Alfie’s Glioblastoma Story

Alfie was only 3 months old when his dad noticed something wasn’t right. Read his full story told by his dad.

Something is not right

Rachel and I met when we were 21. We had been together for 3 months when she got pregnant and we were excited to welcome Alfie to the world. He was a healthy baby and had a normal birth.

During his three months check at the GPs the nurse pointed out that his head looked big for his age and that we should come back the next day to see the doctor. That same night the nurse called us and told us to take Alfie to hospital, she was worried and wanted him to be seen that day.

We took him to our local hospital, where a CT scan showed a large cyst. They escalated his case very quickly and we got transferred to Alder Hey in Liverpool. An MRI scan showed a tumour the size of an orange in his head.

The diagnosis

Alfie was diagnosed with Stage 5 glioblastoma. An adult would not survive this diagnosis, but children have the ability to beat this.

The doctors told us that he would have a 5% chance of surviving a treatment and if he survived, he would become seriously brain damaged. ‘’Take him home and enjoy him for a few days’’, they said.

We were both very young and had to learn a lot in a short period of time. But we were not willing to give up, we wanted to fight this. The treatment went ahead.

The treatment didn’t start until the next week therefore the hospital released him for the weekend. That weekend, we got married on Saturday, on Sunday we had Alfie christened, Monday he started his chemotherapy.

From childhood to teenage years

Alfie had a shunt in the front of his heat and remained in maintenance therapy from home for a few years. Regular check-ups reassured us that everything was fine, the only problem we kept having was the shunt. It kept getting blocked, a sort of glue formed around the shunt.

By the time he was 14, he had 65 operation and 48 shunts.

Alfie never complained. He was delayed, needed a wheelchair for long walks, but always tried his best. He needed lifting into the bath and was a big boy -we never complained either.

We went on to have two other boys Oliver and Jude and everything felt complete.

Everything was perfect for the next 3 years.

A big family trip

Rachel and I decided to get remarried and went to Dubai in March 2024, where we would also celebrate Alfie’s and my birthday.

Alfie hadn’t been swimming in 8 years due to his tubes. The doctors were advising to stop home chemo and took him off the treatment for 3 months off. This allowed him to go swimming in Dubai.

His shunt got blocked again and needed sorting before we went to Dubai, but nothing would stop us.

Alfie was my best man at our wedding and we celebrated his 14^th birthday.

This is a holiday we will treasure forever.

Better shunts

After our incredible trip life went back to normal. His line was fitted back in and then he started maintenance chemo again. We loved going hiking as a family, Rachel would carry his wheelchair, and I would carry Alfie and we loved it.

In 2022, doctors told us they couldn’t do anything else to stop the shunts from blocking. After some further research I found a place in Brazil that did larger shunts. We had them shipped over to the hospital, they got fitted and stayed clear for 2 years.

Sepsis

Rachel went away for a girls weekend; my parents came to stay with me and the boys. Rachel went on Friday, kissed him goodbye and said, ‘see you on Monday’. That night we went bowling with my parents and had a great time.

There was a wound at the back of his head and had been there for weeks. Bandages were in place to avoid having to replace that shunt.

On Saturday afternoon I could tell he wasn’t well. He started getting a bit moany and I tried to find out why. At the end of the day, he was a teenager and I partially thought that was part of it, so I allowed him to chill out a bit.

At this point there was no point sending him to the hospital, they would just send him home at this stage. I kept an eye on him throughout the day and thought it might be his shunt again.

Because he was a bit lethargic, I put him to bed around 7pm and I slept on the coach; after having a takeaway with my parents. I knew something was wrong and kept checking on him. His little suitcase was ready in case we needed to go to the hospital.

I checked in twice during the night and he was consistent, last time I checked was 4am. I sat the alarm clock for 6am and decided to take him to hospital. Because it was a Sunday the usual doctors that knew Alfie were not around and I was told to avoid coming in to avoid Alfie having to wait too long.

His condition worsened, his skin developed a rash and he was very lethargic. I immediately knew he needed to be seen. I drove him to the hospital that morning. In the car his breathing changed, he said he was ok. I started crying, I knew this was different. His heartrate was very high when we arrived at the hospital and he seemed unconscious. After some medical attention his heartrate came back down.

That was when someone mentioned Sepsis. I didn’t know what it was and just wanted to know what was going on.

At 8am he went into a septic shock.

Rachel was on holiday and couldn’t get back.

At 2.30pm he passed away.

I had to tell Rachel he had to say goodbye over the phone.

That is how we lost him.

That was 21 months ago.

Life now

I had always been a casual drinker and felt that life could go one way or another. I made the decision that I had two sons to look after and didn’t want to let Alfie down. Ever since that moment I have not had a drink, instead I went to the gym and found my passion for running.

Now I run all the time and took part in several ultra marathons. I will never drink again, and we will live the best we can.

Recently we moved house, and our biggest condition was that we kept Alfie’s bedroom. We moved everything as it was in our old home and we feel like we have included him in our new home.

We get by daily.

Alfie’s Legacy

Alfie is mentioned in three books. Books we take to Alder Hey once a year to help other families going through their cancer treatment.

Because he had so many shunts, doctors were keen to do tests on him to develop their understanding of this type of brain tumour and how to develop a better treatment. We allowed this, as we were keen to help others.

It is incredible to learn that people going through this treatment now have higher survival rates, all because of the testing done on Alfie.

This could change the future of brain tumours.

London Marathon running

Several charities helped us on our journey and I always said, ‘one day I will pay them back’.

This year I am doing just that! Even though I got accepted into the ballot, I chose to run for Children with Cancer UK in memory of Alfie as well as in memory of my friend’s daughter who also passed away at the age of 4.

Alfie’s birthday

Today marks Alfie’s 16^th birthday. Today is difficult for all of us, but together as a family we will go away for the weekend. We will send Alfie a Micky Mouse balloon filled with messages and to celebrate his legacy we will try and make a Micky Mouse clay figure, and eat chocolate cake at 8am – he would have loved that.