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Alex's Story

Debbie’s son Alex was diagnosed with leukaemia when he was just three years old. Here, she shares her story:

Alex’s symptoms

It was a very unusual case and very sudden.

We had noticed some bruising on Alex’s legs so we took him to our GP on 4 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.

little boy

Alex’s treatment

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. Alex’s treatment is due to finish in July 2013. 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.

Side effects and a miracle story

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 sight 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.

He didn’t speak for about 6-8 weeks after he came out of the coma. He had no gag reflex and was fed entirely through a tube. There was one day that really sticks in my mind. I was unwell myself and staying at the local home from home, Billy’s House funded by CLIC Sargent, so my husband had gone to visit Alex on his own.

It was a really hot day, and the hospital was giving the children ice pops. Alex was given one too, as it would melt and hopefully he could swallow it. That morning, my phone rang and when straight to voicemail. When I listened to the message, it was Alex. ‘I love you mummy’ were the first words I had heard my son say in over 10 weeks. The floodgates just opened – I was just so happy.

When we ask Alex now about why his didn’t talk during this time, he just says that his throat was sore.

brothers

Family and friends were a great support

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 5.5 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 and 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.

mother and baby

The all-clear

Alex finished his treatment at the end of July 2013 and a week later we got the phone call to say he had the all-clear. I came off the phone and was crying for ages. It made me realise just how scared I had been. This summer was fantastic without having lots of trips to the hospital.

Family and friends came together to celebrate him being in remission. More than 100 people were at the Golden Eagle Pub in Lincoln High Street on October 26 for a party and to raise money for Children with Cancer UK.

The party raised around £3,000 and donations can still be made at www.justgiving.com/debbieandalexlogan

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