the treatment of hydrocephalus, and moved through various other roles. In my career I had spent countless hours in theatre watching neurosurgery take place.
“With my background knowledge, I began questioning Oliver more about his symptoms and I started to believe there could be a serious neurological issue, such as a Chiari malformation, a condition causing the lower part of the brain to push down into the spinal canal”.
Alarm bells were ringing and we decided we needed to go straight to hospital. Oliver was assessed by a triage nurse and we waited to see a junior doctor. The doctor was thorough with his examination but, due to the way Oliver’s symptoms presented, it was not surprising that he didn’t share the same level of concern. We just knew there was something seriously wrong. The doctor asked what we were worried about in particular and Wendy said she thought he had raised intracranial pressure because of ‘something in his head’.
It was decided that Oliver would be taken for a CT scan. I went into the scanner room with him while Wendy and Jacob waited outside. I have had scans myself in the past and you know when everything is OK because you just see the radiologist. I watched what was going on through the glass and when I saw various different people come in and spend what seemed like a lot of time looking at the scan, I just knew it was bad news. Oliver and I came out and the four of us sat together waiting. A few minutes later, someone came to take Oliver and Jacob away.
“Wendy and I were taken into a room with a soft couch and a box of tissues, where we were told they’d found a mass on Oliver’s brain. The consultant’s opening words, ‘I’m so sorry’, will haunt us for a long time to come.”
I remember asking how large it was and whether it was operable. All we were told was that it was a large mass and that the neurosurgeon was on his way to see us. The on-call neurosurgeon, was specialist consultant paediatric neurosurgeon Mr Shungu Ushewokunze. He was so wonderful, with such a lovely bedside manner. Wendy and I thought Oliver might have to have a shunt implanted that night, to relieve the pressure on his brain, but Mr Ushewokunze wanted to avoid him having that procedure before his major surgery to remove the tumour. He put him on a high-dose steroid to relieve the swelling that was causing his symptoms and buy us time to avoid operating over Christmas. In the meantime, he scheduled the operation for 27 December, giving him a few days to pull together his specialist team and ensure he had a full day of light hours in which to operate.”
“In spite of our absolute devastation at the diagnosis, we were reassured that the surgeon was doing all he could to ensure Oliver was in the best possible hands.”
Oliver was immediately admitted to the neurosurgical ward on 23 December and Wendy and I both stayed with him. He required his observations doing every hour through the night. Meanwhile, our friend, whose daughter is a good friend of Jacob’s, had Jacob overnight. We tried to sell it to him as an exciting sleepover with his friend but he was clearly very upset by what was going on. It was really tough for him; one minute we were all getting ready for a happy family Christmas in Norfolk and the next we were in hospital receiving shattering news about his little brother’s health. He coped amazingly well, considering.
The following day was Christmas Eve and Oliver had a more detailed MRI scan. The scan showed that the tumour was positioned against his cerebellum. It had a solid component and a large, cystic portion. The good news, from the surgeon’s perspective, was that it was completely encapsulated. He wouldn’t have to go through any healthy brain tissue to get to it. Mr Ushewokunze seemed happy with the plan and we came away feeling more positive than we had felt the previous day. He said he thought it looked like a pilocytic astrocytoma but he wasn’t able to give a firm diagnosis. After the scan, we decided we needed to get all the family up to Sheffield because, quite frankly, we just didn’t know what was going to happen to Oliver. My mum arrived from Buckingham and brought food for Christmas. Of course, our fridge and cupboards were bare, as we’d expected to be away for the festivities. Luckily, the steroids were having a positive impact on Oliver’s condition and he was able to come home for Christmas Eve and Christmas Day but we had to go back in on both nights, so he could continue to be monitored. On Christmas Eve when I drove him and Wendy back to the hospital, he laid a trail of reindeer food from where I parked the car to the hospital door. I remember driving him back to the hospital on Christmas Day and he said to me: ‘See Daddy, I wasn’t lying to you about my neck ache’ and it broke my heart.
“Oliver’s surgery was seven hours long; the longest seven hours of our lives. We stayed in close proximity to the hospital, desperately waiting for news.”
We met up with a friend for coffee. We walked around a lot. We ended up sitting in Starbucks next to the hospital waiting for the phone call. In that time, Wendy and I started to make some big life plans. My job at the time was very demanding and would take me out of the country every single week. I would usually spend at least three out of seven nights away from home. As we waited for Oliver to come out of theatre, I started to question how I could continue working in a role which took me away so much. It was a truly life-changing experience and I just knew that my priorities had changed and I couldn’t go back to my old life.
