As the first colour of dawn barely scrapes the sky, I scoop Ned out of bed. "Wake up now?" he asks; "going on an adventure? To hospital?". He reminds me to grab teddies - this morning it's his 'Ned' doll and a duck he's named 'Daddy' cos of the hat he wears. Then we're off into the still dark morning and on to the hospital for a routine, scheduled GA (general anaesthetic) and three chemo infusions... and thus begins Ned's birthday.
Ned points out various trucks and vehicles of interest as I whiz him along in the pram towards the hospital; we talk about which nurses we might see today, and, upon our arrival, I give him his first present for the day (kids' Star Wars books!) to offset the trauma and pain of port-needling (for IV access).
Running through the checks before theatre, Ned tells me he doesn't "feel happy well" and only wants cuddles, but a video message from an uncle and aunty brings a small smile.
My usual joke as we enter the theatre "here's the cast for today's show..." is lost on Ned as his anxiety heightens and cuddles are sought after. I've lost count of how many GAs he's had, but I still find sadness in this part of the process. There's something about the sterile environment with bright lights, complex apparatuses and uniformed, scrubbed nurses and doctors that makes this a stark reminder of the fragility of this cancer journey.
After his post-GA cuddles and transfer back to the ward, the clown doctors visit, sing "Happy Birthday", and give him a clown nose and a paper bag dragon. One of them cheekily writes a big birthday message on the door in black texta... "The cleaners love me", she jokes.
After a long day of entertaining and cuddling a miserable, tired, restless boy (and his new dump truck) through all his chemo infusions, finally we were discharged and exhausted Ned promptly falls asleep on the car trip home.
One thing that has struck me (and others) time and time again over the last 10 months is Ned's naturally cheerful and resilient character. He's perpetually exhausted, nauseated, itchy and in some kind of discomfort, but yet his sense of humour and mischievous personality pervade harsh reality most of the time, when there are people around.
This, then, means that a little part of me breaks every time I see his raw misery, discomfort and sadness... like when his choking sobs and wild, weeping eyes beseech me to stop holding him down for yet another uncomfortable procedure; like when his distressed screams wake us frequently in the middle of the night; like when he goes from playing contentedly to screaming hysterically within a second; like when he refuses to eat anything at mealtime because of the nausea; and like when he arrived home from hospital on his birthday afternoon... initially happy to see me, but clearly feeling pretty average. Presents were ignored in favour of cuddling quietly on the couch and reading books. For once, the nightly dinnertime battles were avoided as birthday prestige required the favourite (but rarely eaten) hot chips for dinner - of which some were actually consumed readily! Luckily, in preparing for his birthday and taking into account how revolting he'd be feeling on the day, we had a very last-minute, small gathering over the preceding weekend, where he finally got his much-anticipated 'construction site cake' - with some friends, both sets of beloved grandparents, and some Melbourne-based aunts and uncles. His refusal to eat any will, in his mind, surely be trumped by the memory of blowing out three candles and the diggers on top!
In some ways, the emotional experience of a child's cancer journey can be worse for the parents, I think. There is no doubt that Ned is suffering the most physically, but his upbeat resilience and his young age mean that traumatic memories are mostly erased with cuddles and love... Yet it's that overwhelming love he gets from us that is our undoing - it means the horrid experiences linger on as horrid memories, and translate into plaguing guilt for what our dear child has to endure, yet we are spared. And for me, it means that even now 10 months into this leukaemia ordeal, I still shed a quiet tear during every one of his anaesthetics, and most nights before I fall asleep.
Our three children are all spectacular blessings for whom we are incredibly grateful to God, however our darling Edward has most definitely been the most character-shaping gift, through no fault of his own... from his colic and awful sleeplessness as a baby, to his current illness. Yet Seth, Lucy, Eleanor and I adore him, and our lives are far richer for having our playful, teasing, cuddly, outdoorsy, adventurous, Duplo-loving, chatty, witty Ned around.