Our youngest child Josh was born in January 2013. He was an absolute dream of a baby, a happy and content little man who literally ate, played and slept.

In June that year though, things started to change. At first he just stopped finishing his bottles but then, by the Monday of the Queen’s Birthday long weekend, he started refusing them altogether. Worried about dehydration, we decided I’d take him up to the hospital while Dean stayed home with our other kids.

That was just after 9am on the 10^th of June. By 9pm I found myself sitting at a second hospital, around a table with my sister, a social worker, a paediatrician and a neurosurgeon. This surgeon was suddenly telling me that my son, my four month old baby boy had a massive tumour in his brain that was about to kill him.

We’d literally caught it with just hours to spare.

With no paediatric neurosurgeons in Canberra, a neo-natal intensive care unit was already on its way down from Sydney so, after an emergency drain was placed by surgeons here and we got through the 3 hours it took to stabilise him to be moved, Josh and I headed off with the NETS team. We arrived at Sydney Children’s Hospital in Randwick just before 7.15am, less than 24 hours after first presenting to emergency.

Over the next nine months, Josh went through more than any person should in their entire lifetime. There were multiple hospital admissions, both here and in Sydney, 7 separate surgeries, the placement of a PICC line for medication, countless CT scans and MRIs… there was even a lumbar puncture at one stage. He developed epilepsy, was diagnosed with cerebral palsy and more recently, level 3 autism spectrum disorder. All diagnoses that can be traced back to one thing that is noted in each of his MRI reports, a “surgical defect to the corpus callosum”.

What this means long term, 5 ½ years on we still don’t know.

Josh is non-verbal but the root cause is unknown. After his initial tumour resection, he’d lost absolutely everything, right down to his sucking reflex so for now, all we can do is keep giving him options for communication and take his lead as to what works for him. He doesn’t have any difficulty with eating, but we still don’t know exactly how much sensation he has on the inside of his mouth, something that’s crucial for verbal communication.

We were also told he would never walk unaided but again, we kept giving him options for mobility till he found one that worked for him. Three months of using a Gator (walker) he decided he didn’t need it anymore and just like that, he was walking. A few months ago, we started attending the Sensory Session at our local FlipOut Trampoline Centre and that has had a huge impact as well. His balance and steadiness have both increased to the point he can now jump with both feet coming off the mat.

His seizures still fluctuate in frequency and severity, but EEGs have never located their source. Without knowing their location, we can only guess if they’re also being caused by the defect. What we do know is that they are continuing to change, and he will likely be on anti-epileptic medication for the rest of his life. Josh is a rarity. Most of the kids we’ve met since his initial diagnosis are no longer with us which, along with the “survivor guilt” we all feel, means it’s been hard to find emotional support and people that can relate. Yes, he had brain cancer but he’s still here. Yes, he has cerebral palsy but he’s more able bodied than many. It’s not just one diagnosis we’re dealing with which complicates things so much.

 

In 2017 Josh attended preschool at a mainstream government school. The staff were amazing and continually did all they could to support Josh. By term 3 we knew he just wasn’t ready for Kindergarten (first year of full-time school in the ACT) but were denied a second year of preschool. We looked at changing schools, but it still would have meant him starting kinder. For months his educators and therapists had been trying to get me to take a look at our local Specialist School. I couldn’t do it. I couldn’t accept that, after fighting so hard just to survive, Josh was faced with such an uncertain future and one that involved a special school.

Term 4 rolled around, and I realised I wasn’t really being left with much of a choice, so I begrudgingly booked a walk through at the school. I, WE, fell in love. Not just with the place but the people. I’d been fighting for so long to keep things “normal” for Josh, I’d forgotten to fight for what he NEEDED!

There were a lot of tears, fear and frustration when 2018 arrived and it was time for school to go back. Josh had two part-time teachers AND he was catching the Special Needs Transport so I could get his brother and sister to their school on time. He excelled. There’s literally no other way to put it. From day one, he climbed on that bus and never looked back.

-February this year sees him start Year 1 and I’m so excited for him. The nerves are still there with the change in classroom, teachers and aides but, after all he achieved last year, I know he’s got this. https://www.facebook.com/HopeforJoshOurLittleBrainTumourSuperhero/

Kylie Catterick