Over the years, I've observed that often cancer "battles" are portrayed by the media to be just about chemotherapy infusions whilst in bed, hair loss, with some nausea and pain... a falsely palatable perception of its reality. Especially so in context of a leukaemia relapse (high-risk with much more intensive treatment). Especially so when it's a child. What a world ours is now… so far-removed from what we were living. You see with cancer, there are at least 3 arms of management - there's a routine chemotherapy schedule (always changing - spinal & IV infusions, and oral meds, procedures, surgery, etc), there's the treatment of all the side effects, and there's the unscheduled, heavy-hitting treatment for random infections causing quick deteriorations in patients who have no immune system. This means that most weeks, often on a daily basis, we deal with hours of Ned’s nausea, inconsolable crying, pain from his Hickman line (with recent complications), diarrhoea, screaming tantrums (thanks to the steroids currently), oral medication administration (some forced), frequent night wakings, physical weaknesses and incapabilities, irritability, fatigue, muscle aches, sore eyes, ulcers, slow heart rate and arrhythmia scares, food demands coupled with immediate refusal… the list goes on. When we’re in hospital, Ned can’t be left alone, so a parent (or other trusted adult) has to be with him in his room 24/7 – “sleeping” overnight in his hospital room (with all the frequent wakings, assisting with certain meds, beeps, obs checks, toilet visits, etc) with no morning respite. The 24-hour endless cycle of caring for a very sick child on chemotherapy is an all-consuming, emotionally-draining, relentless, exhausting (not just like when I was exhausted with a newborn), miserable job – amplified by the need to process and deal with our own emotions, amidst frequent physical separation, parent our daughters (with various sleeping or adjustment challenges), create new routines, learn new medication schedules, and try to physically negotiate my rather expanded girth. It’s a road we would never wish on anyone. The homesickness has now engulfed us, and we all dearly miss our friends, church, our home, and colleagues back in Tasmania – many of whom have closely travelled with us over the last 8.5 years since we moved there. Nothing can describe the dark cloud that settles over me when I open my eyes yet again with a jolt, be it night or early morning, to another scream of an unsettled child; the reality of this awful battle Ned’s enduring cannot be dreamed or slept away. Another day begins.

Ned's fortunately had some recent (unexpected) nights out of hospital, which has meant we've been able to have a few family walks, outings, meals together and much-anticipated tram rides. Especially enjoyable since we've been joined by my parents, recently returned from their work in Africa, several weeks earlier than originally planned. The fresh air, occasional smiles and extra hands have been a bonus break from the reality; Ned's daily question of "can I sleep at the flat tonight or will I be staying here in hospital?" reminding us of how precious this time was. But our seemingly happy smiles in person or in photos do hide the ever-present, cautious apprehension we carry and the tears we often shed behind closed doors. It pains me to feel like I have to continually justify Ned’s irritable, seemingly-rude, miserable behaviour due to his steroids or other nausea / pain, etc. If an oncology parent tells you about “steroid weeks / courses”, please give your utmost sympathy. It is hell. It can dissolve families, mental health, and any last shred of a parent’s patience or ability to think reasonably. Please don’t judge it as “poor parenting”. It can turn the sweetest and most charming of Neds to a miserable, angry mess who can’t interact with anyone without screaming. It’s broken Seth and me many times.

Please please please don’t try to suggest we're doing the wrong thing by having Ned’s cancer treated with chemotherapy, by oncology specialists, in a top hospital. My nearly 16 years of medical studies and practice have absolutely confirmed that yes, the oncologists have our best interests at heart; yes, chemotherapy (and other treatment) does work and there are thousands of studies to prove it; and yes, we’re not going to deny our precious son this lifeline… I’m sure, if you were in our situation, despite hating the damage chemotherapy can cause, you’d also cling to this lifeline offered and proven by some of the best scientists in the world.

"At least you’re in Melbourne, where you’ve lived before and thus know people.”

“At least you’re at one of the best children’s hospitals with amazing specialists.”

“At least you have the joy of an imminent new baby ahead.”

“At least you’re medical and have more insight into the day-to-day, etc.”

“At least you’re already used to sleep deprivation / being an oncology parent.”

Whilst this is ALL true and yes, we are thankful for these, any time we hear them, we feel a tiny little chip away at our souls, somewhat feeling like any of our feelings of displacement, turmoil, grief and sadness is misplaced and unfounded. Somehow feeling like we should in fact learn to be content immediately in this suffering – with just one flippant phrase. As if all of this stress is undue and unjustified. At this time in our lives, despite all the good things (that we acknowledge), it does hurt just a bit. We both cling to hope that our Saviour is travelling along beside us, suffering as Ned and we suffer, but we are under no illusions that God will certainly heal Ned. Now more than ever, with a very unknown future, we know that we need to walk in complete faith – trusting only that He will be there, that He will comfort and uphold us regardless of what each new day brings. Being Christians doesn’t exclude us from suffering; instead we must sometimes painfully sacrifice our earthly plans and aspirations while God re-directs our lives in opposite directions. All I wanted to be was a procedural / obstetric GP in a resource-poor community with Seth and our 4 (healthy) children. Now, it’s perhaps becoming more apparent that my years of medical training are more relevant to being my child’s advocate through this epic battle. And with this in mind, I'm praying that the resilience and patience we've also learned has prepared us for welcoming our 4th child into our rather chaotic lives in the coming weeks.

Edward Isham