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.”

Ned's confidence amidst uncertainty

Another week begins... another week of hospital appointments, chemotherapy, work, school, my own obstetric appointments, etc. Since each week brings such uncertainty, it's always a fairly chaotic, disorganised, unplanned affair!

Fortunately for us, both children are relatively adaptable with changes, as long as they are consistent and known changes. Ned has developed quite the "charmer" personality, and totters around oncology clinic like he owns the place, ever bearing his cheeky grin, and confidently engaging with the staff, other children and their parents. I think in some ways it's a blessing, really, that he was diagnosed so young, because this lifestyle has quickly become normal and "routine" for him. Had it been 5yo Lucy, she'd probably be more aware of the unusualness and differences of a "leukaemia lifestyle" compared to that of a healthy child, and potentially feel quite cheated when having to forego certain activities and opportunities.

Ned now thrives in his newly-found confidence amongst the paed oncology community at the hospital. Having the same few staff in clinic at every visit means he feels comfortable and at ease, having developed unique jokes, habits and routines with each of them... like his coy wave to Helen... 

As a result, generally, Ned is now perfectly happy to have to visit hospital so frequently and sit contentedly still for bloods and various other tests... most of the time...

Currently, we're continuing on with routine chemo and blood tests, as well as regular heart scans to check on the thrombus in his right atrium - which still seems unchanged and fairly stable. It does continue to worry me - moreso during the nights, and during the times when his heart is working harder, like his screaming tantrums. Since he's such a little chap, the high-risk chemotherapy does seem to take its toll on his blood cells, and they take longer than usual to recover - which meant he had to have more platelets and blood transfused last week. And the all-important bone marrow test (under general anaesthetic) that will determine the direction of our lives over the next 6-12 months has been pushed out till next Tuesday (the 18th) - with still potential to be postponed further if his recovery from chemo this week continues as slowly.

Since this journey began, Seth and I have been increasingly aware of our new inability to plan ahead in any way. I now refrain myself from telling either child about upcoming events or plans, even though half their excitement is born of anticipation, to prevent dashed hopes and disappointment. This, of course, will present a whole new world of "organised chaos" with the upcoming Christmas season. I suppose it's a blessing in disguise that the decision about a Summer trip to Melbourne to see my siblings and extended family has been taken entirely out of our hands... since we don't even know if we'll still be in Tasmania in 2-3 weeks. We may even be celebrating our own family Christmas on a day other than the 25th. I do remember, though, from my time working on the paediatric ward here, that Christmas Day is still a celebratory, festive occasion when in hospital, and the staff do their utmost to brighten the kids' day. 

Some moments of relative peace

We’re nearing the end of another week and thanking God that it’s been relatively smooth sailing with no new hiccups so far. The thrombus (clot) is unfortunately still in Ned’s heart, but they’ve decided that they won’t treat it with anticoagulants (blood-thinners) unless it grows… which, according to the frequent scans, it isn’t at the moment. It’s still worrying, but it appears to be stable for the time being.

Ned’s surgery last week went smoothly, once underway – and we want to thank everyone who supported us in any way during that time of high stress. The surgeon managed to retract the port catheter enough (out of the heart chamber), and found it to be still viable… meaning that he didn’t have to completely remove and replace the entire port (into Ned’s other side). Despite a few timing dramas, we re-started chemo quite intensively immediately post-op, and, although Ned was very miserable and uncomfortable for the rest of that day (Wednesday), he seemed to return to his normal chipper self the next afternoon, once discharged home and playing with Lucy!

This last week, for us too, has given us space to pause and reflect more comprehensively on the seriousness of Ned’s current state and its potential consequences. And fortunately for us, Ned has been most amenable to lots of cuddles, kisses, tickles and laughter – testimony to the resilient, cheerful personality God has given him.

There are aspects about this journey that, believe it or not, have been positive… such as the frequent one-on-one times with Ned, the deepened empathy for friends or patients battling cancer or other hardships, the extended family time… for, though Seth and I worked only part-time so the kids were always home with one of us, we were rarely home together.

But besides the obvious disadvantages of this journey, the more subtle negatives manifest themselves to me as the reduced social interactions we’re able to participate in or host, the exhaustion brought by prolonged emotional stress, Lucy’s occasional (unheard, but obvious) resentment towards Ned for the postponed opportunities or family adventures, and the parenting compromises we’ve had to make (and no, I’m not talking about compromising routine discipline).

For instance, Ned had a dummy that was weaned many months before his diagnosis, but we had to re-introduce it for comfort during harrowing procedures and to administer much hated medication (don’t tell our dentist!). And beforehand, we were fairly strict about a minimal sugar intake and daily outside time for both children – ideals which can’t be adhered to when hospital food and long admissions feature so greatly in our lives.

By now, if Ned were able to walk well and quickly, we would’ve tried, and hopefully succeeded at, toilet-training. And at this same age, Lucy had been participating in music groups, playgroups, a language class, swimming lessons, interspersed with lots of bush walks, playgrounds and beach outings. For Ned, however, we’re very limited with what we can expect of him, expose him to, and his social interactions with other kids his age are few and far between. So our home life has to provide enough stimulation for a growing, curious, adventurous 2yo boy… and, thanks to our treasured Duplo and train set (amongst other toys), we’re not doing too badly!

