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! 

4 Ishams and a baby

So... how are we going since my last update and Eleanor's arrival? 

I have to say that the transition from 2 to 3 children hasn't been as arduous as we'd anticipated... although, as we see Eleanor's jaundice slowly wane, her feisty nature is gradually surfacing and reminding us of her older sister's determined personality - even at only 5 weeks of age! I've been re-familiarising myself with evening baby-settling pram walks around the block of late... 

Lucy and Ned adore "baby Nora", and are often competing for cuddles or vying to be the chosen "dummy-replacer" - one usually more gently than the other... Thankfully, also, Eleanor is beautifully healthy, breastfeeding well and thriving. 

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Ned's been coping with the usual chemo routines well, as well as the unscheduled visits and extra interventions, but I do feel sorry for him so often. At only two years old, he deals with daily pain, nausea, loss of appetite, low energy and tiredness - and he's lost his hair again. And it's hard for us to not give him special treatment and skimp on discipline when we know how miserable he must be feeling, but yet we also realise that children need boundaries and we can't unfairly neglect household rules just because of his illness. He's a trooper though, and we are so proud of the way he's learned to bravely handle procedures, frequent trips to hospital, and all the constant medication doses. 

I suppose, for us, the transition to 2 children and a baby hasn't been as life-altering because we're so used to being quarantined and housebound since Ned's diagnosis. So the lives led by newborn Lucy and newborn Ned - of daily outings, playgroups, library visits, cafes, weekend adventures, etc - are very different to newborn Eleanor's current life. 

As I watch her grow, though, I still grieve for the health Ned once had, and worry about what her future holds (probably unnecessarily)... for Ned was once a healthy newborn who had also been given the all-clear and thumbs-up by the paediatrician at his baby checks, just like Eleanor. I worry about the chemical agents around the house (his medications), the effects of his "toxic" bodily fluids and whether he can kiss her or not, whether I should be laundering their clothes together or separately... 

I guess, for me, it feels somewhat akin to when I used to do on-call work... and feeling like I could never relax during my shifts because of the potential of being called and what that entailed; however now, I feel "on-call" all the time - moreso than before leukaemia entered our lives. From the moment I wake, my mind's constantly buzzing with scheduled medications, doses, times, possible side effects, medication interactions (when and what he can/cannot eat, be in the sunshine, etc), regular temperature checks, other symptoms of low blood counts (bruising, anaemia, etc), hospital appointments, the likely knock-on effects of an emergency visit to hospital at that particular time, whether the plans of the day could be altered if needed and who I'd be able to call if we had to rush in, whether I can do school drop-off/pick-up and other errands with Ned (if he's not neutropaenic) or will I have to wait till someone can help, the next planned chemo rounds and what dates and planned events they'll interfere with... and above all, the constant guilt I feel about my children's mental health - whether I'm making myself available enough to each of them, amidst the chaos in my brain and of life. It feels almost like each day is an item on my checklist... and I feel relief when, at day's end, I can tick it off and go to bed. I know this is not an unfamiliar feeling to parents of small children, but it does feel much more intense for both of us now than ever before. 

Fortunately, through all this, God has been faithful in providing us with everything we need, giving Ned a cheerful and tolerant personality, a good sense of humour and a winning smile, and some recent months of no major complications or setbacks. We are ever so grateful for the help we receive as a result of my parents' temporary return and Seth's parents' availability, as well as our ever-present support network of friends and church members. We thank God that Lucy was recently able to celebrate her 6th birthday with a group of her dear friends, and we continue to be abundantly grateful for darling Eleanor's arrival and the joy she's brought to our lives. 

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Our newest family member

This is our beautiful Isham family newcomer, Eleanor Mary. She weighed 3.94kg (!), and arrived on the afternoon of Tuesday, 17th February, after a rather intense (moreso than the last two!) labour. We're all besotted with the darling girl, and she's being inundated with cuddles and kisses from each of us.

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Given that our first two babies slept minimally and screamed fairly constantly, we've been earnestly hoping and praying for a placid, settled baby who will obligingly adjust to our oft-chaotic lifestyle and the demands of a rigorous chemo schedule. So far (at day 9), these prayers have been answered; she is settled, feeds well, and screams minimally... Encouragingly, I'm not feeling as bone tired from the regular night feeds as I did at this stage previously.

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In other news, my parents have taken unpaid leave and returned from their missionary work in Congo for a few months to be around and to help with the juggle. Whilst we wholeheartedly acknowledge the importance of their work and their invaluable contribution to theological training and audiology in Congo, we're so thankful that they have taken this time away so we can have them at present, and we've all been very excited to see them again.

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More changes approaching...

Our lives are mostly now calibrated according the rapidly-approaching culmination of this pregnancy… The terms “BB” (“Before Baby”) and “AB” (“After Baby”) are oft heard when discussing upcoming events and commitments, and often dictate our decisions. Funnily enough, Edward’s illness enforces us to be mostly housebound already, so having a newborn may not drastically alter our lifestyle.

