Alex’s Story by his Mom Debbie

Alex’s Story

We had noticed some bruising on Alex’s legs so we took him to our GP on the 4th May 2010. The GP thought that Alex perhaps had anaemia. He recommended that we visit the Accident and Emergency unit at our local hospital if the symptoms didn’t improve.

That evening, we gave Alex his usual bedtime bath with lots of bubbles – and he screamed the house down. He usually loved his bubbles so by this point, we were getting really concerned. He went straight to sleep that night, without any fuss or bother.

At 6am, I woke to Alex’s screams. He would be in distress for around 10 minutes, then settle for another ten, then scream again. He seemed to be drifting in and out of consciousness and was having problems walking, so we knew something was really wrong.

I called an ambulance who rushed him straight to A&E. Within two hours, Alex was diagnosed with Acute Lymphoblastic Leukaemia and transferred to Nottingham’s Queens Medical Centre’s Paediatric Intensive Care Unit. By 5pm that same day, he was in a medically induced coma.

Alex’s white blood cell count was 688 – his blood was like treacle and his brain was being starved of oxygen. A normal white cell count is between about 4 and 11 so Alex’s count was huge.

He had a CT scan which showed many areas of brain damage. He needed to have chemotherapy straight away and the only place the haematologist could insert the tubes was into Alex’s heel. It was the only part of his body which would respond.

Over the next couple of days, doctors remained very concerned about Alex’s health. He was sent for an MRI scan which showed lots of blood clots on his brain.

We were told that our son’s chances of survival were less than 5%. If he did survive, the chances of him not being severely disabled were even less. We were also advised that if there were any relatives that we wanted to see Alex, then it was best to phone them straight away.

Alex was experiencing huge problems with his blood pressure and heart rate – they believed that this was due to the pressure in his brain being so raised. He then had a bolt inserted in his brain so that the Doctors could monitor the pressure accurately and treat him accordingly.

At one point, his left pupil blew and staff were very concerned that the pressure was spreading down to his brain stem – if this happened, then it would be even more likely that we would have to say goodbye to our precious little boy.

Miraculously, over the next 10 days, Alex started to show slight signs of improvement and they started to reduce his medication.

After two weeks, Alex woke from his coma and removed his ventilator himself. After a few more days monitoring and an allergic reaction to some of the medication, we were transferred on to the Children’s Oncology Ward.

There are days when we forget that Alex is unwell – then there are days which are still really hard. He was admitted to hospital just before Christmas 2011 with a very high temperature and a possible infection – luckily he was OK but the worry is always there.

Our little boy is a miracle story. He is doing amazingly well now and there are no obvious signs of the brain damage. There are some slight psychological areas and mild learning difficulties – but we don’t know yet whether this is because he missed so much school or a side effect of treatment / brain damage from the bleed. Alex’s treatment is due to finish in July 2013.

During this whole time, auto pilot kicked in. My parents were on holiday at the time but were on their way back when we told them the news. They were a fantastic support.

Mum moved into our house in Lincoln to give Ben, my eldest son, some stability. Ben was 5 ½ years old at the time. We were at hospital in Nottingham for 14 weeks, and Mum gave up her own life and friends to help us. My Mother & Father in law were also on hand to pick Ben up from school so that my Mum could visit us in Nottingham.

Between our parents, they had Ben’s childcare all sorted so that we could concentrate on Alex. Ben stayed with friends and family at weekends, and was absolutely brilliant. We never had any problems with him whilst Alex was in hospital – he was doing really well at school and never complained. Once Alex came home, it did take some time for Ben to adjust.

Alex needed lots of attention, but we worked hard to ensure both our boys were given as much attention as the other. We over compensated really I think. We wanted to give them as normal as life as possible, so there were lots of treats – we just had to find a way of making things better where we could.

Alex is five years old now and doing really well, but we have to keep reminding ourselves of the improvements in survival rates for children with leukaemia. We’ve reached the half-way point in his treatment and we’re counting down to July 2013.