Frank James Lee

2 min read

Frank James Lee, known as Little Frank, from Royal Wooton Bassett, Wiltshire, was just 13 years old when he was diagnosed with a glioblastoma (GBM). Frank first began suffering from nausea and headaches, before he collapsed suddenly one evening in 2017. He underwent two successful surgeries and bouts of radiotherapy and chemotherapy, however, the high-grade tumour continued to return. Frank died on 22 July, 2019, at the age of 15.

Here is Frank’s story, as told by his father Frank Lee…

Frank loved to be outdoors. Growing up he was such a sporty lad - football, boxing, clay pigeon shooting - anything he got into he’d give it his all. He was always keen to please, and he was a great older brother to his three sisters.

In 2017, when he was 13 years old, his symptoms started. He would get nauseous, and kept getting headaches after school for a few months. We took him to the doctors three times, but they never could say what was wrong, and even suggested it might just be his eyesight and to get tested. A brain tumour was the furthest thing from my mind, why would you think something like that?

One Saturday evening I nipped out to get a takeaway, but when I returned he was unconscious.

It was all such a rush. We got him to Great Western Hospital in Swindon before he was transferred up to John Radcliffe hospital in Oxford. They operated that night and through the early hours of the morning. 

We were in shock. Everyone shut down. We knew he was seriously ill at this point, but we didn’t know what was going to happen.

“We were told it’s impossible to know if there would be any lasting damage after the operation. The wait was horrible.”

When he came to, everything was perfect. You would never have known. We were over the moon. First thing he said was “where’s my dad?”, and then, “where’s my phone?”.

Frank and his father posing with a phone shaped birthday cake

We knew the tumour was a nasty one, but we didn’t want to question too much. We had to do what we had to do, we didn’t want to know anything else. We just knew we were going to do whatever we had to to get Frank better.

He underwent months of radiotherapy and chemotherapy and never complained, he was so brave. We were told by the oncologist that he was undergoing treatment that hadn’t changed in 20 years. How can that be right? We were stunned that there were no other avenues to go down.

“When the disease strikes, it doesn’t give you time.”

He was supposed to be going on a clinical trial, but things didn’t get moving quick enough. They operated on Frank again in February 2019, and once again he responded so well. He was up and about, going to concerts with his friends, you would never have known. He was no different to the Little Frank he had always been.

He would look to us as parents for assurance, and we were always there to give it to him. We were going to get him through this. Maybe, looking back, he was the one trying to stay strong for us. He never complained once.

After that second operation, we asked if there was any more treatment needed and the doctors said no, and to come back in three months. We thought we’d cracked it.

Frank with his father

But the tumour came straight back. They weren’t willing to operate a third time; there was nothing they could do. There was just no time. We were trying to stay positive, hunting for anything we could do.

That was in May. Frank passed away on 22 July.

“So many young people die of brain tumours, yet so little funding goes into research into the disease. It makes my blood boil.

I don’t understand it. Surely the government can do more to tackle this?

It’ll be five years since he passed this July. I find it so hard to talk about Little Frank, and a couple of years ago I’m not sure I would have been able to do it. But I know I need to in order to prevent more parents from losing their sons like we did.

Frank Lee

July 2024

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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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