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…

Edward Isham