Our beautiful, courageous son. Rest in Peace now. You couldn’t have fought any harder.

• Edward (Ned) Isham 19/05/2012 - 29/03/2019 •

Emily’s Eulogy 04 - 04 - 2019

What a journey this has been. A warpath. For a boy who seems to have captivated and won so many hearts merely with his cheeky smile, unassuming, kind nature and resilient character.

I speak those words so flippantly, but they were the essence of Ned.

· He was kind – the day I found out he relapsed the first time, when I was in clinic on my own with him and baby Eleanor, he could see I was upset, kept patting my knee, looking up at my eyes, asking “are you ok, Mummy?” He’s done this every time when I’ve been upset and my eyes have welled up.

He and his sisters also had a lovely tradition that Lucy started years ago when she realised Ned wouldn’t be going to as many parties or events as she was – (not to my knowledge) she’d ask the party host if she could take home a piece of cake or spare party bag for her brother. Consequently, well-intentioned Eleanor started saving things from her outings (eg. a half-eaten muesli bar for Ned and Lucy to share), and dear Ned, whenever offered a lucky dip or gift as a reward after procedures, he’d always get an extra or put some aside for his beloved sisters. He’d go to great lengths to choose out a specific Frozen bandaid for Eleanor from hospital, and a sticker for Lucy.

Since Eleanor had determined that her guinea pig, Giraffe, was a girl (but we knew all 4 were male) and got very stroppy when anyone suggested otherwise, he would humorously say “yes, Giraffe’s a girl, Eleanor”, then turning to us with a cheeky grin, hand covering his mouth, and whisper “he’s really a boy”. He was concerned for her when she was in hospital (though she loved every minute) and pep-talked her, he was sad when Lucy was being disciplined, trying to remedy it by siding with her, and he cuddled Gilbert during his tantrums.

· He was cheeky – he loved spiders, and with them, he loved teasing anyone and everyone, including his arachnophobic aunt and great aunt, and poor unsuspecting nurses working on the wards. In Seattle, with the encouragement of one, he tiptoed out to their work station, and placed a few on keyboards and work computers and then called out to them, giggling at their shock and horror. He also knew full well that my Dad and his family barrack for Hawthorn Football Club, and when he realised that the Sydney Swans were arch rivals since their 2012 premiership win over Hawks, he decided to provoke and goad them all long-term, particularly Dad, by making the Swans his team – hence sparking his love of the colour red… further fuelled by his love for fire engines and super-heroes.

· He was so very resilient – he hated procedures, and actually became more anxious and sensitive to them as the years went on (justifiably so). But he knew that they were non-negotiable, and though he cried or sometimes screamed, he would endure it, and once it was done and cuddles were given, all was forgiven and forgotten. Never did I ever hear the phrase “it’s so unfair” uttered by Ned – though he expressed sadness and dislike for certain procedures, he never questioned what discomforts we had to subject him to.

He still thought of others. During his last night, after I tended to yet another vomit and cleaned him up on his mattress next to our bed, I leaned down, kissed him and whispered “I love you Neddy boy”, and he replied quietly, in his half-delirious state “I love you too Mama”.

It’s a cruel irony that the child who we’ve spent the most one-on-one time with, caring for during his most vulnerable moments; the one in whom we’ve seen the most deep resilience, courage and raw emotion, is the one we’re now mourning.

But I will not say that Ned lost the battle. Look around; look how many people are here, united simply because you have loved Ned or walked alongside our family. No, cancer has not prevailed. In my darker days, I have and will continue falling to pieces, feeling sometimes like cancer triumphed; I will grieve for his absence, for the gap left in our family, for the lost experiences and memories; I will struggle to get out of bed, feed and dress, cajole and encourage our other children; I will question God about what the point of all of this torment has been. What was the actual point of all of this – our enormous struggles, Ned’s suffering, our relationship tensions, our lost experiences, displacement, grief… what was the point? But then I realise that Ned was a precious gift from God – a gift in the form of a perfect 3.5kg baby born in May 2012, into a life of only 6 years, 10 months and 10 days. 216,360,000 moments (seconds) approximately. We did everything humanly possible to treat his cancer, and yet it didn’t respond. Though we weren’t to know, nothing could have prevented this end. But God gave him to us – to me, Seth, Lucy, Eleanor and Gilbert, to us all – and how much richer are we for knowing him. Not all of those 216,360,000 moments have been full of laughter and joy, but gosh the emphasis on the life’s transience thanks to Ned’s joie de vivre juxtaposed with his physical fragility have really made me live most of those moments as a much more present and grateful mother, trying to immerse myself in each moment as it stands, rather than fearing the future. And God has graciously given me the aliquots of strength I need to get me through just one moment at a time.

