Paul's story

Paul Stephens, now 34, was diagnosed with leukaemia when he was two and a half years old. He’s an active fundraiser for leukaemia charities and is running the 2015 London Marathon for us. Paul shares his story, with some help from his parents:

‘It’s probably just a virus’

I was only two and a half at the time of my illness, so have little recollection of what happened to me. With the help of my parents, I will try and put this into words.

In December 1982, at the age of two and a half, I became unwell. After several visits to my GP my parents were told it was probably just a virus.

By mid-January 1983 I was still unwell. I was taken to my GP twice in two days with a high temperature. The doctor said I was obviously sickening for something and that I had a throat infection. I was prescribed antibiotics. The following day, because of my fever, I had a convulsion and was immediately taken to the closest hospital which was in Wordsley, Stourbridge.

On arrival my parents were told that I was very, very ill. While they were talking with the doctors I developed a rash. They said it was septicaemia and, that night, I nearly died.

Blood tests – lumber puncture – diagnosis

The test confirmed that I had acute lymphoblastic leukaemiaBlood tests were carried out and showed that my red and white blood counts were very low. I would have to have a lumber puncture test – it was possible that I had leukaemia, or some other form of blood cancer.

The test confirmed that I had acute lymphoblastic leukaemia. I remained extremely ill and was transferred to Birmingham Children’s Hospital, which was the nearest specialist centre in our area. I stayed in hospital for ten days.

My parents told me that during that time they nearly lost me twice more – the infection was causing heart failure. I received several blood transfusions of red blood cells, white blood cells and platelets as wells as further bone marrow tests.

Is it leukaemia or not?

My parents were then told that it was possible I didn’t have leukaemia since my blood had recovered so quickly. I was going to be monitored as an out-patient for a while to make sure everything was okay.

I attended Birmingham Children’s Hospital every three weeks until the middle of April 1983. Another bone marrow sample was taken and my parents were told that I did have acute lymphoblastic leukaemia after all. I returned to hospital the next day to commence my initial 12 weeks of intense chemotherapy.

It was a very difficult time for my parents. They had been told in January that I had leukaemia, a few days later that I didn’t have it, and then some three months later it was confirmed that I did have leukaemia. The doctors were very sensitive to this and my parents were treated with great compassion.

Treatment begins

So in April 1983 I began my initial 12 weeks of intensive treatment, including radiotherapy to my head.

I cannot remember a great deal about this, but I can remember going to hospital in Birmingham for my radiotherapy. I had to have a plastic mask made of my head. They did this by covering my head and face with plaster. You have to stay still until it dries. It was not a nice experience.

After the 12 of weeks intensive treatment I was in full remission. My mum says I coped well with the treatment but there were times when I was very sick and had to spend time in hospital.

Over the following three years I continued with chemotherapy. I had to have several breaks because of other infections. And half way through my treatment I had viral meningitis and my treatment had to stop for six weeks.

My three years of treatment ended in April 1986. In September 1986, after my final bone marrow sample was taken, I was given the all clear.

My parents were well supported

My parents say that through all my time in receiving treatment they were supported by doctors and nurses at the hospital. They were also supported by social workers from various children’s cancer charities. This help and support made life more bearable for them and my younger brother.

This is why I am so passionate about raising money for Children with Cancer UK. I would like to give back whatever I can, in the hope that it will give another family like mine the support they need at a most heart-rending time.

Possible long term effects of leukaemia on me

Some years later, when I was about 12, I was diagnosed with a condition in my left eye called Fuchs Heterochromic Cyclitis (FHC), as well as a cataract. There is no conclusive evidence that FHC is linked to the treatment I had for leukaemia. However treating very young patients with steroids can cause cataracts.

Having FHC and a cataract generated huge interest at the eye hospital – it is apparently quite rare to see both in one patient.

In 2009 I had to have an operation on my left eye to repair a detached retina. They removed the vitreous fluid from my eye and removed the cataract. Because of the condition in my eye it will never be correctable and I am told that later in life it can lead to glaucoma.

I want to give back what I can

In the early stages of my treatment my parents say there were eight children on the ward, and only two of us were treated successfully. Although treatment of cancer has come a long way since the early 1980s, there is still so much to be done to ensure patients have a chance to live a full life with minimal side effects.

I am running the Fleet Half Marathon in March 2015 and the London Marathon in April 2015. And I’m planning on taking part in the London to Brighton Trek for Children with Cancer UK too!

The Virgin London Marathon is the hardest thing I will have trained for in my life and something that will push my limits – but I know it will be for a great cause and your support really matters to me!

How you can help

If you’ve been touched by Paul’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.

This helps to support children with cancer so they can be with their families for longer.

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Have you or a family member been affected by childhood cancer?

Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.

If you have a story that you would like to tell, please contact us by email.

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