Our Story - Sue Chapman

Our daughter, Emma Chapman was born on the 28 February 2000 and completed our family of four. My husband, my son Rob (who was at that point 6 years old) and myself. We settled down to a normal busy family life.

Emma was around three years old when I noticed, at times, she just seemed to stop as though a switch had been turned off; then a few minutes later she would be back to normal. Emma was Diagnosed with Idiopathic Epilepsy (which means no known cause) and put onto daily medication – it did not stop the seizures, but I think maybe reduced their occurrence. The whole family had to be vigilant as we never knew when a seizure would occur. Once she was halfway up a tall slide when I realised, she had stopped – her brother had to climb up past other children to get behind her and wait until she was back so he could move her forward and get her down the slide. As she got older, she would feel them coming and would often come find me and just lean on me, whilst I would tell her I had got her, and she was ok.  We came to understand that during the seizures she could hear but not talk or move – that must have been so scary especially if people tried to move her.

In early, 2005 I noticed a lump, and I took her straight to the GP who sent us to see a consultant at the local hospital. After examination we were told she was just fighting something off and was fine – later that night Emma complained of pains in her ribs – so the next day I went back to the hospital and saw a different consultant but was again told Emma was fine. I felt uneasy leaving the hospital, but I had been told twice she was fine.

A couple of months later we had moved to a new area. Rob started Secondary school and Emma a new primary school. However, a short time later I noticed two very dark bruises on the back of Emma legs – I took her straight to the GP who sent us to hospital to get blood tests. We were sent home later that afternoon and told they would ring us when the results where through. At six that evening we got a call saying the blood results did not look right and that they thought someone had made a mistake – we were to go back and stay overnight so they could take some more.  Later at the hospital, my husband took Rob home and Emma and I settled down for the night – I was worried as even more bruises were appearing. In the early hours the door was flung open and a doctor followed by three nurses and a trolly rushed in, I was told to sign the forms as they had to do an emergency blood transfusion  - the blood results were right and something was seriously wrong – I immediately realised Emma was in real danger – the doctor told me to call my husband and get him to come back.  We made it through, and the next day we were transferred to Alder Hey Childrens Hospital.

On the Monday morning, they took Emma to the operating theatre to undertake a lumber puncture and by the afternoon she was diagnosed with ALL (Leukaemia). Chemotherapy was started that very afternoon as Emma was very sick indeed.  We were two weeks in the hospital as they stabilised her – we were to learn the treatment was going to be tough and lengthy approx. 2.5 years which involved a year of intensive chemo treatment.

I took leave from work, and we all juggled things to keep things going at home; Emma’s grandparents also helped. As a family we also spent many days in hospital. When Emma had to be admitted, I would stay with her in a small hospital room and Emma would spends hours and hours drawing, colouring and undertaking craft projects, when she was well enough too.

We had some very tough weeks and 6 weeks in we were told they were not happy with the latest lumber puncture results, and they were going to start treatment again on a tougher regime. This really sums up the journey of ALL treatment - it is a roller coaster, two steps forward and some back but we kept going - we had no choice.