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!  

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. 

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. 

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.

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.

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.

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… 

The results are in...

This blog post is quite late, yes, but chemo, hospital life, nasty side effects, and end-of-school formalities have had our family life quite disjointed and chaotic over the last few of weeks. The good news, though, is that the result of that bone marrow test was clear, which means that the high-risk chemotherapy is succeeding in Ned’s body, and, at this stage, we don’t have to upgrade it to a trip to Melbourne for a bone marrow transplant, and long-term more intensive treatment - praise the Lord! That was a daunting scenario that Seth and I had discussed many times, and had never been able to generate any plans as to how we’d manage it - ie. who would go with Ned (given that the baby’s due in February), would Lucy come initially, how would Lucy and Seth re-start the new school year here at the end of January, etc etc. Thank God we no longer have to ponder this challenge for the time being.

But back to reality… Given that we’re now staying in Hobart, we’ve had to start Ned on the 2 months of fortnightly week-long hospital admissions for high-dose methotrexate (a chemo drug), and various other chemo agents. He’s just completed his 2nd week of it, but unfortunately this drug gives him nasty side effects. After discharge from the first week's treatment, I noticed he was refusing to eat, and his lips were occasionally bleeding. I looked closer, and noticed that the inside of his lips and all the skin inside his mouth was blistering, peeling off and bleeding… a nasty case of “mucositis”. It was dreadful, and he was in so much pain, he couldn’t eat, and could barely drink and swallow. Paracetamol didn’t help, and the mouth ulcer topical ointments and mouth washes stung the raw areas so much that they did more harm than good. We managed over the weekend, but Ned’s oncologist on Monday nearly admitted him for IV morphine, fluids and nasogastric feeding. Fortunately, Ned’s resilience, ability to continue sipping water, and our prescription of some stronger painkillers for home enabled us to keep him out of hospital for the subsequent few days while he healed. Unfortunately, this is likely to happen again after every admission for this methotrexate (which will be every second week till the beginning of February). Now that we’re aware of this potential though, we’ve put some things in place to prevent it becoming as serious and as painful for him - such as an extra day in hospital before discharge for infusion of a reversal medication. 

Other than that, our days out of hospital were relatively pleasant and joyful - celebrating Lucy and Seth finishing up the school year, with award assemblies, concerts and other outings. We didn’t take Ned to many of them, but his good neutrophil count enabled him to get to a few - which he hugely enjoyed. His cheerful nature, despite the ordeal he’s enduring, is a lesson to each family member, and we’re abundantly grateful that his precious older sister is so loving and generous towards him.

- Emily

 "The City of Ned" - Seth

To help my own visualisation and understanding of Ned’s cancer journey I thought up an analogy. It helped Lucy understand a little, although I may have also confused her more. If you’re an imaginative, creative sort like me, maybe this will help you too.

I imagine Ned as a city. A joyous, happy city, even while rebel factions began to take over and weaken the city from the inside. When other more powerful cities learned of this terrible almost-total takeover, drastic measures were taken, extra forces deployed. But the drastic measures took their toll on this beautiful city, and while in part the citizens recovered, there were side effects.

Agents assisting the recovery efforts in the City of Ned conducted searches and found rogue elements of rebels hidden in secret places around the city. So the battle continued, now with greater ferocity and with collateral damage for all the citizens. There were fears of greater military action - fears that if they didn’t stop the rebels they’d need to burn the very streets to drive them out. But then a messenger came - it was good news, the rebel forces had retreated out of the city, for the moment.

But the battle is not over.

As so many have asked after the good news of Ned’s bone marrow test: “is he cured now?”. Sadly, while yes we’ve no need for a drastic bone marrow transplant, we do have to continue with the high-risk treatment.

We’ve driven them out, but the City of Ned now needs to fortify, secure the walls, train its eligible citizens, vaccinate the young, reinforce the windows and doors, turn their plough-sheers into swords and make the city a stronghold to hold back the enemy. And this is a task that will take over three years. Three years before we can say it is done.

The loneliness of this journey

To all those parents of children who live with chronic or life-threatening illnesses…

 We, too, now share with you in…

 -       the bone-aching sorrow for your child’s possible future, the impact of their illness on their happiness, schooling and personal development, future health, any relationships and friendships, the development of co-curricular, stimulating activities and hobbies… and, worse, the gnawing anxiety within that they may not even have a future;

-       the constant emotional and physical exhaustion of never-ending worry, by day or night, and the associated social faux-pas, misunderstandings, and complete lack of ability to cope every time something new or freshly challenging confronts you;

-       the recurring thoughts of every evening possibly being the last time you kiss your child goodnight;

-       the daily battle to stave off engulfing negativity about what lies ahead;

-       the unfounded guilt at perhaps being responsible, in some way, for your child’s illness;

-       the despair of being powerless to help or change any outcomes even though it’s your very own baby in so much trouble;

-       the constant barrage of questions from a sibling, and the poignancy of hearing their simple prayers for healing;

-       the loneliness of the journey – the constant appointments, the seclusion and isolation at home without visitors or play dates, the obsession with blood counts and germs;

-       the challenge of being the only playmates for your child day after day;

-       the inflexibility when making appointments, organising work days/hours; and by contrast, the flexibility required by others for social engagements or best-laid plans;

-       the tears that flow so freely at the sound of touching words or song lyrics;

-       the dashed life plans for the upcoming months and years;

-       the keen futility felt when unable to assist other friends, mind others’ children, attend others’ celebrations;

-       the difficulty engaging in small talk amidst social interactions;

-       the frustrations of seeing others not take advantage of and responsibility for their own and their children’s health;

-       the grief when watching other physically-able and strong children of the same age playing and tussling delightedly with each other;

-       the dread of awaiting serious test results… week after week;

-       the inability to commit to any social activities, festivities, future plans or holidays, and thus the unrewarding responsibility of not disclosing any “plans” to the children until they’re actually happening;

-       the anguish and hurt you feel at losing friends who haven’t wanted to share in the arduous journey or simply don’t make time to;

-       the heartache, and then eventual pride that emerges from seeing your child, in all their vulnerability, endure so much pain, and ultimately adapt to new routines, the discomfort of procedures, incessant medications, and strangers at their bedside.

 At the moment, I feel constantly exhausted and constantly fearful. Living in “limbo”, with ongoing uncertainty for so long has certainly taken its toll on both of us. The days stretch out before us; the hours ticking by ever slowly towards any answers we may get in the next few weeks. As much as we don’t want to hear a negative test result, we do, in fact, merely want to get this test result out of the way and dealt with, regardless. But ultimately, I know God has us in His hands, and we’re travelling a path that He has foreseen, and this gives us some solace from those fears and anxieties.

 I know not all of you believe in God’s unconditional love for each of us, but, for Seth and me, the hope and peace that our faith affords us carries and upholds us through these bleak and turbulent times. And, during perhaps the most grueling time in my life thus far, the words of the song “In Christ Alone”, sung on the day Seth and I began our life together, are so poignant, and aptly articulate why we feel this peace about Ned’s life:

“In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My comforter, my All in All,

Here in the love of Christ I stand.

No guilt in life, no fear in death,

This is the power of Christ in me;

From life’s first cry to final breath,

Jesus commands my destiny.

No power of hell, no scheme of man

Can ever pluck me from His hand;

Till He returns or calls me home,

Here in the power of Christ I’ll stand.”