Never before has the Easter period been so intimately woven with loss and deep sadness for us. At Easter last year (from when most of the attached photos were taken), as we participated in the RCH Good Friday Appeal, we also embarked on our crowdfunding campaign to get Ned to Seattle for a new clinical trial treatment. We harboured such uncertainty, concern, dread in realising the urgency and necessity of our expensive decision, especially when we realised that our lengthy application to our government’s overseas treatment program would be denied due to conflict of interest. But then we were fuelled by hope. Hope in the form of covered finances to give Ned a lifeline. And after initial shock that Ned’s leukaemia had mutated and proliferated so rapidly in the interim, followed by despair that he might not get back home, that very Seattle treatment bought us 10 months of precious time.

What a difference a year makes. There was always hope that we could cling to - hope that the next results would show improvement, that the treatment would work, that a miracle would occur…

And they did; the hope was not unsubstantiated - with every shocking result or symptom showing the almost-unparalleled, insidious nature of Ned’s leukaemia, and its ensuing palliative discussions, a miraculous turn of events would then follow, stunning even our medical teams. Whilst we’d confronted devastation and despair time and time again, there was always a tiny glimmer of possibility.

Now, though, when waking to our new reality every morning is so very painful, when time as a family feels so bizarrely empty, when we feel consumed by convulsions of sorrow and angry tears flood our souls for all Ned’s suffering, his unrealised potential, our family’s brokenness; when death is so final, where then is hope?

“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life” John 3:16

There have been so many questions put to me about how we could possibly have faith despite our trials and bereavement. But we don’t just cling to God’s existence and sacrifice just because it makes us feel better about Ned’s death. We don’t just say our prayers because it makes the answers we give to our kids less painful. We actually don’t know the answers. But our questions and tormented path don’t negate God’s existence. They don’t negate the historians’ and eyewitness accounts of Jesus’ torture, death and the empty tomb. They don’t negate our experience of His guidance and peace through such dark tunnels, though I railed against Him. They don’t negate God’s remarkable act to demonstrate His love for us by sending His son to restore our broken relationship with Him, despite our actions, so that we can have life beyond our earthly existence. And it is this knowledge that has carried us through the most harrowing of turmoils, through the unanswered questions; it has filled us with a peace far beyond any clean bill of health or positive bone marrow result.

Though the parameters of our physical lives have been governed by cancer for so many years, our Life is defined by faith and hope. Hope that there is life beyond the grave, that death is not final. And today, as we have celebrated Jesus’ resurrection, it seems apt that I articulate how we have purpose and hope, despite our grief, for we know that we will certainly see our son and brother, our beloved Ned, again.

(For those who would like a link to the recording of the funeral service: https://vimeo.com/329538224)

Edward Isham