To our huge relief, we finally received the call to say the operation had been a success and Oliver was doing well in recovery. Things weren’t altogether straightforward, however, as he had obstructive hydrocephalus, as the tumour had caused a blockage of his cerebrospinal fluid (CSF) pathway. Post-op, his ventricles remained enlarged and he therefore still had raised intracranial pressure. It was expected that once the swelling had resolved that normal CSF drainage would be restored, however, he was having CSF leaks and a CT scan confirmed that his ventricles were still enlarged. They decided to perform a lumbar puncture to draw off excess CSF. This was firstly to reduce the pressure and secondly to see if it would help restore normal flow.
On 2 January 2020 he was discharged and we came home relieved to be out of the hospital and able to focus on recovery. However, that night he had a large CSF leak and we called the neurosurgery ward. We were asked to come back in and on 3 Jan he had an endoscopic third ventriculostomy (ETV). The two-and-a-half-hour alternative surgical procedure involved the creation of a bypass for the CSF in his head, eliminating the need for a shunt. It meant that in total he’d had three surgical procedures in the space of just a few days. He was so brave and strong throughout. The one thing he hated, however, was having a cannula fitted. He hated the pain of the cannula being in the back of his hand and the association that a doctor inserting it meant surgery was coming.
“Oliver was discharged from hospital on 8 January 2020. He’d not only missed a proper Christmas at home, but also Jacob’s birthday on 5 January and mine on 6 January.”
After a wholly disrupted Christmas, we wanted to try and make Jacob’s birthday as normal as possible and so I went ahead and took him to the Hot Wheels Monster Trucks Live event at Manchester Arena for his birthday treat, while Wendy stayed with Oliver. Once home, the first thing Oliver wanted to do was to play outside. He had a large bandage on his head, which he hated, as he said it made him really hot. Apart from that, he complained very little and was utterly bulletproof in the way he dealt with his recovery. When we look back at the videos we took at that time we can see that his balance was off, his speech was slurred and the steroids were really affecting his moods. But in spite of everything he soldiered on and seemed determined to get back to being the lively, fun-loving little boy that he always was.
On Friday 10 January 2020 we were back in hospital for the pathology results from the tissue sample they took during Oliver’s surgery. The results confirmed the best-case scenario news we were hoping for; the tumour was a grade 1 pilocytic astrocytoma. Grade 1 astrocytomas are usually found only in children and teenagers. They are the most slow-growing form of astrocytoma and carry the longest prognosis. That day, Oliver wanted to go to school and pick Jacob up and we decided we would let him, so he could see his school friends and his teacher, as we knew it would cheer him up a great deal. His class teacher had been amazing throughout. She was incredibly supportive and empathetic, even creating a photo book for Oliver and a child-friendly classroom display, to help explain his absence and what he was going through for his Year 1 classmates. He was desperate to go back to school as soon as possible. On 14 January he went back for just one hour and gradually, from there, we built it up with a phased return.
“By 2 February, just over a month after his surgery, Oliver completed a junior parkrun at Graves Park in Sheffield. He was just incredible.”
One of the biggest challenges post-operatively was trying to monitor Oliver’s balance and coordination. He struggled to keep his head up, due to the separation of his neck muscles during surgery. We couldn’t leave him to sit alone or go to the toilet alone, in case he fell. We took turns to share a bed with him at night in case he needed to get up, or became unsettled. Oliver had six physiotherapy sessions – some in hospital and some at home – in order to work on balance, coordination and strength. The tumour had caused a mild left-sided weakness and his balance was off due to the effect on his cerebellum. Other than these physio sessions, he just got on with life and took control of his own rehab in the same way that he approaches everything – at 100mph!
His community oncology nurse gave him a fatigue diary but he rarely wanted to admit he was tired. School took it out of him and we noticed he found it harder to concentrate than he did prior to his treatment. Then, in March 2020, just as Oliver had reached the point of attending school for half a day every day, with the occasional full day, the country went into lockdown and both boys stayed at home with us. It was a shame, as he had enjoyed being back at school, but going into lockdown was a fairly smooth transition, as he hadn’t fully adjusted back to the school environment. Turning our attentions to home-schooling, the most noticeable thing for Wendy and me was just how fatiguing he found learning and how impossible it was to hold his attention for more than a few minutes.
“Oliver would lose interest fast and move on to something else. We were also able to see how he found it challenging to learn new processes and it took him longer to grasp new concepts.”
In some ways, we had already been living somewhat of a ‘lockdown’, or at least a surreal existence since Oliver’s diagnosis and surgeries, so the change to all being home wasn’t really an issue. It was probably more felt by Jacob, as he had been leading the more normal life with school, clubs and friends. We tried hard to give both boys structure to their days and provide home learning. As Wendy and I were still off work, this was made a little easier, although I would never say that trying to teach one’s own children is very easy! The days would generally begin with a Joe Wicks workout as a family, then some learning, followed by the boys playing together, building dens and taking a family walk. We are lucky to have woodland over the road from our house, so we were able to escape to nature and give the boys the opportunity to burn off some energy. I think the biggest thing for us was actually spending time together, something for which we were very thankful. It was tough to be in each other’s pockets 24/7 but from where we had been months earlier, it was actually a very happy time just being together.
