“Jackson’s journey began in October of 2009 when he appeared to be having difficulty seeing the blackboard at school and was holding his books very close to his face, in order to read.
He had gone from being a bright and happy little eight year old to not wanting to go to school, not doing his work in class, being disruptive and not like himself at all.
We were very concerned as to what could be causing the change in his behaviour. We took him to an optometrist to have his eyes tested and were told his eyesight problems were behavioural and that 10 weeks of vision therapy would fix the problem. It didn’t!
We also took Jackson to the family doctor, then a psychiatrist who also told us it was behavioural and suggested a set of appointments to work with him, followed by an eye specialist who agreed it was a behavioural issue. Finally, we received a call from the school to say they were concerned at Jackson’s uncharacteristic, confused behaviour and so we took him to Starship Hospital.
After examining Jackson, a CT scan was done and this revealed the cause of the ‘behavioural issues’. The CT scan showed a tumour the size of a tennis ball attached to Jackson’s left optic nerve and he had developed hydrocephalus causing fluid build up in the brain, pressing on his optic nerve and squashing it, resulting permanent damage to his eyesight. Surgeons, later told me that if we had left it another week to come to Starship, Jackson would have died.
We were told Jackson’s tumour was a pilocytic astrocytoma brain tumour which is the ‘best kind of tumour, in the worst place’. Meaning, while it is diagnosed as benign, it’s position means it is not possible for it to be entirely removed.
Jackson bravely underwent two 8-hour brain surgeries to have the size of the tumour reduced as much as possible, the 2nd surgery involved taking off half his skull and stapling it back on afterwards. He then underwent two years of intensive chemotherapy. During this time, Jackson attended school when he could, which wasn’t often – he was a very sick boy.
He made us laugh though – he was determined he didn’t want to have a feeding tube (anyone that knows Jackson, knows how much he loves his food) so the morning before his Wednesday regular chemo appointment he would cook himself a 3 egg omelette with lots of yummy things in it, like ham and veges, then he would pack himself some snacks to have while he was having chemo that day. He would be very sick for the next three-five days where he would hardly eat anything, and then Monday/Tuesday would come around again and he would then progress to eat the biggest meals possible so as not to lose any weight. It worked … he never had to have a feeding tube!
Jackson is now four years on from treatment and is a world away from where he was then.
He still has his tumour – he has regular MRI scans to ensure the tumour doesn’t grow again, this will be for the rest of his life. He still has his permanent loss of eyesight – it’s annoying to know that if he had been diagnosed correctly in the first instance, he wouldn’t have the damage to eyesight as the pressure wouldn’t have squashed his optic nerve.
As a mum now, I kick myself that I wasn’t pushy enough to ask the questions, to question the diagnosis each time – I knew in my heart it wasn’t right … but as a young mum, you think you’re doing the right thing following the specialist’s advice – it’s a heavy burden to carry.
And yet through it all – Jackson still has the same determination and lust for life that he has always had. It’s his attitude that got us through those gruelling chemo sessions, the endless nights of sitting up with him in hospital through the hallucinations after surgery, the amazing quiet times when we just lay in his hospital bed reading books, talking, playing cards and always being thankful that he was still with us. He reminded me constantly, that we just had to remember that there was always someone more worse off than him – and then we would usually cry a little, hug a little and then find something to laugh a little about too.
We have met some incredible families and had some wonderful experiences and opportunities along the way through this journey, people we wouldn’t have met had we not been thrust into the world of cancer, something I was previously blissfully unaware of. Yes it’s been hell, and I wouldn’t wish it on anyone… but it’s made us a stronger family as a whole and it’s given Jackson the maturity and confidence to know that he can pretty much do whatever he sets his mind to.
Jackson is heading into Year 11 at school this year. He takes piano, singing, tap, jazz & Musical Theatre lessons and is auditioning for his local theatre’s youth production “Little Shop of Horrors” in the New Year.”
– Written by Rosie, Jackson’s mum