gaps:line Volunteers Tell Their Stories

Angie's Story

Gaps:line: What were the first signs for you that something was not right with you child?
Angie: Charlie, who was only three at the time, had a severe cough, that wouldn't clear up, even after antibiotics. He had previously had asthma. I noticed he was pale, tired and unsettled and that the top of his mouth was raw.

How did you feel?
Obviously I was concerned and although I was unsure of what it was, I knew something was wrong. I twice saw a GP and was told there was nothing wrong. I wasn't happy with this but when I asked for a referral, I was told I was paranoid. Eventually a dentist spotted there really was a problem. I felt so relieved that, at last, someone had listened to my concerns.

How did you first learn that Charlie had cancer?
The dentist sent us to the ear, nose and throat department at our local hospital. We were sent right to the front of the queue. After a long chat with a doctor, blood samples were taken. The next day I was told they was abnormality in Charlie's blood and sent to Addenbrookes Hospital at Cambridge, where after seven hours he was diagnosed with leukaemia.

What was your response?
Naturally, I was sick with worry but I was also angry at the GP for telling me there was nothing wrong, when I had known there was a problem. At the same time there were positive thoughts that we were going to beat this disease. Yes, I can remember there were very mixed feelings and I was really up and down emotionally.

What sort of treatment did he have?
First, there was introductory chemotherapy, followed by a hundred weeks of treatment (Yes, nearly two years). There were two initial blocks of five days, followed by an eight week program of experimental treatment. The rest of the time there was maintenance chemotherapy between the blocks, thirty three lumbar punctures and a Hickman Line being put in.

How did you feel about this?
Obviously, I was very concerned for Charlie and how he was feeling, even though he was only three. Even though I was still so involved with caring for him, including being involved with the doctors and nurses and administering drugs whilst he was at home, I still felt it was so important to support others whilst they were working through the nightmare. I think this was because I really appreciated all the support I was given.

How did you hear the 'all clear'?
We've never had the 'all clear'. All we've been told is that each year is another year gone. Yearly check-ups give me confidence for the new year ahead, so we just have to move forward with positive thoughts.

How did you react to that?
Even to this day (over twelve years on), I still worry. So, when does the worry stop – NEVER!

How did you come to be involved with gaps:line?
I was approached by gaps:line, just before it started up. One of the nurses involved in Charlie's treatment put my name forward. It sounded really rewarding so I decided to apply to become a volunteer.

How did that make you feel?
I felt totally honoured to have been asked. Although counsellors were available at hospital, they would never know how parents actually feel. You have to go through it to understand. Knowing that now I am there for others and able to support them, makes me feel very happy.

What is it like being a gaps:line volunteer?
When it's my turn to be on line, just logging on and awaiting calls is enough for me to know it's right.

What do you feel about being a gaps:line volunteer?
It is rewarding and gives a sense of achievement, knowing I would be there if someone should need me.

Where are you and Charlie today?
We live each day as it comes but do so positively.

How does that leave you feeling?
I'm proud of Charlie and his achievements. Now we're both focusing on the future.