The story of Tom Whiteley, who Tom’s Trust was set up in memory of, as told by his mum and one of our founders, Debs Mitchell.
Tom was a healthy eight-year-old boy, playing football and rugby and messing around with his two sisters and friends. He was happy and sociable and very handsome. Life was good.
In March 2010 Tom started getting headaches and throwing up. We just thought he had a virus but became more worried as it persisted, so we visited our GP. We were told that children get headaches, and to come back in two weeks if he still has them, so we just carried on with life.
A few days later I sent Tom to play tag rugby at school, and on the way home he told me that it felt like his neck was broken and couldn’t be fixed. I will never forget that moment. I told him not to be silly, and that it would be ok, but I took him straight back to the GP who told me that he was fine and sent me away again.
Two nights later, on March 26th – I will forever remember every hour, minute, and smell of this day – Tom was screaming in agony, saying that his eyes hurt, so we took him immediately to A&E where he was diagnosed with a huge Medulloblastoma brain tumour. We were completely shocked and devastated and could not believe what we were being told. Tom’s Dad passed out when he was told the news. There was no support, no one to tell us how to explain to Tom what was happening, how to deal with our other children, and no one to support us. We just held on to each other and cried all the time, trying desperately to pull ourselves together for the children. A certain amount was explained to us and then we were introduced to an oncology consultant, but we couldn’t understand why, because he didn’t have cancer and knew that this world just didn’t belong to us. I drove home to get some things for Tom, and sat in his bedroom holding on to his favourite dinosaur cushion. I remember seeing the most amazing rainbow on the way home. Our world had turned upside down and all the bits had fallen out. Tom had a successful resection of the tumour just five days after diagnosis and after another ten days in hospital, he went home. He could hardly walk, or balance, but we were desperate to get our little family back into our own safe environment and close the door. There was no psychological support, nothing. Not a phone call, an email, no contact, and suddenly we were at home with our child and everything was different and terrifying. It was Tom but he was so injured and in pain and confused and we were trying to be strong but, without a map of any kind, it was impossible. The only thing that they told us was that they would let us know more about the tumour in a few weeks.
When we returned to the hospital, we were pulled into a side room, another terrifying indication that our world was about to shift once more. They told us that the tumour was cancerous, and that Tom’s treatment would start immediately. Again, five medical staff and no one to support our mental health, or Tom’s. Just information overload, trauma overload. We spent the next months in hospital, constantly. Trying to keep our other children’s lives normal was impossible and they spent all their weekends in hospital with Tom. Tom’s Dad stayed by his side and didn’t go to work, even though he had only recently started his own business.
After Tom was given the all clear four months later, we went home. We were desperate to get his life back to normal, a new normal, playing with his friends, but he was different, his balance was poor, and he could not write as he’d lost all of his fine motor skills. He felt like Tom, he was Tom but everything else was different, as well as missing a huge chunk of his life in hospital where all of his friends had continued their own normal lives, Tom tried to slot back in. He had no hair, he looked different and he struggled to keep up with conversations. We were also nervous as parents and did not want to let him out of our sight for very long. It all felt very scary.
In September, at a routine scan, we received the devastating news in clinic that there was a spinal tumour and that he had only weeks to live. The news was given to us on the telephone. I sat on the floor and just could not get up. We didn’t even know how to get through the next minutes let alone digest the news that had just been delivered to us. We received no support at all, nobody helped us as a family to deal with the news, nobody told us how to explain to our other children that Tom was going to die. We relied on family and friends for support and we just fumbled our way through the whole nightmare. Tom died on my 44th birthday aged just 9 years old. We all held his beautiful little hands as we said goodbye.
As a parent it is my responsibility to ensure that other families who walk our path don’t do it unsupported and alone like we did. It is not ok to allow this to happen. If I had been critically injured someone would rush me to A&E. My mental health and that of my family is equally critical. That is why I am completely passionate about providing psychological support for families like ours.
Listen to Tom’s mum, and one of our co-founders, talk about Tom’s diagnosis
You can read more from Debs on founding Tom’s Trust here.