Joy and Trepidation

Gilbert Peter

”bright pledge and rock” 

3.54kg; 4.09pm, 23rd August 2017

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What a joy it’s been welcoming a new little one to this world of ours... but also how heartbreakingly difficult for me particularly. Into a world of tension, chaos, anxious siblings, white walls, sadness, resentment, anger, and exhaustion came baby Gilbert on that Wednesday - into the skilled hands of 2 midwives (one of whom is a treasured friend who flew up from Hobart), while my parents and my other dear friend, Jess, helped with the day's coordination. There was excitement and relief at his safe arrival, but as the overjoyed sisters and brother cuddled him enthusiastically, the happy tears had a bitter after-taste. I’ve never before experienced such contrasting extreme emotions concurrently: 2 children of ours - one tiny, pink, screaming bundle in the arms of one fatigued, luminously-pale, hairless, sunken-eyed brother. To this day, try as I might, my heart is perplexed by this juxtaposition of thrilling new life against a constant background of sadness... and my smile often masks uncertainties about how to act or what to say. I think the fact that we feel like we’re simply treading water and “surviving” on an adrenaline rush has prevented us from deeper considerations. 

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Since Gilbert’s birth however, despite being quite the discontented, unsettled child, we have had moments of pleasantness and delight - sibling cuddles and pride from showing "their baby" off, the peace afforded by a warm bath, the bright newborn eyes, wise beyond his years, cynically drinking in all the shadows and bright colours around us... Although this is my fourth precious baby, I'm still in awe of this miracle of life and the evidence of our Creator's hand in its formation. 

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To be perfectly honest, it’s been a really tough few months. For the first 7 weeks of Gilbert’s life, Ned (and thus Seth) have been in hospital, which no-one liked. Ned was SO sad he couldn’t be at home to welcome his brother and hold him every morning, Seth was sad he didn’t get those evening newborn cuddles, and I was sad (and frustrated) that I didn’t have Seth to help me with any newborn nights or sick girls, that my family was so fractured at what should’ve been a joyous time. I have also felt such guilt because Gilbert has spent a great deal of time screaming by virtue of me parenting solo and being physically incapable of tending to his (frequent) distress instantly (I’ve since found out that his diagnosed laryngomalacia and reflux are to blame for his feeding issues, difficulty sleeping and slower weight gain than my previous babies).

On this background of fatigue and emotional exhaustion are moments where the reality of childhood cancer has struck with such force. When you’re on an oncology ward constantly, you bond with other families all fighting the same battle... to win. The unspoken elephant in the room is what the grim reality of a lost battle means, and heartbreaking news from several friends has blindsided us and forced us to process our raw grief at so many other children’s suffering, particularly these friends. It’s a different world this, an “alternate universe”... one where you can’t ever feel secure about any of your kids’ health; one where bad news is often expected; one where your kids learn to pray for people “not to die”; one where making serious decisions for your child’s future, whilst juggling multiple children, emotional fatigue and sleep deprivation is considered the daily norm; one where long complex medication names are the standard language used; one where the anxiety of any situation’s risks and children’s safety overrides anything else; and one where, rather than discussing how to optimise your child’s life, health and long-term happiness, discussions simply revolve around your child’s expected morbidities and long-term survival rate; and one where your constant mental state is tense and on "high alert". 

Despite the trials though, these last few months have also finally brought us some unexpected better times. Ned was started on a clinical trial where he happened to be randomised to the trial immunotherapy drug (as opposed to the standard chemo regime that was the other trial arm). It consisted of a 28-day continuous infusion from an infusion pump in a back pack he carried constantly. We were so relieved that Ned was randomised to the immunotherapy arm (an answer to prayer) because, although long-term studies are lacking (hence the trial), it’s meant that, once he was stabilised, he could be discharged from hospital for a few weeks, carrying the infusion pump in his backpack. The alternative was weeks of more heavy chemo hooked to the IV pole in hospital till transplant. Despite most days spent in hospital still (tests, procedures, checkups, reviews, etc), it has been so lovely having him ‘home’ again. He’s really enjoyed the freedom of no IV pole, being able to play Lego with the girls again, walking with us to & from Lucy’s school, eating meals together, etc. Furthermore, given we haven't yet reached transplant time, but the clinical trial has now ended, he was approved for further compassionate access to the drug because he has responded so well to the 28-day infusion (so he can stay out of hospital rather than going back on nasty chemo before transplant). For this we are so thankful. 