The impending arrival of this much-desired little blessing, however, brings some concern and overwhelm. Ned, at present, has been struggling with regular 2yo assertiveness, lots of emotion and uncomfortable side effects – which has made life at home rather chaotic and challenging, especially with the return to school. Additionally, Ned’s chemo is again delayed this week (as a result of his bone marrow’s slow recovery), and thus he will be starting dexamethasone (a steroid) at the beginning of next week, after another general anaesthetic on Tuesday morning. Steroids are renowned to make children into “hangry steroid monsters” (and yes, that’s a deliberate combination of “hungry” and “angry”)… not something I particularly want lurking in my house when bringing a newborn home, especially now Seth and Lucy are back at school. Mentally, I’m preparing myself for the inevitable exhaustion, constant tension and sheer frustration of tending to both a frequently-feeding babe and a grumpy 2yo, but unfortunately this doesn’t prevent it still occurring.

So, rather than talking about my concerns, I thought it might be more refreshing to focus on a few blessings we are superbly grateful for…

- The ongoing support and encouragement from our friends, church and community, especially as we’ve been trying to alter our house to accommodate our living requirements now that we're staying here long-term, and the need may arise for an emergency helper to often stay the night. 

- Our healthcare system that provides 24/7 specialist care for Ned whenever he needs it, be it from the many skilled doctors, the allied health workers, or the wonderfully caring, playful, cuddly and sympathetic nurses (who even sometimes babysit!), the easily-accessible resources and medications – all essentials that wouldn’t necessarily be available so readily in countries like Congo, where my parents live.

- This darling girl, Lucy. She’s our eldest, and has guided us into parenthood, braving the way for her siblings. Her tenderness, gentleness and loyalty towards Ned constantly impress us and we are so proud of the way she has handled our lives’ abrupt changes without resentment. Although she still tests Seth’s and my patience limits and discipline boundaries fairly frequently (as those near and dear to us are well aware), her love for her little brother, and her unborn sibling, is profound and always perceptible, and for this we are incredibly grateful.

Last, but certainly not least, we thank God that He continues to uphold and sustain us during these times of weariness, anxiety and fear. Life would seem all the more empty and devoid of hope if it weren't for His promises of provision, His love and presence amidst the chaos. Despite the lows in this journey, we truly are blessed in many other ways. 

I suspect that, considering this pregnancy is now “term”, the next blog post will be introducing our much-anticipated newest munchkin… and I’m sure the lack of logic in my writing will be entirely attributable to my frequent night wakings! 

Joy amidst the mundane

I am at a bit of a loss about what to write this time… how to update you on the fairly mundane, routine, clinical lives we lead at the moment. Being on school holidays has allowed Lucy (and Seth) a bit of rest, but hospital admissions don’t “break” for the Summer, and Ned’s side effects during and after these stays have certainly dampened our joie de vivre and usual holiday adventurousness. Fortunately, daily play dates for Lucy with close friends have allowed her to not bear the burden of long hospital days, and the love she has for her dear little brother is very evident in the way she greets and plays with him during her regular visits.

Unfortunately, as I mentioned, Ned’s sensitivity to his chemotherapy medications has continued, with ongoing unexpected side effects. We got some answers this week, when a test result returned from Sydney showing that he lacks an enzyme involved in the metabolism of chemotherapy. Whilst this has no long-term bearing on his prognosis, it does mean that the road there will be tougher and longer because the doses become more toxic in his little body, causing continued over-sensitivity and slow recoveries from every round of chemo.

As you’ve probably seen, however, from the many photos and videos I’ve posted over the last few months, despite his oft-felt misery and discomfort, his underlying resilience, cheerful nature and cheeky smile often emerge and buoy him and us – ever aware that there is little we can do but continually show our steady, unwavering love, affection and compassion, and commit him to God’s hands repeatedly.

However there are some very delicate balances to be sought in this journey of parenting such a vulnerable child… ‘Tis a fine line between being cautious and being too over-protective or overbearing, for instance; between fear and realism; between encouraging a reluctant eater to consume his dinner and plain force-feeding; between appearing as a resilient, confident, tenacious parent (as always hoped) and becoming an emotional wreck; between being full of cynical resentment and being grateful for the small blessings… And these challenges are the ones I, particularly, am struggling to master. Because, to be perfectly honest, even now, nearly 6 months in, Seth and I still sometimes have to pause in disbelief, take stock, and re-assess what has become of our “healthy” family and life plans. It was a life, led by two very internationally-minded parents, very nearly headed to a developing country so culturally disparate to Australia; and yet now, we have been advised to plan no overseas work or major travel for at least the next decade…

Now, the course of Ned’s disease determines the journey our family takes, and the joy or grief we experience throughout will most probably always be tinged with an element of regret - which, my dear husband (of 9 years on Wednesday 21st!) is able to adopt more optimistically than me. Some of you may be familiar with tracking such a rocky path in some way, to a certain extent; and know just how to forge on whilst remaining faithful, and seemingly embracing the unfamiliar and uncertain…