At the age of six my son Thomas was thriving – energetic, bright and cheeky. He loved the water, to run and to play with his twin brother Cameron. In December 2017, after months of unexplained lethargy Thomas was diagnosed with Medulloblastoma – a paediatric brain tumour. During one of his surgeries to remove the mass, Thomas acquired a brain injury known as Posterior Fossa Syndrome. He was left without any motor control including his ability to speak, eat, use his hands, sit, stand or walk.
Thomas spent almost a year in treatment undergoing radiation, chemotherapy and working to physically rehabilitate. He was determined, patient, sweet-natured and ever cheeky through it all. His tumour returned soon after his final chemo round was finished, and the relapse proved terminal. Thomas passed away on 9 January 2019 – just eleven days before his eighth birthday.
I had a couple of months dealing with anticipatory grief, losing Tom was like nothing I had ever experienced. My grief and my pain were overwhelming and constant. I grew more and more anxious and I realised that I was particularly worried that I might forget something, any little thing of Tom and I was encompassed by that fear. I started to write it all down – a way to keep his memory safe and to begin to heal. In the end I wrote a book to capture the battle my beautiful boy fought and the journey we faced together. Tears came with every word I wrote but, in the process, writing had become a release for me and a way to calm the chaos in my head and ease the pain in my chest. The book was a part of Tom’s legacy and perhaps would be a resource for other families thrust into the hellish world of childhood cancer. Once the book was published, I found I needed to keep writing – a blog, a journal, letters, stories. Trying to find meaning, perspective and solace, but mostly to keep Tom with me.
We keep Thomas in our lives in lots of ways. For myself, my family, but particularly for Cameron, Tom’s brother. We celebrate with a special dinner on the nineth of every month. We listen to his favourite music, talk about our memories and notice the little signs we think Tom may have sent us. I talk to him every day as I grab at my ‘Tom pendant’ around my neck. We fundraise and advocate for paediatric cancer research in his name. All the energy and love I still have as Tom’s mum will be spent ensuring his legacy lives on. Tom is forever seven, forever in our lives and forever my cheeky superhero.
Thomas Beattie
20.1.2011 – 9.1.2019
