Alex was diagnosed with leukaemia aged 3. His mum, Debbie, tells his story.
Alex was born in June 2006 and from the moment he appeared into our family he brought huge smiles to all those around him. People always seemed to stop and chat to him, whether it was in a queue at a supermarket or sitting in a café. He seemed to capture everyone’s hearts.
In April 2010 we noticed that he was more tired than usual and on our morning walks to and from nursery he was complaining of aching legs and feeling tired. Then bruises started appearing all over his legs. We were concerned but with Alex being 3 years old assumed that he had been falling over or bumping into things. He spent the May Day bank holiday with his grandparents and when Alex and his brother Ben came home on the Monday afternoon there were more bruises. A friend invited them round to play and when we collected them I remember saying that I felt something was not right and would make an appointment at the doctors the next day.
When I got to see the GP I explained my concerns, he looked at Alex’s legs and suggested we booked him in for some blood tests for anaemia. The following morning Alex came into bed with me and was screaming and crying but after a cuddle he seemed to go to sleep. When Alex came into the kitchen later for breakfast he couldn’t walk in a straight line and he wasn’t able to speak clearly or coherently. I called my mother in law in a worry and she came over. I arranged for a friend to take Ben to school for me and when I came back from dropping him off, Alex was screaming again and appeared delirious. I called an ambulance straight away and they took him to hospital.
When we arrived at A&E Alex was in a bed with tubes and monitors attached all over. Later we were transferred to a private room in the children’s ward where the consultant broke the news that Alex appeared to have leukaemia and would need to be transferred to QMC in Nottingham. The emotions that went through my body cannot be explained – there was anger, worry, fear and sadness but the overwhelming one was love and determination that we would get through this.
Alex was taken for a CT scan and this showed extensive brain damage. His white cell count was so high that blood was struggling to reach his brain. He was put into a medically induced coma while they decided on the best way to treat him. Alex was started on high dose chemotherapy straight away. Over the next 24 hours, he started fitting and his heart rate and blood pressures were dangerously high. The results of a MRN scan later confirmed that virtually every area of his brain had sustained damage. It was unlikely he would survive and, if he did, the most likely outcome would be that he was severely disabled.
We were advised to contact anybody that wanted to say goodbye. The Paediatric ICU provided fabulous support and arranged accommodation for the family, which allowed us to spend more time with Alex.
In the early hours he appeared slightly more stable so we tried to get some sleep and when we came back in the following morning Alex had had a good few hours, although he was still experiencing a few spikes in his blood pressure. After a long chat with the consultants on duty they all went home confident that we were over the worst.
However, that evening things took a turn for the worse and it was feared that the pressure in Alex’s brain, triggered by the bleeding and swelling, was causing major problems. The neurological team advised they could insert a “bolt” into his brain to measure the pressure. If this reached a certain level they would need to perform an operation to alleviate the pressure by removing the top of his skull. I explained to the doctors that they had already given him a slim chance of survival with an equally slim chance of a “normal” life, and that I couldn’t risk jeopardising that slim chance by inflicting life threatening surgery. The doctors understood but made it very clear that, if they felt it was in Alex’s best interest, they may overrule my decision.
The following days involved lots of tests and waiting. After 12 days in a coma Alex pulled his ventilation tube out. The whole ward seemed to freeze while we waited to see if he could breathe for himself – he did! Over the next few days he got a little bit stronger and was transferred to the High Dependency Unit. When a physiotherapist came to assess him we were all gobsmacked when Alex stood up with support and even managed a few steps. After several days he was transferred to the Children’s Oncology Ward and we stayed there for 5 weeks. During this time Alex was getting stronger day by day. He remained in hospital for 14 weeks in total, and we were eventually allowed home during the summer holidays. However, within 2 hours of being home, and in the midst of a welcome home party, his temperature shot to over 38 degrees. We were readmitted to Lincoln Hospital.
We have been in and out of hospital for the last 2 years and Alex has fought numerous infections including pneumonia, line infections, pseudomonas, chicken pox and shingles. He has had to have 3 different Hickman Lines due to severe infections and had tests for severe liver failure and suspected coeliac disease.
Shortly before Alex had been poorly he watched the film “Lost and Found” and loved it. When he woke from his coma, my mum bought him the book which came with a toy penguin, as featured in the book. He loved it and he took it everywhere, along with his favourite polar bear, Mowbray. I am so proud of Alex because throughout all the horrible times he has never once complained about going into hospital or missing friend’s parties. Everything that he does, he does with a smile on his face.
I nominated Alex for a WellChild award and on his birthday last year we found out that he had won the award. We attended the fabulous awards ceremony in September 2012, and you may well have seen him causing a stir about what he was going to say when he met Prince Harry. He was on the front pages of the papers, and all over the news. We call this the “ALEX EFFECT” – you see, it stems back to my first paragraph – everyone that Alex meets, he captures their hearts.