Doctors found a mass and some swelling on Levi’s brain on December 20, 2017, one month and five days after his 7th birthday. We refer to this as diagnosis day. We didn’t get his official DIPG diagnosis until a few weeks later, but there was no going back from this point.

Levi’s cancer journey began when his eyes crossed. It happened a handful of times over as many weeks. Infrequent enough not to fret, but unusual enough for us to notice. We would catch an occasional glimpse of his eyes doing a strange dance at the dinner table, but it went largely undetected in the mad rush of family life. I remember wondering out loud if Levi was doing it on purpose. Just like learning to whistle, or click your fingers, going cross-eyed was an occasional novelty in our house. It didn’t seem to worry Levi too much, so we weren’t overly concerned. At this stage, Levi displayed no other symptoms.

The alarm bells rang when Levi arrived home one afternoon just before school finished for the year to tell us that his teacher needed to talk to us about his eyes. If someone else had noticed, it was a thing. I took Levi to an Optometrist because I thought we were dealing with a vision problem. We were relieved to know he had 20/20 vision, but also a little concerned. What else could it be? The optometrist must have had the same thought, because she got Levi an appointment with an ophthalmologist two days later.

The eye specialist told us Levi had sixth nerve palsy. His left eye wasn’t moving past midline and when he looked to the left he experienced diplopia, or double vision. We were blissfully unaware that a brain tumour was hitting his sixth cranial nerve and causing him to see two of everything. The ophthalmologist told us to get Levi an MRI. He saw something vaguely unusual, but he made it sound like he was just covering all his bases. “I am sure it will be fine,” he said.

Fortuitously, a late cancellation meant an MRI appointment opened up the next day. I was nonchalant enough to send Levi with his grandad. It was my last day at work for the year, and as a teacher, I would be having the next six weeks off. The radiographer told my father-in-law the doctors would call if they found anything.

The next day, December 20, 2017, with our three kids enjoying a morning swim at the pool with their grandparents, and Ben at work, I set off to do some last-minute Christmas shopping. At 11am, I got the call. I still remember the book shop I was in, and the present I had to leave at the counter. “There is a mass on Levi’s brain and some swelling,” the Ophthalmologist said. “Go straight to the Emergency Department at Sydney Children’s Hospital. They are expecting you.” It was at that moment that our world would never be the same again.

The next few days and weeks – Christmas and New Year 2017 - were a rapid and shocking introduction to the world of serious childhood illness. In a hallway of the emergency department within minutes of arrival, we were told by a Neurosurgery Registrar that the mass “wasn’t in a very good spot and it wouldn’t be safe to operate”. I will never forget the social worker who swooped in shortly after to mop up for that doctors’ mess of hard words spoken in unfortunate places.

Meanwhile, Levi was poked and prodded by teams of doctors and department heads from many specialities – neurology, neurosurgery, oncology – who gathered around his bed to confer, while Ben and I were ushered into private rooms to talk about the unspeakable. The influx of attention was both a blessing and a curse. It’s nice to be a priority, but there’s a frightening reason for the fuss. I would take a long, maddening wait in emergency for a minor ailment any day of the week.

Still naive to what a mass in the brain meant and following doctors’ orders not to fall down a google black hole, we decided to biopsy on December 27th, the day of my 41st birthday. The neurosurgeon felt confident he could get to a tiny piece of the mass that was jutting out to the left of Levi’s brainstem without causing too much damage. I can still recall the timidity with which that doctor spoke. I don’t know if he reserved this tentativeness for all parents of patients or just the ones he knew were staring down a battle they had no chance of winning. We didn’t appreciate how risky the surgery was, or that this surgery would be the key to enrolling Levi in two clinical trials.

It wasn’t until we were ushered into an oncologist’s office two weeks later, an agonising, anguished wait – is it life, or is it death – that the crushing DIPG blow came. We were transferred out of the Neurology ward into the Oncology ward, our new home away from home for the next year.

So began Levi’s last year of living. Over 372 heartbreaking and beautiful days, he endured one craniotomy (brain surgery) and biopsy, 30 rounds of radiation (complete with head in a mask and bolted to a table), an operation to insert a porta catheter, 14 cycles, or 6 months, of an immunotherapy trial, two months of another experimental trial, 11 MRI’s (almost one a month), 2 CAT scans, never-ending needles and blood samples, relentless neurological exams and many, many trips to the hospital.

When progression – that merciless, inevitable march towards death - hit, things ramped up a notch, the cogs of torment turned even tighter. He took eight different types of medication several times a day – drugs for pain, constipation, nausea, swelling in the brain, lining the stomach, trying to kill the cancer. They could do nothing to halt the ballooning of Levi’s face and body, the slurred speech, the paralysis of facial muscles, the headaches that ripped through his skull like a freight train, or the steroid-induced personality change.

As palliative care crept up on us like a sneaky, hellish parasite, the final indignities of this ferocious disease were paraded in front of us like a horror film we were forced to watch. Levi lost a vital part of himself in rapid succession, each loss stripping away his body’s ability to function. The tumour stole his steps. Made his words disappear. It strangled his swallowing and starved him of his breath, until his life was extinguished before our very eyes. Mercilessly, the cancer left Levi conscious and cognisant of thought to the very end, so he was acutely aware of the savagery that was happening, a defenceless witness to his own suffering.