Dear friends. Late last Thursday morning, on a scheduled Melbourne visit for medical reviews, in an airless hospital room, I found out that Ned’s leukaemia has shockingly made an aggressive comeback and has been rapidly taking over his bone marrow, much to our anguish and horror. The “hurting legs” that he’s been complaining about was not just over-exertion or physio exercises. There are now no further viable treatment options, and we’re going to prioritise quality of life and family time above all else. From naive to numb in an instant. A brutal shock we’ve experienced 5 times now - 3 of which when I was on my own. And the dates and circumstances of each are deeply etched in our minds.

The boys and I flew home immediately Thursday afternoon, and we’ve been trying to process the news since, whilst still maintaining household and family life as normally as possible, and disseminate the news gently. Disclosing this development to Lucy and Ned (separately) was grim, but in some ways, our consistently un-emotive, undetailed presentation of simple facts at every stage along the way has meant that Ned has always taken everything in his stride, and seems now more concerned about having a new intravenous line for occasional chemo to reduce disease burden and alleviate symptoms where possible. Fortunately, other than some fatigue and leg pain, Ned’s still in relatively good spirits currently.

But folks, though we don’t have definitive answers, and your questions are most likely our questions too, we do sadly acknowledge that this is likely the end of a very long, challenging road. And time is not plentiful. We intend to continue the girls at school as usual (and for Ned when he’s not too fatigued), Seth will continue with his part-time work (teacher at the same school) while he can, but I will not yet go back to work as planned. We’re also trying to very hastily plan and re-book Ned’s oft-postponed and keenly-wanted Make-a-Wish beach holiday in Hamilton Island for as soon as possible.

Whilst we have often found incredible encouragement and community from social media, and we will continue to do updates when we can, we’re going to take a step back for a time in the interests of self-preservation and family time. We genuinely appreciate contact, however may not be able to respond or articulate our needs. In this gap, some dear friends of ours have offered to kindly step up and help coordinate support where possible, and the contact person for this will be Stelle Carmichael: stelle.carmichael@gmail.com. Whilst we’re not actively seeking financial support, we thank those of you who have offered - Seth’s workplace and the kids’ school, Southern Christian College, are holding donations marked ‘Isham’ in their account (Southern Christian College, BSB 633 000, Account 144053006), but please don’t feel obliged.

We are so very heavyhearted that, after his last 18 months of suffering and our family’s displacement… after EVERYTHING… it has come to this, and don’t understand why we couldn’t have spent those 18 months instead making memories. Perhaps God was using that time to remind us, and everyone around us, that time is precious, that each of our children are gifts from Him, and though much of parenting and life is really difficult, it’s so important to really indulge and “be” in those golden moments. Just be. In each moment. We are feeling extremely thankful that we’ve had these last 2 months of blissful ignorance back at home in Tasmania – time that was bought by each of the previous treatments.

Because even now, back in this hopeless darkness and anguish that is somewhat familiar but somewhat altered, there are still moments of joy, of gratitude and of humour, as we tenuously flip between acceptance, denial, and bitter sorrow - especially for his beloved, devoted siblings. Above all, as our dear friend reminded us in church this morning: “The eternal God is our refuge, and underneath are His everlasting arms” (Deuteronomy 33:27). He will walk with us every step of the unknown ahead, comfort us when it’s too hard and grief is overwhelming. And in that knowledge, despite the torment and despairing anguish, right now there is some tangible peace for us both.

Edward Isham