I’m so glad that, when this all began, Seth and I made the decision to intentionally “make memories” – when adventures seemed like way too much effort, when we were just too exhausted, when the energy expenditure required for an outing or event seemed to far outweigh the joy for us, those moments are when we’ve looked across and reminded each other that we’re “making memories”, and those times have often proved to be the most poignant and memorable.

Because if anyone had anything to fear, it was Ned, and it was us. Starting our 2yo on heavy cancer treatment 2 weeks before my fellowship exams, which I consequently failed, having our 3rd child and then another, re-sitting my exams, selling our house ourselves in pursuit of a nicer home with bush for our kids to grow up in, and then Ned’s relapse in June 2017 just after my final exam, just after our house move, when I was 29 weeks pregnant with Gilbert, and relocating entirely interstate. The initial 10 months, mostly admitted in hospital, included Gilbert’s birth and putting our younger daughter through procedures. Then a 2.5-month trip to Seattle with so much uncertainty about outcomes and many panic-inducing unknowns (like traveling internationally for 30+ hours with 4 kids, one unwell). Then returning for another 6 months in Melbourne and a risky 2nd bone marrow transplant. There were so many sleepless nights, gastro episodes, heartaches, logistical complications, and just sheer exhaustion in between. Seeing each of our family members suffering has been awful, but watching Ned suffer was the worst – it often broke me. His was not a fun-filled life. But he still found joy and laughter. God has been faithful in only opening one door at a time, one moment at a time, and we’ve learned to trust him implicitly. And He knows intimately the pain of watching a child suffer. His peace is what filled my soul as my dear boy took his last breaths resting in my arms, warm in our bed.

I’d like to acknowledge all of the other parents living in the shadow of childhood cancer… to acknowledge all the anxiety, the waiting, the despair, grief, horror, fear, disappointment, broken relationships, interrupted hopes, and suffering. It’s a dark, dark place that you can’t possibly convey to those on the outside.

We’d also like to say thank you. Thank you to those of you who contributed to getting us to Seattle for treatment gaining us precious time with Ned. Thank you to Seth’s parents, Steve and Marion, and my parents, David and Prue, having returned from their work in Congo several times. They have all continued to love and care for us along this warpath.

Thank you to those close family members and friends – you know who you are – and our church family and community who have carried us and interceded for us in our despair and heartache. Thank you to those who have made special trips and travelled interstate to be here, to the firefighters and emergency personnel paying tribute, and to so many behind the scenes who have worked tirelessly to make today happen.

And thank you to everyone who has followed our lives, who has come to mourn and celebrate with us today, who has been loving our family, and who is now sharing grief with us of losing a boy who has had such an impact on you.

And to our other children, Ned’s best friends:

Lucy, we love you just as much as we loved Ned. We saw you – caring for Ned, looking out for him, enjoying his company, making up games, reading books to him, cuddling him, teaching him to walk and talk, singing to him and crying for him. We heard you enjoying conversations in your shared bedroom after lights-out. We saw you, and we both think you’ve been such a beautiful big sister to Ned.

Eleanor, we love you just as much as we loved Ned. We know you loved dressing up, building duplo, painting, riding bikes, chatting to him, making him giggle and roll his eyes at you. We know that you miss him already, but we love that he had you as his crazy little sister during his time on earth, keeping him on his toes every day.

Gilbert, we love you just as much as we loved Ned. You were his companion through both transplants, the one he taught to play cars, to strum a guitar, to look out the window for trams; the one you looked up to, and we’re sad that you won’t get to know him as well. But thank you for dispersing the tension and bringing us all delight through dark times.

Ned knew he was going to be with God. Though we didn’t put to him precisely what was happening, I had many conversations with him during the car drives to and from hospital about what it will be like in heaven, with no more hospital or needles, how he’ll be with Great Grandad and his friend, Zoe, how Jesus will be there preparing bedrooms. He knew he was getting sicker, but he was most certainly not fearful. And I know he would’ve run and leapt into one of his beautiful whole-body hugs with Jesus when he finally went to Him.

I’ll end with his gentle, unassuming prayer – the words he prayed unprompted with me at bedtime a few nights before he died:

“Dear God. Thank you for loving me. Please help everyone have a good sleep. I love you. See you when I get to heaven. Amen”

Our Ned knew it was not the end. Though he is no longer in our sorrowed arms here, we know he is in the everlasting arms. So let his life be a testament to God.

Edward Isham

Emily’s Eulogy 04 - 04 - 2019