In some ways, despite my frustrations, this has done us a world of good… because, before, I was “that mother” who always wanted to be out of the house with the kids, doing something productive, useful or fun… which couldn’t contrast more vividly with our current lifestyle. And, even though we (particularly I) still have a great deal to learn, it’s made us slow down a little, take the pressure off, and cherish the simpler moments and interactions with both of our precious children. Initially unwanted, never before has the productivity-vs-idle-fun seesaw been so heavily weighted towards the latter.

Over the next few months, this will be amplified. Ned's become neutropaenic again (expectedly so, due to last week's chemo), and will remain so for the next few weeks. In approximately 3 weeks (conditional to having no further delays), Ned will have another bone marrow test to check if he’s responding adequately to the recent high-risk treatment protocol. As I’ve mentioned before, if this test shows a poor response (as the last one did), we will probably be sent to Melbourne for a likely bone marrow transplant. On the other hand, if this test shows a good result and optimal response, we will stay in Hobart, and embark on 2 months of week-in-week-out of hospital (ie. alternating one full week admission, one week at home) for high-dose methotrexate. Although the latter is the preferred option (given that we’ll still be at home), it will be challenging and brings a degree of uncertainty and anxiety because methotrexate is what caused Ned’s rare dystonic (seizure-like) reaction a few weeks ago. So he will have to be monitored very closely over those 2 months.

Seth and I are continually buoyed by the continued support we are receiving. We had expected that by now, at 3 months in, interest would wane and “sympathy exhaustion” would set in, with people realising that this battle is a long drawn-out journey and we’re really only at the beginning. Thank you to those who have defied our expectations and continue to pray, write to us, cook for us, offer financial assistance, and just generally support us (particularly the anonymous giver – thank you!). It’s certainly doesn’t go unnoticed! 

Another daunting hurdle

As you may well know, the last few weeks have been a bit of a test of our faith, in more ways than one. We know God has never promised to respond to our prayers with the answers we specifically ask for, and we know His will extends far beyond anything we can foresee, comprehend or imagine, but we have sometimes struggled to incorporate that knowledge with our absolutely overwhelming desire to see our darling Edward healthy, with fewer hiccups along the way.

Unfortunately, Ned had a slow recovery from the last round of chemotherapy that was administered over 2 weeks ago, such that a specific test has been sent to Sydney to determine if he’s lacking a particular enzyme that would explain his lag. His young body and bone marrow have had a bit of a battering from the large doses of intensive chemo agents scheduled in the high-risk protocol that he’s following, and thus his neutrophils (infection-fighting cells) haven’t bounced back enough to proceed with the next round.

In some ways, days out of hospital, without having to administer medications and deal with nasty side effects, are quite pleasant and enjoyable. But the flip side is that the leukaemia isn’t being treated, and that’s our ultimate concern.

Unfortunately, yesterday, after thankfully discovering in the morning that his neutrophils had finally risen to an adequate level to re-start chemo, we received most unwelcome news that the routine echocardiogram (heart scan to record baseline heart function) that morning had alarmingly discovered a sizeable thrombus (clot) in the right atrium of his heart. Ned had to return to hospital immediately for another scan to determine more details about the clot and its exact location. Needless to say, we watched him like a hawk all of last night.

Thromboemboli, or clots, in blood vessels often present a management dilemma, which is more amplified in a small child on chemotherapy. The thing is, clots are serious because they can be quite unstable, particularly in the heart, and may cause significant damage by blocking a blood supply or throwing off smaller blood clots that get lodged in the lungs (otherwise called a pulmonary embolus). The treatment is an anti-coagulant (a blood-thinning drug), which, if overdone, can cause the other extreme of excessive blood thinning and bleeding.

In a child as young as Ned, who is already on chemotherapy and frequently requires platelet infusions due to his fluctuating platelet levels, starting an anti-coagulant is quite a risky venture because of their heightened potential to unexpectedly and surreptitiously bleed, particularly in their brains – arguably a greater risk than leaving the clot in situ. This debate is what our oncologist, a local cardiologist, and a few Melbourne specialists are focusing on currently. The general consensus after today is that leaving the clot is the less dangerous option because, from the scans, it appears to be essentially stable.

What caused this, you may wonder? Unluckily, the catheter portion of Ned’s Port-a-cath (the sub-cutaneous valve under his right arm) has advanced itself 4cm into the right atrium (upper chamber) of his heart, and the tip of it seems to have scratched the heart wall over time, which has caused the thrombus to develop.

This catheter misplacement means that we can’t use it in its current state for chemotherapy administration, which means that Ned must have unexpected surgery early tomorrow morning to withdraw the catheter from its current location in his heart, without mobilising the clot itself. If that fails, then he must have the whole Port-a-cath removed and a new one inserted – akin to the surgery he had in week 6 of treatment (which I’ve posted about in an earlier blog entry), which has a fairly prolonged recovery. After surgery tomorrow, we’ll need to get back into chemo immediately to prevent further compromise to his leukaemia treatment.

So this is the next challenge. I’ll be taking Ned in tomorrow morning for his surgery, since Seth and Lucy will be at school. Please uphold us in your thoughts and prayers, since we’re all rather anxious and emotionally exhausted at the moment. All of your encouragement, support and ongoing messages have been so appreciated!