Oliver was just the best son you could possibly wish for – bright, sporty, kind and so witty. We loved, love him with all out heart. In April 2007 Oliver had started saying his legs hurt at night in particular and because he was very tall for his age and had always suffered with cramps I put it down to growing pains. He was always bruised on his legs from sport and so there was nothing new there but he did lose his colour and went very pale.
I took him to the doctors just thinking he might be a bit anaemic as in every other way he was completely fine. We were sent for a blood test that morning and went home. At half past one my GP rang me to tell me to take Oliver straight to hospital and I just burst into tears – I had no idea why but I could tell something was very wrong.
We went to our local hospital where Oli was examined. We were told that his blood count was very low, nothing was showing in his blood under the microscope but Sheffield Childrens Hospital wanted us to go there for better testing.
Even walking onto the oncology ward I still couldn’t really accept what was happening. Oli had started with petechia on his neck during this time and everyone was looking at us very knowingly and being super kind.
He was given a blood transfusion and taken down to theatre the next morning for a lumbar puncture. We were told that they would be putting chemo in his spinal fluid because it was highly likely he had what they were looking for (no one had said what they were looking for still at this stage).
A few hours later I was taken into a side room and my world fell apart. I was told Oliver had Leukaemia early stages but definitely there. They said he was the best age had the best type to get etc.. etc.. but I had to go and tell my 7 year old boy his hair would fall out and he would begin to look like all the children around him. Like I said he was a clever boy and he knew that this was not good.
I remember watching his little face trying to be brave and it broke my heart. I saw that face many times over the next five years and each time it didn’t get any easier.
Oliver had many complications and reacted to almost everything. We nearly lost him on many an occasion and it was very difficult for him to get through the treatment. We had to change his steroids after a few years but he was a fighter and he fought. After his three and a half years of chemo he was left with a damaged pancreas and had to have tablets with everything he ate but he dealt with that.
Everyone was so relieved that he’d managed to survive his treatment, the doctors included.
We had a big party and thought we could put it behind us. Two months later, Oliver began to complain of tired legs. He was a footballer and he couldn’t keep up anymore. I again said it was just his body recovering from the chemo but it got worse and worse. He went from walking slowly to being unable to move his legs at all.
My beautiful active boy was now in a wheelchair crying because he felt useless after everything he’d been through. He put on weight which depressed him and no one could tell us why he couldn’t move, his blood tests were fine.
He was sent to hospital for intensive therapy as they told us it had to be psycological. He tried so hard for them; they let him fall; they told us off if we tried to help. I can honestly say that was the worst month ever. He damaged his knee badly from hitting things when he fell. I never believed it was in his head and told them again and again. I knew my son and he wasn’t that way.
Eventually his oncology doctors said they would do one last test, a bone biopsy, which they did. February 2011 Oliver was re diagnosed it was back and this time in his spine too, hence why he couldn’t walk. Even then his blood tests were fine.
Treatment started immediately, we knew he’d never be able to do the relapse programme because of his allergies and problems so the only option was transplant.
This time Oliver was 11, he knew exactly what I was saying to him and what was coming and I watched his face fill with tears and then swallow it all down and say ‘well thats that then’. He knew I’d been crying and told me he’d be ok and not to be upset. What a star.
He struggled through his conditioning as we knew he would. His kidneys started to fail but he came through. He asked me one night whether he was going to die, I said I wouldn’t let that happen to him and he’d get through it.
He was transplanted July 2011 and all seemed to go well for the first three weeks and then everything that could go wrong did. He developed GVHD in his gut and skin; he had pancreatitis leaving him dependant on insulin; his liver and kidneys began to fail and they did a biopsy which bled causing three litres of blood to be removed from his stomach in emergency theatre. I had to sign consent to say he had a 50% chance of dying. We were up and down from ICU, he was on a ventilator, he just went from one thing to another. He asked to speak to me in private on ICU and told me he wanted to die because he had had enough. This was probably the last really coherent thing he said as his brain was slowly being poisoned.
My bright, active boy could no longer move or speak properly. He died on the 24th September 2011, 8 days after his birthday and four and a half years after this nightmare began. For him I know it was a relief but for me the pain will live on forever.
This is my sons journey 🙁
Frances Shaw x