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The transplant process has been set to start on the 19th November. This is the date Ned is likely to get the bed; then will start 7-10 days of 'conditioning' to prepare his body for receiving Eleanor's bone marrow - which is going to take quite a toll on his little body. The big Transplant itself is probably going to take place on the 27th November: Eleanor will go into theatre in the morning to have bone marrow aspirated, and then she'll be admitted to a ward for only a couple of nights of analgesia and other post-op management. The bone marrow will be processed in the lab for a few hours, then anti-climactically, the small bag (which looks like a blood transfusion) will be infused into Ned. From there we start the harrowing recovery day count; Transplant Day being Day 0. The first 3-4 weeks will have the highest risks of complications. 

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Thank you for getting this far - we are humbled by the interest of those following along and praying for us or simply pausing to think of us and convey that acknowledgement in some way. This was a tough blog post to write, which is why I kept putting it off, but right now, in this moment, though we are still upset about a lot of things, we are grateful Ned's our son, and we feel privileged to hold his hand and walk with him in his vulnerabilities, tears and fear, trusting God is guiding us - especially through the bleaker months ahead. 

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Credit to our dear friend, Lisa Kuilenburg, for most of the photos (the best ones!) in this post. 

Behind Closed Doors...

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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.

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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.

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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. 

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Ned's Perfect Match

Life hasn’t got much easier since my last blog post. Unfortunately Ned has had continued complications and/or infections, so hasn’t been able to leave hospital at all. And given his seeming susceptibility to any passing infection, and propensity to have slow recoveries and poor cell counts (needing frequent transfusions and constant quarantine), we’ve been told that it’s likely he won’t be discharged from the ward at all till well after his scheduled bone marrow transplant in (probably) October. This was a rather grim revelation for us since it further prolongs our family’s state of fracture… with Seth and me alternating between either overnight-ing with the girls at “home” and staying in hospital with Ned. Often, we attempt to all eat dinner together in the hospital room, but the oft-ensuing chaos is not really conducive to doing this every evening, especially given how little tolerance an easily-fatigued and irritable Ned has for either sister. Ned feels awful, has constant pain, nausea, weakness, itchy eyes, skin breaking down, ulcers, is missing his energy levels, his outdoor fun, his kindergarten playmates, and dislikes his “legs that don’t work”. Although initially being quite sad about his rapid hair loss, he’s a bit happier now it’s gone and he’s not so constantly itchy. 

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It does also mean that Seth and I are constantly busy or occupied – either with usual household / parenting duties (especially the emotional adjustment that has proven quite challenging for some of our kids), or caring for Ned, with his significant physical incapability. Accordingly, though familiar faces are encouraging, and we’ve felt so loved in having close friends fly from Tasmania or drive in to help with the juggle, it’s a bit tricky for us to take more than 1-2 hours out of hospital or away from family at any one time.

We’re relieved that Lucy’s started in grade 3 at a small, local school, just across the road from RCH, where she’s already made a few friends, enjoying classroom interaction and activities, and getting along well with her teacher. We’re also feeling blessed to have found and settled in a local church, where we can rely on lovely social interactions weekly and seek additional support.

 The other wonderful news since my last update, however, is that Ned has a bone marrow donor. The slightly bittersweet side of it for Seth and me is that his perfect match is his 2yo sister, Eleanor. Being in a state of emotional fragility already, this is challenging for us both because it means we have to involve another of our precious children in medical procedures due to leukaemia – the enormous monster we’re battling, which seems to be spreading its fingers further and deeper into our lives. We still find carrying in vulnerable-looking Ned to be put to sleep in theatre every single time takes an emotional toll, and now we’ll be handing over our even smaller child. But we’re equally thrilled that he has a “gold-standard” sibling-matched donor.