Meg the Hungarian Vizsla dog arrived with us at the end of lockdown. We had decided before the pandemic that we were going to get a puppy to bring a new positive focus into our lives. Lockdown meant that we chose her from the litter via FaceTime and we were all kept excited by regular photos sent to us by the breeder. She has fitted into the family beautifully and brought so much joy, after such a tough period. Another positive step Wendy and I took during lockdown was to seek professional counselling to help deal with the trauma we had been through. We have fantastic, supportive friends and family and, of course, we had each other but we both felt we could benefit from speaking to someone independent, to help process our thoughts and work through our individual challenges in rationalising and moving on from what had happened.
“During my first counselling session I was asked what I wanted to achieve from it and I replied: ‘I just need to know when it will end’.”
The truth of the matter was that nobody could answer that for me but over the course of six sessions, I have learned that I have to remove the pressure and give myself more time. As a parent, there is a tendency to blame yourself and question why this has happened to your child. I now realise that rather than it being a case of ‘why us?’, it’s ‘why not us?’. Brain tumours are indiscriminate and can happen to anyone at any time. I’ve worked hard on my mental health but there are times when I allow myself to have a wobble, as there are constant reminders of it, for example, driving past the Children’s Hospital.
“There are no hard and fast rules but I now understand that trying to fight the pain doesn’t always work and the reality is that it may be years before we can be at peace with what happened.”
In October 2020 we had a bit of a scare, as Oliver started to complain of neck pain again. Just like before, he was asking for pain relief and sleeping on his big teddy. He was due to have a routine MRI of the end of October but we brought it forward, as we were concerned about the risk of hydrocephalus. Thankfully, the scan was stable and Oliver has continued to go from strength to strength. He’s got back into his tennis, swimming and gymnastics. He has also become incredibly messy since his operation but we can forgive him for that! On the whole, he has recovered so well and so quickly. The challenge has been to slow him down. We suspect he may have very mild Posterior Fossa Syndrome (PFS), as he struggles with some emotional processing and definitely experiences mental fatigue. Physically, however, he’s fine and we couldn’t be prouder of how far he’s come.
In the end, I took the very hard decision to leave my career, as we just didn’t know how the future was going to look for Oliver. Instead, I chose to take some more time out to be with the family and find a suitable opportunity in a field I am passionate about. I have every intention of going back to a full-time role in the industry and look forward to starting the next chapter of my career. Throughout my career I have been inspired by the positive impact medical research and technology can have on the life of a patient, and since my experience with Oliver, I have wanted to find a way of contributing to support patients, families and research. I am delighted to have recently taken up the position of Trustee for Brain Tumour Research. I bring to the role not only my own personal experience but also the skills developed in my professional career.
“Having gone through the rollercoaster of emotions and taken time to recover and reflect, as I embark on this exciting new challenge, I feel energised to begin a new chapter.”
Oliver continues to have regular MRIs (at the moment they are six-monthly) to check for signs of tumour regrowth. He has had two so far this year; one in March, which was a post- op check to get a baseline on how everything looked and another routine scan in October. He is staying on six-monthly scans for the time being, but these will likely move to yearly until he is 16. At 16 years old he will go through what the hospital calls ‘transition’, when he moves from being under the care of Sheffield Children’s hospital to care at the Royal Hallamshire Hospital. They will then decide how they want to continue monitoring him. Either way, he has a minimum of 10 years of MRI scans ahead of him, so it is going to be a part of his life for a very long time to come.
As we approach the one-year milestone since Oliver’s diagnosis and treatment, we are focused on just one thing this Christmas and that is to enjoy it together as a family-of-four (plus Meg!) Christmas is unpredictable for everyone this year, as coronavirus continues to wreak havoc up and down the country. We originally planned to go all-out with a skiing trip for the boys or another special holiday abroad. We will miss spending Christmas with our wider family this year, but we are thankful that we can spend it together as a foursome, given how different things could have been. We’ll open presents together, the boys will play, we’ll enjoy Christmas dinner and take Meg for a walk. We want to find a way to make the boys feel really special. We attempted to go through the motions of Christmas Day last year but it was really awful. Both boys missed a traditional family Christmas in 2019, as it was completely overshadowed by the nightmare of Oliver’s brain tumour diagnosis. This year, whatever restrictions we may be under, we will be together, healthy and happy and that is all that matters.