Rest at last
Yesterday afternoon, our beautiful Elliot passed away peacefully with all of us by his side.
At around 3pm, I went to pick up his little brother Reed from childcare. Willierose and I had been taking turns reading Roald Dahl’s Matilda to him for most of the day. It seemed a good way to pass a difficult day, as he had a really hard time breathing and didn’t really open his eyes after about 9am.
As soon as I returned with Reed and came into the bedroom, Elliot stopped breathing. Willierose, her mum, Reed and I were on the bed with him to say goodbye. He’d waited for us to return…
The last few weeks with Elliot
After a stable December, during which he was undergoing weekly kinesiology sessions and wore the Voyager device 24/7, things began to change around mid-January. Up until that point, he’d rarely complained of headaches.
‘Do you have an ouchie?’ was always one of the first things we asked when we sensed that he wanted to tell us something, and if he did, it was usually related to his posture. He’d spent most days in January on the couch, watching cooking shows or movies, or painting dozens of rainbows, flowers, love hearts and fireworks. The more colour and glitter the better! However, towards the end of the month, the headaches started to become quite frequent. We started with very low doses of pain medication, but as the weeks went on, we kept having to increase his dosage to keep the pain at bay.
Moving also became more difficult and uncomfortable during that time. He wanted to just stay in our bed, though he surprised us a couple of weeks ago when he wanted to go to the park. It had literally been months since we’d gone out for a walk together, so it was lovely to be out and about as a family again, even if it was just for a short time.
Little moments of joy
As the pain increased, it started to affect his mood and it became increasingly difficult to cheer him up. Parental water gun fights never failed to get some hearty giggles out of him, but even this started to change in February. A continued source of joy, still, were Snapchat’s funny filters, which we tried out almost every day, much to his delight:
Elliot was an incredible little boy. His kindness and humour brightened our lives every single day of the last 5 years and 9 months. He was the best big brother Reed could have asked for. His strength and resilience kept surprising his doctors, who at one point remarked that he clearly hadn’t read the DIPG textbook: he outlived his 12–18-month prognosis by another three months. There is a giant Elliot-shaped hole in our lives, and we miss him so much already.
Thank you for following Elliot’s story, for sharing it, raising and donating money for a cure, supporting us, and being there for us.
He will live on in our hearts.