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Eleanor will have bone marrow aspirated from her hip while anaesthetised, then will spend a couple of nights in hospital for analgesia and possible iron replacement. As soon as her bone marrow is removed, it will be sent for a few hours of processing and treatment, then will be brought up later that same day for reinfusion into Ned, followed by another 6-8 weeks in complete isolation. This process will probably all be beginning in October, when we have a newborn as well, so it’s a rather daunting few months ahead… Much easier to instead focus on each day at a time and be thankful for the occasional fun family moments in the hospital room, the rare nights of better sleep, and the hearty chuckles we can still sometimes elicit from Ned. We lose track of the weekdays when we’re in hospital all the time, so time is better marked by the schedule of procedures or chemo agents being administered, and instead of the usual workers’ end-of-the-week exuberance, our weekday moods fluctuate according to the anticipation of a less rigorous day or the dread of more procedures or imminent test results.  Right now, though, we're enjoying a slightly more peaceful few days in hospital, before another gruelling month (with steroids) begins, while Ned's body recovers from the first 4 weeks of intense chemo...  

Thank you to all of you, though, who continue to keep in touch, support us, lift us up in prayer, and read our updates - this is probably our simplest portal to update you frequently if you're interested. 

The Big 'R' of the Big 'C'

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It’s been the baneful niggle of our 3-year relationship with Ned’s leukaemia… the dreaded Relapse. And when you have a first year including the shocking initial diagnosis, upgrade to high-risk, multiple complications, many infections / blood transfusions, etc etc, you half expect the ground to cave beneath your feet at THAT point. Not 3 years later… when you’ve adjusted to a less rigorous routine of “maintenance chemotherapy” and less frequent checkups, fewer blood tests and treatments. Not when your sick child has had half a year of kindergarten with no major setbacks, having started to learn how to socialise with peers and make friends, having started to develop better leg strength and gross motor coordination. Certainly not after you have a challenging year of a miscarriage, other children’s health problems, sleepless nights, fellowship exam study and exams, morning sickness of an much-anticipated new pregnancy, selling a house, buying a new house and moving. No… I have to say, for me, for the first time, the fear of Relapse had definitely fallen to the backburner as we’d been trying to negotiate all the other life stressors and demands.

Unfortunately, this is the way cancer works – insidiously and slyly. We had only approximately 7 months to go, had discussed a possible end-of-chemo party with him, and had re-booked Ned’s previously-postponed Make-A-Wish trip to Hamilton Island (a boy who loves beaches!) for July. And we’d actually told the kids so they could count down – a definite sign that this setback was unheralded.

But that niggle that I’ve always had was realised on the morning of Tuesday 20th June, at a usual clinic check-up with Ned and Eleanor… our 2nd D-day, nearly 3 years later. A result that showed that Ned’s chemo hadn’t been working and the leukaemia had come back, infiltrating his bone marrow (by 89% already!), and causing his body to stop producing his normal cells.

As our doctor broke the news to me, whilst Seth was at work 20 mins away and Ned & Eleanor were quietly playing, the worlds of our little Isham family members caved in around me. You know that moment when, as a new Mum, you’ve just been through umpteen hours of tremendously difficult, painful, exhausting labour, and you’re just barely starting to recover when you realise that you have to now learn to breastfeed AND do so every couple of hours 24/7?! Well this was it. Seth and I were already wrecked from the year that was and about to fall in a heap. Yet now we had such devastating news, we had to suddenly make and act on numerous practical decisions that would affect the whole family.  We hastily planned for me to take Ned to Melbourne the next morning to begin 8-9 months of treatment, and Seth and the girls would join me a bit later, after he’d finished school reports and given Lucy a chance to say goodbyes. Then we could start thinking about how to schedule our Melbourne lives, incorporate a new baby’s arrival, find a temporary school for Lucy, hope Eleanor would fit in around the chaos, and work out the finances without the usual income streams (fortunately and very kindly now covered by the Go Fund Me campaign set up by our lovely Carmichael friends).

