Alfie's medulloblastoma brain tumour story

It all started with headaches and vomiting

Some months before Alfie’s diagnosis he had been suffering with headaches, sometimes accompanied with vomiting. Alfie was always a sociable and popular boy at school but John and myself noticed he had become withdrawn from his peers. We then noticed Alfie was losing weight and seemed very tired all the time. We had raised concerns with our GP and paediatrician. On 16 September 2019, Alfie had an urgent MRI scan and on that day we were given the devastating news that Alfie had a brain tumour. That day our lives were turned upside down, we were completely heartbroken, devastated, numb and in shock. So many thoughts ran through my mind. I was scared and terrified that I was going to lose our beautiful boy Alfie.

“Your child has cancer”

Alfie was taken to a children’s hospital that evening and it was there that reality kicked in and we knew how unwell Alfie was. A few days later came the devastating blow from the doctors when they said; “your child has cancer”. I remember feeling like I had been kicked in the stomach and I heard nothing else from the doctor after we were told that. I think in my gut, I knew by then it was going to be bad, but you try to hold onto hope that it’s not or they have got it wrong. Alfie was diagnosed with medulloblastoma, a cancerous brain tumour. We were told that he had a 60% chance of surviving. Alfie endured surgery to remove the tumour, six weeks of radiotherapy and eight months of chemotherapy.

Alfie the prankster

Alfie has been through so much, he was diagnosed with posterior fossa syndrome following surgery and had to learn to walk and talk again. We were so proud of Alfie throughout his journey, he showed amazing resilience, courage and bravery but so did all of the children that we met along our journey. Alfie always had a smile on his face even when he felt unwell he would always be smiling. Alfie always wanted to cheer the doctors and other children up on the ward. He would come up with little ideas to put smiles on their faces by buying cakes and little gifts. He is also a bit of a joker. He loved playing pranks on the nurses. As a family we wanted to help other families like us. It isn’t until you’re hit with a child cancer diagnosis that you realise how important fundraising for charities like Children with Cancer UK and other children’s hospital charities is. Without their work, Alfie probably wouldn’t have survived a brain tumour diagnosis like this. That’s why we decided to fundraise during Alfie’s journey and with the help of family and friends we raised over £10,000 for these charities.

COVID-19 split our family apart

Alfie’s journey was incredibly difficult on us all as a family, at the time of Alfie’s diagnosis, Louie our other son, was only eight months and was cared for by his grandparents so that we could be with Alfie. We were then hit by the COVID-19 pandemic and due to restrictions only one of us could be at the hospital with Alfie and that was hard. Alfie and Louie went weeks without seeing each other meaning that we couldn’t be a proper family for months. It was incredibly difficult on so many families in hospital, but we carried on the best way we could. John and I had our struggles throughout Alfie’s journey. We learnt to cope by taking one day at a time, there were good and bad days. We had loads of support and at times Darcie was looked after by family, friends and the community. It was overwhelming how everyone came together to support us. We were so lucky to have that and we really wouldn’t have coped without it.

Ringing the end of treatment bell

Finally in October 2020, Alfie rang the end of treatment bell and as a family we were so thankful. What a journey. Alfie’s journey continues. Due to the aggressive treatment he received he has been left with some disabilities and is still trying to learn to walk. Alfie has been through so much but he has also overcome so many challenges and obstacles, He is amazing. We are so proud of Alfie and we are proud to be his parents. Louie and Darcie are also proud of their super hero big brother.
Kerry, Alfie’s mum, March 2022

Update: October 2023

We are coming up to three years since Alfie finished treatment and he is doing really well. He is now in Year Nine and is loving being back at school but this unfortunately does come with many challenges for him. Alfie is still on a reduced timetable due to extreme fatigue but he loves seeing his friends and enjoys Drama, Art and Science. School are great with Alfie and provide him with lots of support including his 1.1 support teacher.

Alfie had a busy summer enjoyed with a trip to the Lake District with family and then he was kindly invited on a sailing trip to Largs Scotland with the Ellen McArthur charity. Alfie spent four days sailing with other young people that had also been affected by a cancer diagnosis. Alfie enjoyed seeing dolphins, sailing the boat and had lots of fun enjoying games and activities. This was a great experience for Alfie and we are so grateful to the charity for giving Alfie the opportunity.

Alfie’s mobility and vision has been affected following his brain tumour diagnosis and he had to learn to walk and talk again. Recovery has been slow and intense including eight week’s inpatient rehabilitation but Alfie is now able to walk short distances with some support which is amazing, he still uses his aids for longer distances as his balance and coordination is still affected. We are so proud of how far Alfie has come! We have been trying out lots of different activities and hobbies for Alfie, before he was diagnosed he loved football and played for a local team, this is something he has really missed. Alfie now attends a PAN disability football group at our local football club which he is really enjoying. 

Alfie has just enjoyed celebrating his 14th Birthday with family and his small circle of friends, we had a great time at Ninja warrior and then a lovely meal with family. 

As a family we are still adapting and finding our new normal. Life after cancer still never quite feels normal but we are doing our best and appreciate the life that we have. Alfie and his family are still very committed and we continue to do lots of fundraising. Myself (Alfie’s Mom) and some friends will be participating in the Alton towers 10k in November to raise funds for children with cancer with a target of £1,000. 

Alfie has also been made a finalist with his local hospital in the category of “Young Fundraiser of The Year” after raising monies for the children’s ward. Alfie, me and John, Alfie’s dad, will be attending an awards evening at our local football club.

Kerry, Alfie’s mum, October 2023