Slater was diagnosed in April 2016 at 17 months of age with stage 2/3 Brain Cancer. His tumour is called a Posterior Fossa Ependymoma (Cerebellum & Brain Stem) they account for about 6% of childhood brain tumours and only affect 1 child in 1.4 million.
Since that day mine, Slater’s and my beautiful parents and sisters lives have changed dramatically.
Slater was rushed to Lady Cilento Children’s Hospital in Brisbane where he had emergency surgery to insert a drain to remove the fluid building up in his head. A week later the Neurosurgeon was able to remove 80% of the tumour and Slater was left with serious side effects from the surgery. He was unable to move his eyes, had little control of his arms and legs he could not talk, swallow, sit up or walk and many other problems and complications.
Next Slater had to endure 4 rounds of high dose chemo over 6 months. It ravaged his little body and every high temperature had him rushed to Intensive Care fighting for his life. After a two week break it was into 30 rounds of radiation, every week day for 6 weeks Slater was put under general anaesthetic. By the last 2 weeks the radiation started to burn Slater behind his ears, the heat coming from his head was frightening and by the end the burns were so bad he would wake crying every night from the pain. The final 6 months of treatment was a mix of oral chemo and an experimental drug usually given to adults. The chemo gave Slater horrible stomach and bowel problems and the experimental drug gave him very dry skin and a rash, he was constantly itchy.
Slater was just over 3 years post treatment and surgery, was still recovering from the operation and treatment, then came the horrific news that a new tumour had grown and in September 2019 he endured another massive surgery leaving him unable to walk for 3 months and then followed another 30 rounds of radiation. Luckily they were able to remove the new tumour, however it’s a more aggressive tumour called a Anaplastic Ependymoma with a higher chance of it regrowing.
He is still not eating solids and is feed via a tube and feeding machine and is also delayed in his gross motor skills (balance, walking, jumping) this has improved over time but will be a constant problem for Slater. He has lost the hearing in his left ear completely and is starting to loose it in his right ear as well, his sight has also been effected with him having barely any muscle movement in his right eye.
The remaining 20% of Slaters original tumour is wrapped around his brain stem and is inoperable, but stable at this stage. Unfortunately the chance that Slaters cancer will remain stable are quite slim, with him only being given at best a 10-20% chance of surviving until his 7th Birthday, but this aggressive beast will eventually take my beautiful sons life.
Slater is just the most amazing, happy, funny, loving, cheeky beautiful soul and no child and no family should have to go through this hell. I wake every day with the knowledge that my son won’t make it and so do many other families.
After living through this the last 4 years I find myself struggling with PTSD, anxiety and depression, as does my sister.
I hate to ask for help at this time when everyone is experiencing the isolation we have dealt with the last 4 years but we need a bit of help financially to help with bills and food.
Thank you from the bottom of my heart for reading our story.
All my love Bianca and Slater