I had the first 1.5 weeks here at Royal Children’s Hospital, Melbourne, with Ned, and then the rest of the family joined us. It was one of the hardest periods of my life, and I felt so alone – Ned had some horrendous days and nights… so many days of fasting and going to theatre, waking up disorientated and scared, being woken 1-2 hourly every night for urine +/- obs checks, suffering some awful side effects of chemo and infections, being burned from leaking toxic chemo under his skin, all whilst not understanding the sudden upheaval, missing his sisters and Dad, living in a very unfamiliar hospital with unknown staff, feeling miserable, and taking his growing anxiety out on a sleep-deprived, pregnant Mama.

I can’t begin to describe how sad I am about seeing Ned, and the other family members, having to walk down this agonising road again. Every hour of every day, my heart bleeds watching my 5yo sweet boy endure so much discomfort, pain, fatigue, nausea, irritability, misery, sadness, and confusion; his pale face and sunken eyes, his inability to walk more than a few steps without wanting to lie down, his lack of enjoyment in eating anything, his impossible desire to play with his sisters because of fatigue, and his regression in other learned skills and focus.  

2yo Ned at initial diagnosis in 2014

2yo Ned at initial diagnosis in 2014

My heart aches observing Lucy try so hard to adjust to a sudden extraction from her close friends, her regular school routine at a much-loved school, a home amongst bush (which she’d just started enjoying after moving 3 weeks prior), a seeming disinterest in her wellbeing from both her parents… Fortunately, 2yo Eleanor, although more emotional than usual, will always find a way to make friends or burn off energy – whether it’s careening down a hospital corridor in a toy car, or doing gymnastics over the couches at our Melbourne accommodation. It is also rather suffocating and exhausting learning all the new schedules, protocols, medication doses, etc… without interfering and advocating with my professional hat on. Seth and I were already so weary, after living this life, without respite, for 3 years, and the prospect of what lies ahead is daunting, since it includes much more intensive chemo and 2-3 months of Ned in isolation for bone marrow transplant, around the same time that we’ll have a newborn.

It is our boy though, our darling son, who is suffering the most, with infection after infection (now we’ve been here just over 3 weeks, and he’s only had 2 nights out of hospital – both of which he was very unwell and rapidly deteriorating until we went to ED). Whilst we don’t really feel “lucky” at this stage when we see our dear lad suffering, we are immensely thankful for a brilliant children’s hospital with access to world-class treatments and specialists, especially knowing that in many other parts of the world, like Congo where my parents live, many children with leukaemia wouldn’t survive from the outset. We also want to acknowledge the abundant support by several communities that have stood beside us through this upheaval, with prayer and / or constant encouragement – our wonderful church community back in Tasmania, our dear friends, my extended family in Melbourne, and an amazing medical parents’ Facebook group that have pulled together to sustain and provide where needed.  Though I’m aware of many online blogs / journals / articles describing cancer “journeys”, many people have requested regular updates about Ned, and this is the best way of dispersing this information. 

And now to re-learn exactly what I wrote my last blog post about... 

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Contentment

It’s been a while since Seth or I have written since, mentally and emotionally, the last year has taken its toll. Ned’s health is mostly stable at the moment, but the deep fatigue and tedium is well-entrenched and the perpetual battle of juggling Seth’s work and various extra-curricular demands, my work and associated ongoing study, Lucy’s schooling and emotional wellbeing, Eleanor’s infanthood requirements and necessary routines, and Ned’s regular medications, hospital visits, emotional and physical development (which seem to be lagging, with good reason), and the relentless, dreadful side effects of his daily chemo, which involve frequent emotional meltdowns and worsening anxiety. 

I keep casting my eyes furtively back to “pre-leukaemia” times (or as my friends hear it “before D-Day”) to when Seth and I were just like any other ordinary parent of average, appropriately-developing children who deal with regular ups and downs of common physical ailments and emotional challenges… A time when we weren’t apologising for a child’s anxious outbursts, or justifying his reliance on a dummy to sleep; explaining his lack of leg strength and coordination, or emphasising that his itchy, spotty skin is not contagious. A time when we felt bulletproof, we felt like "strong" parents, striving for perfection, with healthy children and ambitious plans, few vulnerabilities and weaknesses, raising our children to be "happy" people, or so we thought.

