Leighton's medulloblastoma story

It started with an ear infection

Leighton was a happy-go-lucky little lad who loved watching Thomas The Tank Engine and playing with his cars and trains. In November 2018 Leighton was walking to school with his mum and seemed to be unable to walk in a straight line. He laughed at his mum when she asked and said “I can’t help it”. Kerry noticed his ear was red and assumed it could be an ear infection. We took Leighton to the doctor and he was then diagnosed with a middle ear infection. There was a lot of build up in his ear, so prescribed some antibiotics. For the first few days he seemed ok, however his ear was still red and he just looked unwell and was being sick. At this point we took him to the hospital and yet again they said it was the ear infection.

Why were they not listening to us?

Over the coming weeks Leighton started to look paler and we noticed that his neck was arched, he would wake up in the early hours of the morning screaming in pain in his head and being sick. We went back and forth to the hospital and was eventually referred to a paediatrician. We were told that Leighton was suffering with tummy migraines and that can be managed with pain medication. We visited the paediatrician who carried out cognition and motor skill tests, to our surprise they said they didn’t know. Again we were sent away and told to keep a headache diary and manage with pain relief. We visited the medical teams more than six times, we requested basic bloods and a scan of Leighton’s head and was told it wasn’t necessary. It seemed like they were being dismissive of our concern’s.

The news a parent should never hear

Leighton became really withdrawn and just looked exhausted, he was struggling to eat and just took himself to bed and slept, waking and screaming. We felt completely helpless as no one was listening to our concerns. Leighton’s school was extremely supportive and equally as concerned as we were. On 12 February 2019, my wife received a call from school to say that Leighton had collapsed. As my sister was closest she went to school to collect him. I arrived home to find my boy lifeless and immediately drove him to our local hospital. All I remember is Leighton asking for his mum and really struggling to stay awake. They initially said they believed Leighton had sepsis, and began to treat him for this. As my wife arrived at the hospital they finally agreed to carry out a CT scan. At this point, we felt someone was finally listening to us. It was then the news was given to us, that Leighton had a 5cm brain tumour and a large build up of fluid which was putting pressure on his brain. This was all two days before we were due to attend a follow up meeting with the paediatric.

Our poor boy had been suffering for months

It took him to collapse at school in front of his class mates to be heard. We were immediately blue lighted to a hospital in Leeds where we were met by the on call surgeon, who told us that if they didn’t operate he would not be here. At 1am on 13 February 2019, Leighton was taken into surgery, to have the fluid drained that was causing all the pressure in his head. During surgery they placed an access point so that they were able to drain any further build up of fluid. As Leighton came round on the neurology ward he was like our happy little boy asking when he could go home while having his breakfast and not in pain. Later that morning we were met with one of the neuro surgeons, who told us that our boy would need to have further surgery in just two days time. Leighton was six years old and never complained about anything, that’s when we knew something wasn’t right yet – we were dismissed and now we looking at a second brain surgery.

When they removed the tumour

On 15 February 2019 at 8am, Leighton went into surgery for 13 hours, this was the longest and hardest time of our life, having to leave our two daughters with family and trying to balance being at home and the hospital was so hard. The call finally came through to the nurses station to say Leighton was out of surgery in recovery, we had a further hour to wait before he was transferred to the high dependency ward. We spent what felt like a life time there, as Leighton was just not coming round and he wouldn’t open his eyes. We finally made it back to the neuro ward a few days later and this is where we could see that Leighton had lost movement on his left side and could not speak and still not wanting to open his eyes. Our neuro surgeon explained that he had managed to remove almost all of the tumour. Leighton had posterior fossa syndrome which is why he could not speak and lost some of his movement. After a few days on the ward we were able to take Leighton out of ward and while waiting for the lift he shouted it’s too loud as there was a flurry of students leaving a lecture. That was the only time we heard his voice since surgery.

Medullablastoma and treatment

The following weeks Leighton started to become more alert and engaging with everyone again. Having daily physio, occupational therapy and speech and language. He even started school on the ward. During one of his lessons he was playing a word game and that is the day our boy spoke again. This was one of the most emotional days being able to hear his voice, even though it was clear the impact the surgery had on him. We awaited confirmation on Leighton’s diagnosis and was initially told it was a medullablastoma, a type of brain cancer. We were then introduced to the oncology team and radiotherapy team to discuss the plan. After just over a month, we were allowed to go home and then on 29 March 2019, we started 30 rounds of high frequency radiotherapy on Leighton’s head neck and spine. We were told that he would then require stem cell harvesting and four strong rounds of chemotherapy. Leighton had two rounds of stem cell harvesting which they used his own stem cells to help him recover during chemotherapy treatment. We had a target that we didn’t meet and had to hope we had enough. He also had to have further surgery to have his portacath inserted in his chest area in preparation for his chemotherapy.

The unknown and isolation

We started chemotherapy with no idea how it would affect him or if it would work because the type of brain tumour he had, the percentage of it working was low. Leighton was administered three types of chemotherapy which all came with terrible side effects. The worst being the nose bleeds, where on one occasion he was bleeding for over three hours and had to be taken by ambulance to the hospital. All of this going on and he continued to have all his rehabilitation. It wasn’t until the third round that Leighton became quite unwell firstly with shingles then getting mucositis which affected all of his mouth, right through to his bowels. This was the time we were not sure if he would be coming home. A few days later there were issues with his magnesium and calcium levels along with his heart beating irregularly. With constant spikes in temperature and being unwell we spent most of our time in isolation. The team on the ward were amazing, keeping him entertained with the play therapists, along with all the rehabilitation.

Cancer free but with side effects

In October 2019, we had our final round of chemotherapy. While the main treatment ended, we still had numerous scans and tests which all formed part of the five year program. Thankfully the radiation had done its job and got rid of the small amount of tumour. With each a scan, came scanexity hoping for positive results. We were finally given the official cancer free in September 2024. This was the most surreal moment to hear those words. Leighton is now 12 years old and after having to learn to walk and talk again, he still had weakness to his left side along with processing issues due to acquired brain injury through the surgery. He also requires daily injections for his growth hormones, thyroid medication as the radiation affected the pituitary glands along with medication for his adrenal glands. Along with this his hearing and vision have been impacted through the treatment. Leighton continues to have regular physio and occupational therapy to help support rebuilding his stability. Despite all of this he continues to smile and takes everything in his stride. Leighton is a massive Leeds United fan along with being a train enthusiast. As a family we are eternally gratefully to the surgeon who saved our son’s life and the teams at both hospitals. Leighton may still have his challenges but he has his life. He is a proud uncle to one-year-old Arlo and absolutely adores him. He has settled into high school who again have been amazing and has made some lovely new friends. Who knows what the future holds but Leighton has aspiration to become a train driver, so watch this space.

Phil, Leighton’s dad, March 2025

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