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Stephen McGinley

written by

Leukaemia Care, Charity

  • Steve McGinley

Back in 1991 Steve McGinley’s daughter Helen was diagnosed with acute myeloid leukaemia (AML), aged just seven years old. Having initially been sent home with antibiotics to treat tonsillitis, a turn for the worse and a visit to A&E quickly confirmed the worst for Steve and his wife Christine.

Helen needed a bone marrow transplant and, at the time, bone marrow transplants were still in their infancy. Steve’s younger daughter, Claire, thankfully was a match and, at just eight and a half months old, became the youngest ever donor.

Here, Steve talks about his experience of helping his daughter grow up with the condition and how important a role a care line can play in supporting those who are going through a similar experience:

“What followed after Helen’s diagnosis was an immediate state of shock. And then you come through that and have to start dealing with the reality of it. Helen was transferred by ambulance to the Royal Marsden Hospital in Surrey, which is where we spent the next seven months going back and forth to her bedside as she received treatment.

“Helen had been at the Royal Marsden Hospital for four to five months when a contact number for Leukaemia Care was passed to me. Initially I called them to see if they could help us book a break away – we had spent most of our time within a hospital environment and the stress of the situation over the past few months had been all-consuming. 

“After that call I kept in touch with Leukaemia Care.  Initially, being a ‘typical male’, I wasn’t really one for talking, so I would call up only when I needed some specific information. But that voice on the end of the phone helped me to open up about how I was feeling, which until that point I hadn’t realised I needed. The hospital had looked after us well, but it was nice to speak to someone outside of that environment for a change.

“It was around that time that I discovered Leukaemia Care was looking for volunteers to start up a care line. Having found them such a great help to me and my family, I wanted to be involved and provide similar support to others who found themselves in a situation similar to ours.”

24 years on, Helen is now married and, until recently, worked as a doctor’s receptionist. She is currently suffering from the late effects of her treatment and is awaiting a kidney transplant.

Steve, meanwhile, has gone on to become a Trustee of Leukaemia Care after having been advised to make a call to the charity all those years ago, and to this day remains one of its long-standing Care Line volunteers.

“I still volunteer with the Care Line to this day. You can find out lots of factual information online that can be helpful, but only a telephone call – a real person on the end of the line – can ask that one extra question: ‘how are you?’

“The majority of callers are just looking for information, with roughly two thirds of those coming through from family or carers. So many people, especially these days, think through everything logically and forget about their emotions. I always answer their questions before asking that extra question about how they are feeling. It very often helps them to open up and have a conversation that they didn’t even realise they needed. It’s then that you can get an idea of how well they are coping, and you can begin to support them emotionally.

“I would always recommend picking up the phone and talking to someone.”