I've struggled a lot getting my head around the concepts of contentment vs happiness over the last few months. To me, the word ‘happiness’ encapsulates ideas of cheeriness, glee and joviality. 'Contentment' however depicts a more settled fulfilment, a satisfied pleasure. In this day and age, I’ve noticed the concept of happiness is being more and more sold as the essence of life, the pinnacle of ambitions worth striving for, a milestone that must be pursued, albeit an unattainable one. And what better audience to peddle this elusive commodity to than the exhausted, patience-depleted, widely-criticised group called parents. Not only must we be happy in our roles, our relationships and our lifestyle, but our children must be raised with a “perfect”, happy childhood, and nothing short of absolute perfection for their education, diet, health, lifestyle, discipline and beliefs is adequate. Apparently, everyone must endeavour to be the Perfect Parent, and they will be judged if they fall short in anyone else’s eyes or estimation of what the Perfect Parent involves, and how happy their children's lives will be. In my observation, there’s a Western societal fear of sadness, fallibility and vulnerability. As parents, we constantly scramble to seek out what the best education involves and how we can access that for our children; what the best treatment for this particular ailment is and how best we can treat our children with minimal challenge to their emotional state and fewest side effects or long-term complications. We go to great lengths to research what the ultimate foods and most wholesome, purest diet is for our children, concerned about any "pollution" we may confront their small bodies with, and then torture ourselves by reading about how various methods of discipline will cause long-term emotional harm. All this whilst we continually compare ourselves with the seemingly Perfect Parents around us - their superiority and virtue now more evident thanks to social media. 

Finally, and this is the greatest of enigmas, we not only feel shame and guilt if our child has been “exposed” to anything less than perfection, or if we’ve allowed a blemish on their lives, but we also judge others according to our idea of a Perfect Parent. 

How is it that we are in this place whereby sadness is considered a disease and happiness is the default? Regardless of how we choose to raise our children, thereby shielding them from certain uncomfortable experiences and challenges (which, by the way, I don’t think is wrong), every person on this planet will, at some point during their existence, experience fear, frustration, sadness, impatience, disappointment, grief and pain. And what do we hear from those who have experienced hardship in a particularly profound manner? That they’ve developed a strength of character they never thought possible. How are these character traits not something we want for our children? As much as we want to raise children with endless opportunities and worry-free health, shouldn't we want them to also be capable, resilient and empathetic?

I am a parent of 3 young children, and I have been the same - wanting the best outcomes for the best lives they could possibly have. But now I have a child who hasn't complied with that planned agenda, and through his young body have coursed awful, toxic substances which every parent would presumably go to great lengths to shield their children from. So I must re-check myself, my priorities and my values. No-one could claim they've had a blemish-less, disappointment-free “perfect life”, and I've certainly never met a Perfect Parent, yet I've been humbled again and again by the honest, compassionate, loyal friends I've encountered along the way. Indeed the resilience I’ve developed from my life's imperfections have been borne of struggles and pain through the years, and I believe I'm a more wholesome, empathetic and content (not “happy”) person because of it. And so I want to challenge you too, in whatever path you're travelling. 

A brilliant sermon yesterday morning reminded me that “God’s power is made perfect in our weakness”. In my vulnerability of being parent to a child with a life-threatening illness, who is on daily chemotherapy, thereby suffering from constant nausea, tiredness and often misery, I confess to being that parent in the past - desiring the perfect life for my children, and consequently giving those parenting goals undue importance, almost as idols. And my grief over these last few years of losing these lifestyle ideals has been profound, and still challenges me more often than not. 

But “God’s power is made perfect in our weakness”, and His power will be made perfect in my and my children’s weaknesses, not by virtue of me seeking a perfect life for us all. Our children and I will continue to develop joy, resilience, delight, contentment and pleasure in learning to utterly depend on Him when we are not strong, bearing testament to God’s love and steadfastness. Although I wouldn’t wish ill health on any person, I know God weeps with those who suffer, like Ned, and His power, faithfulness and love is superbly revealed in those who come to Him in their weakness. 

