Thomas B - Our Cheeky Superhero
Thomas’ story as told by his mum, Trish
Thomas was always a bundle of energy, so quick to crawl, to climb to run and swim. He had beautiful eyes that would change colour with the weather but mostly his eyes were grey. He had long skinny feet and a glorious giggle. Tom loved the water, wrestling with his brother and animals in any form. In 2011 I gave birth to twin boys Cameron and Thomas. In December of 2017 just shy of their seventh birthday, Thomas was diagnosed with a malignant form of paediatric brain cancer called medulloblastoma. We found a 5cm mass or tumour in the centre of his brain between his cerebellum and his brain stem. Three phases of treatment – surgery, radiation and chemotherapy. Each took their toll and Thomas spent far more time in hospital than most cancer kids. We lived in the Queensland Children’s Hospital (Brisbane, Australia) for about 8-9 months.
Tom underwent general anaesthetic every day so he could receive his radiotherapy. This took so much energy out of him and for weeks he would suffer consistent nausea and vomiting. With every round of chemotherapy his neutrophils and blood counts would struggle to return which meant he suffered constant infections. With no reserves to fight off the smallest germs that made their way to him regardless of all efforts to keep him safe he was often confined to the wards. Transfusions, ultrasounds, audiology testing, lumbar punctures, long term access lines into his chest. We named the central line tubes hanging from his chest – Optimus Prime and Bumblebee – they were his protectors from extra needles into the skin. CT scans, MRIs, blood tests, 4-hourly observations, a medication regime that was so prolific you couldn’t count them on all of your finger and toes. Too many visits to PICU. Doses of dexamethasone which puffed him up and, for a time took his sweet nature. I don’t know how we found strength but we did. I got it from him and he got it from me. It was easy to fall apart when he would sleep but it was easy to be positive when he was awake.
As difficult as the side-effects of the medical treatment was to bear, another challenge came as a result of Tom’s resection surgery. The cerebellum is a part of the brain that plays a vital role in virtually all physical movement. When the surgeons cut through his cerebellum to access and remove the brain tumour sitting alongside his brain stem, he lost every pathway to almost every muscle. The resulting brain injury is called Posterior Fossa Syndrome and Thomas had one of the most severe presentations of this that his doctors had seen first-hand. His ability to see, to speak, to swallow, to balance, to sit, to control movement, to stand or walk - gone. All he could do was breathe on his own and thrash and scream. Slowly, although frustrated he couldn’t communicate, he started to calm – after weeks. Tom’s functions started to return after months of rehabilitation and monotonous practice. He worked so hard.
Over his 13-month battle, Tom demonstrated patience, courage, humour and strength. He has taught me all of these things and more.
The tumour relapsed just eleven months after his first diagnosis even though the scans had been clear since his initial surgery in the previous December. It had returned and grown aggressively to the same size and position in his brain. Accompanied by numerous smaller tumours throughout his brain and spine, Tom’s prognosis was changed to terminal. Two months of memory making followed as we prepared for the inevitable.
Just eleven days before his 8th birthday, Thomas passed away in my arms in the early hours of January 9th, 2019 at Hummingbird House from relapse medulloblastoma and I miss him every day.
The Facebook Live video about Thomas’ story as posted as part of Superhero September, 2021 can be found below: