Dr Hannah Noel with Elise, now aged 21 months; Father Jared was able to spend nine precious months with his daughter. Photo / Dean Purcell
Dr Hannah Noel with Elise, now aged 21 months; Father Jared was able to spend nine precious months with his daughter. Photo / Dean Purcell
Dr Jared Noel and his wife, Hannah, decided to have a baby even though they knew he was soon to die of cancer. In the end, he lived for the first nine months of baby Elise’s life. In these book extracts, the couple reflect on what Jared’s imminent death means for their family.
In October 2013, the Herald brought you Jared Noel's story. The 32-year-old Auckland doctor had terminal cancer and had just one wish before he died - to meet his first child, his yet-to-be-born daughter.
Dr Noel was diagnosed with bowel cancer in November 2008 and battled through 66 rounds of chemotherapy and two major operations.
Although he knew the cancer would kill him, he and wife Hannah, also a doctor, decided to have a baby. They hoped he would live long enough to experience fatherhood, even if only for a short time.
Elise Alexandra Grace Noel was born on January 17 last year. Her father not only helped to deliver her, he lived for a further nine months.
In the weeks before Dr Noel died, he sat down with author David W Williams 21 times to tell his story.
He had been writing a blog about his cancer journey and wanted it published.
Message to My Girl - a dying father's powerful legacy of hope, published by Allen & Unwin, will be available from Monday. The book's first page sums up Dr Noel's mission in two words: "for Elise".
It is the afternoon of Wednesday, September 24, 2014. And I am dying.
I most likely will not die today or tomorrow. Next week perhaps. Or the week after. And while I very much want to live, if I am honest, death cannot come quickly enough. I am ready. Ready to be welcomed into the next phase of the journey, whatever it is.
I have been dying for almost six years, so I have had plenty of time to get used to the idea. But dying of a terminal illness is not like a steady decline to the end. It is a dynamic battle with possibilities, probabilities, inevitabilities.
You are given bad news. Then worse news. Then you pick yourself up and decide to keep going, to keep holding on to your calling.
And then you find some hope. And then the hope is dashed. And then a miracle occurs. But the miracle occurs in the context of a reality you can never fully deny. You are dying, and the end has to come some time.
For me, that time is now.
These extraordinary years will end here, in this room, where the family will gather around the bed to see me go. None of us know the day or the time-nature will take its course-but we know that it is soon.
And I am ready, apart from one, unfinished thing. Eight months ago, Elise came into my world under remarkable circumstances. The day she was born, I should not have been alive. My life was extended because a whole lot of people - some friends and family, but mostly people we had never met - did something extraordinary for us. For Elise. And because of that, on January 17, I delivered Elise, my daughter, who I thought I would never see. And moments later, when I got to hold her against my chest, the significance of that moment sank in.
But I realised, some weeks after we brought her home and began family life right here, in this house, that I would die before she truly knew me. She has the photos, and she has the stories, and she can read almost six years' worth of blogs. But Elise will never know me. Never remember me.
And so the day that I came home to die, I determined to leave her my story. Not just my life compiled into chapters, but all the things I have wrestled with and discovered and overcome.
The hard things as well as the good things. The extraordinary calling that I was given early in life to achieve great things, and how I came to terms with the knowledge that I would die before those things could be achieved.
We all have remarkable stories. My story is no more special than anyone else's. But the legacy I want to leave is bound up in the experiences I have had, and what I have learnt through those experiences about life, love and dying.
If we had 40 more years, these are the things I would tell her myself, over time, so that Elise could draw from what I have learnt. I want her to know the peace I have known. And I want her to understand and experience the hope I have had, and the fearlessness with which I have faced not only death, but also life.
But the reality is, we do not have 40 years. We have just a few more days. And in all likelihood they are days she will never recall. But Elise will have this. My story. My reflections. My heart.
I look at Elise sometimes and see a different baby-each day something new. New skills she learns. Fine motor control she is developing so quickly. New things she is able to do. Milestones she is reaching all the time. We watch for them, Hannah and I, as doctors more so than parents, those subtle signs of development that other parents might miss.
In all of these things, I have had to come to terms with letting go. When I cry with Hannah, in the evenings when we are finally alone, it is because of what I will miss out on in years to come. In a strange way this is what gives me peace.
The knowledge that there is little point prolonging my life as I currently have it helps me to welcome my own mortality. It is not another playtime on the bed that I want. It is a lifetime. I want to be there for Elise's first day of school, and for her first friendships, boys, learning new things, discovering the world, broadening her understanding of other people and of the privilege she was born into.
Hannah and Jared Noel with baby Elise, the child for whom he wrote his book.