Milestone achieved: Remission!

Well we've finally reached Maintenance - the phase of treatment that begins once remission has been achieved, and continues for 3 years. It truly is a joyous, exciting milestone, after the last 11 months of grueling Induction and Consolidation phases - one we almost thought we wouldn't attain at certain points along the way. 

However it's somewhat deceptive to expect that everything's a walk in the park from here on... Ned is not completely cured yet. Remission means that he's responded to the high-risk treatment thus far, and accordingly, there are no leukaemia cells currently in his body. However he needs 3 more years of regular chemo to hopefully maintain that status and be "cured"... and then the follow-up checks for years thereafter to keep vigil for the inevitable long-term health consequences of all the chemotherapy agents. 

So far, he's been on steroids for his first week of maintenance (which was kicked off by another general anaesthetic (GA) on Seth's birthday), also coinciding with a respiratory tract infection for Eleanor, report-writing and exam-marking for Seth, and end-of-term exhaustion for Lucy... all of which have somewhat dampened the joy of reaching this milestone.

We were fortunate enough to participate in our first Camp Quality weekend just a few days ago... A weekend with art activities for the kids, some swimming, a maze, mini-golf (always interesting with kids!), dressing up for Ye Olde photos, and a movie - a wonderfully enjoyable and memorable time for our kids, and, although any rest was impeded by steroid meltdowns and very broken nights, it was a much-needed change of scenery and routine for Seth and me. We were so pleasantly surprised at how caring, helpful and generous the CQ staff and volunteers were - we'd never fully appreciated just how well Camp Quality looks after cancer families prior to our last year. 

So what does this new stage and regime entail for Ned? Well, whilst he'll still have daily chemo, still be occasionally inmunosuppressed, have regular hospital visits, and routine GAs, the intensity of chemo and frequency of these appointments are reduced. It's a new, less rigorous phase of our lives, but it's not without its trepidation or apprehensiveness. My broken sleep at night is largely child-induced, but thanks to my pessimism and resulting nervousness after the first dreadful 6 months of this journey, I have anxious misgivings about what lies ahead for us, and most especially, for our darling, sweet Ned. Please keep us in your prayers - may there be no relapse, and may we rest in the knowledge that it's in God's hands if there is.

 

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Ned turns 3

From Seth:

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. 

 

From Emily:

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!

The decorating process required some parental imaginative cooperation!  

The decorating process required some parental imaginative cooperation!  

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.

The Hand holding back the Red Dragon​

It's been over eight months now since the moment our lives underwent some major changes, both immediate and long-term.

Having kept a journal every day for the last two decades has meant I've developed a habit of reflecting deeply on my life and that of my little family. 

Also, as an artist, I've found visual and artistic forms of reflection as important ways of expressing and processing my thoughts. In the early weeks of Ned's diagnosis I found myself sketching out images of Ned battling a dragon. 

I saw the dragon as representative of the cancer that has attacked his body. I drew a sword and helmet as the chemotherapy, arming my young warrior against the red dragon. 

But naturally, as a sculptor, my artistic reflections turned to more three dimensional manifestations. My gnarled reptilian beasts became a steel wire frame creature with plow shears as claws and other steel objects breaking up the lines that suggested his form like a 3D drawing. The creature was powder coated red, connecting it symbolically to the blood cancer of my son. 

I chose to not depict Ned in this, but rather carved a stone clenched fist, through which I ran a rope noose that went around the neck of the dragon. 

This part of the sculpture represents something that has run deep beneath all our ups and downs, even when the present and the future looked bleak, and without the dreams we'd so deeply longed for.

This hand is the hand of God - ultimately He is in charge and knows the plans and purposes for our lives. He is holding back the red dragon. 

This constant, this foundation, is what helps us keep going, because it isn't easy, especially with the depressing cocktail of lost socialisation with other kids and families, the tattered dreams of overseas work and travel, and the long road ahead!