Reid's Story
At six months of age, Reid was diagnosed with stage 4 glioblastoma, which is one of the deadliest types of brain cancer. It made absolutely no sense to us. Other than him being slightly more sleepy than usual, which we put down to teething, and a slight head lean, which was a suspected ear infection, never in our wildest dreams would we have ever thought there was a ticking time bomb in our little boy’s head.
So instead of that first-year of learning to sit, walk, talk, and play, Reid was fighting for his life. Within days of his diagnosis, his tiny body couldn’t hold out any longer and he suffered two code blues as well as two strokes.
Reid was taken into emergency surgery just to try and keep him here with us. This day is still etched in my memory like it was yesterday, but also still a blur at the same time. The doctors and nurses at Perth Children’s Hospital rallied together that day just to keep our little baby alive. They were nothing short of incredible and something we will forever be grateful for.
Reid spent nine days in the ICU in a coma and unfortunately wasn’t improving as he still had too much tumour in his head causing pressure which needed to be relieved. The decision was made by his incredible surgeon that they needed to go back in. When he came out of surgery this time, he finally opened his eyes, and it was magical. Through all the wires and bandages I look downed into his little brown eyes, and I could still see my Reid, although a very different version, he was still there.
After the two surgeries, he began chemotherapy, and we pretty much lived in the oncology ward at Perth Children’s Hospital without leaving for approximately a year. Reid faced many neurological problems in this time, one of them being seizures which were becoming part of his everyday life. After 8 months of chemo the decision was made to stop his treatment and for him to go back to the neuro ward. His seizures were now uncontrollable and unbelievably had become more life threatening than the cancer.
During Reid’s two surgeries, his surgeon had managed to remove 98% of the tumour, which luckily for us meant that the eight months of chemo, which was originally supposed to be twelve months, was enough to avoid any cancer being left.
But where his tumour was so big taking up nearly half of his brain meant that when it was removed some of his brain tissue then died and he was left with only half a viable brain which is an incredibly strange concept and is the reason Reid is so disabled.
Having a disabled child is very bitter sweet, everything he does is so precious that we make the most of absolutely everything in life and it makes you appreciate the mundane things so much more, but also one of the hardest challenges especially when you watch other children doing things I could only dream of Reid doing it definitely is emotionally very depleting, I would give my world to hear the words “I love you mummy” something so many people take for granted. But his eyes speak 1000 words to me and when I feel like I’m in a moment of weakness I just look into those eyes and my world and future just seem so much brighter having him here no matter what we face.
To say I am proud of our little boy is an understatement. Reid is the happiest, cheekiest, and most resilient child I have ever known. Although this journey has been so tremendously hard for him, only three days ago our little boy turned four. For us this is purely a miracle after been given a less than 10% survival rate, he really is a medical miracle.
Reid’s life today consists of daily therapy and rehab, lots of anti-seizure medications, feeding tubes, epilepsy devices, partial blindness, and he is wheelchair bound. Although this may seem a lot to most people, we still feel like the luckiest parents in the world getting to watch him grow older. We have seen too many parents on this awful journey unfortunately get robbed of this.
Reid has taught me more about life in the last four years, than I could have ever imagined. He has taught me that you can’t always wait for life to not be hard anymore before you decide to be happy.
Jade (Reid’s Mum)