On the fridge door our names are linked together in oversized Scrabble tiles, and when the door is open you can see these names as you approach the house from the long driveway. Hannah and I have talked about the future, and these have been some of the hardest conversations for me. But even in this I have found peace, even in accepting there will be a time when my name is no longer on the fridge door.
Elise will not remember this time. And for Hannah, this period will be a blip one day. In 30 years, these six years will be a distant memory. I hope they will be a significant memory, and that the memory shapes Hannah for all of that time, but she will move on. That is what I hope, anyway. I want Hannah to follow her own dreams.
I have a handful of moments left. That is all. But that is everything.
It is in the moment that I can stave off the effects of the dying haze and reflect just a little more on what remains . . . the meaning, significance and purpose of these last days. Because every moment matters, and I can appreciate the now until there is no now left. And who knows? Perhaps there will be something I say in that moment that brings me to life in her mind and helps Elise remember. Because that is my greatest hope. To give her just a glimpse of who I was. Of who I am. And then I will die.
Jared passed away ona the morning of Wednesday, October 8, 2014, a full two weeks after working on his story for the final time. The night before he died, Jared was lying in his hospital bed in our room, peacefully, unconscious. The family had gathered, believing that his time was near. Elise's evening routine was to have her last feed then say goodnight to everyone, including Jared. And it was time for her to say goodbye. I asked the family to leave the three of us for a few minutes and closed the door.
And we prayed together as a family, as I have prayed with Elise every night since she was very small.
There, just the three of us in the room where we had spent so much family time in recent weeks, and where Jared had worked so hard to complete the telling of his story for Elise, we asked Jesus to take Daddy to heaven. Because this was what Jared wanted so desperately.
Anyone who saw him in those final few days was praying that same prayer - for the ultimate release from his suffering, which was so painfully evident. It is hard to know whether Jared was ever aware that the three of us were alone in that space at that time, praying that prayer together. Who knows whether he heard us, or perhaps even sensed that, at least from the perspective of the two people who were most dear to him, he was being given permission to go.
He died at 25 minutes past eleven the following morning, surrounded by his family, enveloped in love.
We miss him every day.
One of the things I missed the most in those final few months was Jared's sense of humour. I remember, in his final few weeks, making a joke I fully expected him to laugh at - but his response was, "That's not funny." It caused me to stop: I was losing parts of Jared before he was even gone, and his humour, that lightness about him that I knew and loved, was an early casualty.
And yet, I don't need to think too far back to recall moments of real laughter. We have a beautiful video of Elise. It was around late May, during our trip around the North Island visiting family and friends. Elise is about four months old and she is sitting on Jared's knee. One of her cousins, who was about eighteen months at the time, was looking at Elise and laughing. So then she would laugh. Spontaneous laughter was quite new for her at the time. So then the cousin would laugh, then she would laugh. And Jared was just giggling the whole way through it. Elise will enjoy that video one day.
I am so relieved that Jared has been released from his suffering. And so incredibly proud of the life he lived, which has spoken such volumes to so many people in the way he navigated his course and shared his suffering and his hope with the world.
I think what will come later is the inevitable loneliness and missing everything he was in my life, but I am just so relieved for him that those dark and difficult days of waiting for the end have passed.
It was very clear to me, as soon as he died, that his spirit was gone. I looked at his face and he was just different. We had said our goodbyes.
Jared was ready to go weeks before he died, but why his body held on for far longer than his mind or his spirit wanted to was a mystery to him. He woke up the Sunday before the Wednesday he died and said to me, "Why am I still alive?" I did not have an answer for him.
There was very little quality to his life by that stage, and I know that was where the question came from. It seemed so pointless that he should have to get through the days. Mercifully, within 48 hours of saying that, he lapsed into unconsciousness.
It broke my heart, watching Jared over those final days and weeks, facing that very imminent mortality while being at a loss to do anything about it. While the inevitability of death is true for all of us, not all experience the pain of the body holding on, long after the mind and spirit are ready to leave this world.
I have peace about Jared dying. I have no regrets, any more than Jared did. Between the two of us there was nothing left unsaid.
We worked really hard at keeping short accounts in those final months - of being so open and honest with each other that Jared would feel free to go when it was his time, and I would not have to live long term with unnecessary guilt or pain.
There was no notable final conversation, but Jared told me a great many times in those days, even when he was confused, that he loved me. He was very un-confused about that point.
Within that final week, in a moment when he was slightly agitated, he said, "I love you, Hannah Noel. I love you, Hannah Noel."
It seemed strange Jared would use my first name and surname in the same sentence, but he was saying it purposefully, urgently, as if he knew that his last battle would be against incoherence.
Like anything Jared ever communicated, to me or to the thousands of people who followed his writing or heard him speak in front of massive crowds, he wanted to be very clear. I think he knew that it would not be long before he was unable to say those words to me again.
