Our Brown-Eyed Girl

After reading my introduction page, you may have already done some simple calculations and realized that my daughter, Jarrah, was born well after my diagnosis. Despite the uncertainty surrounding my health, her conception was very deliberate and considered. Our decision was made with full awareness that our child will potentially lose their father in early life, perhaps early enough where they won’t even remember me. Yet we went ahead. In addition to various financial, social and emotional considerations, a hypothetical question that Nicole and I asked ourselves before attempting to conceive was, ‘If my dad had cancer at my birth and were to pass away while I was a child, would I still want to have been born?’ Both of us confidently answered ‘Yes’, so we moved forward and attempted to become pregnant.

Jarrah’s conception was a success story in assisted reproduction technology. In the same year that I was diagnosed with MF, my doctor advised me to start taking hydroxyurea – a mild form of oral chemotherapy that helped to slow my overactive blood production. A caveat of using this drug was that it had a reputation for causing mutations in sperm cells, which may then lead to defects in the developing embryo. Therefore, even though Nicole and I had no intention of starting a family at the time, I was advised to have some sperm cryopreserved before starting on hydroxyurea.

Four years later and we were ready to conceive. I was still taking hydroxyurea, so conceiving naturally was far too risky and clearly not an option. Instead, we entered the unsexy and expensive world of assisted reproduction. Unlike many other couples that struggle to conceive and require multiple rounds of costly intervention, we were very fortunate and became pregnant after only one round of the most basic form of intervention - intra-uterine insemination. Luckily, our experience of assisted reproduction was brief, but the financial cost, time commitment and emotional demands of this process left both of us feeling incredibly sympathetic to those people whose experiences are more prolonged. We wish them all the best.

Fast forward to the present day, two and half years after Jarrah’s birth, and both of us enthusiastically celebrate our decision to conceive. Jazzy is a wonderfully boisterous, cheeky, inquisitive and intelligent girl who is thriving in life. She is a gift and we can’t imagine life without her. It is a privilege to watch her progress and develop from a newborn into an infant, and now as a toddler. Life as her dad has been nothing short of brilliant.

But lurking in the background is a sad reality. Jarrah will be turning three in July and there is a serious risk that I will not be around to see that day, nor any of her subsequent birthdays. This was always part of the deal, a choice we consciously made. Sometimes I’ll be watching her play and become overwhelmed, suddenly bursting into tears from a wave of very intense, yet competing emotions. On one hand I’ll be watching my little girl climbing up stairs by herself, flying down backwards on the slide, or making “sandcastles” out of dirt, and I’ll be overcome with pure joy and pride. A little person who I held at birth not that long ago and helped nurse her through those defenseless early days, was now right here in front of me, flourishing and full of life. At the same time, I am reminding myself that this special time with my daughter is temporary. Her time as a newborn and as an infant is already gone, her life as a toddler is flying by just as quickly. These times will never be repeated. And the progress of my disease leaves me to wonder about how many more chapters of her life will I be around to experience. What other choice do I have but to try and cherish the times I have with her now? Disease or no disease, shouldn’t this be every parent’s goal anyway?

Of course, if I were to die, the impact would not be mine to endure. Nicole would be a single mum and Jarrah would be left without a dad. Aside from the obviously immense emotional turmoil that comes from losing a husband or dad, both their lives would also be disadvantaged on a practical level. In my younger days before diagnosis, I was not astute enough to take out life insurance and as a consequence, obtaining coverage for a pre-existing medical condition is now virtually impossible. My premature death and the permanent loss of my income would likely force Nicole to sell our house and relocate to a more affordable area. An early passing would also end our plans for another child. Nicole would never again experience the challenges and beauty of bearing and raising a newborn and Jarrah would never be gifted a sibling to play with.

Even though this sounds very gloomy, the chronic nature of MF has at least given us the time to consider and plan for these potential outcomes as best we can. Nicole has taken the time to consider her potential future circumstances and is wonderfully pragmatic and resourceful, we have put ourselves in a financial position that is secure enough to avoid a major catastrophe, and Jarrah has an amazing network of family and friends to support her upbringing. If either of us believed that Jarrah would be critically disadvantaged by these circumstances and was unable to live a long and fulfilling life, she would not have been conceived in the first place. Many other families affected by more acute forms of cancer may not be given the same luxury of time to contemplate and plan their future as carefully as we have. For other families, a stroke or heart attack in the middle of the night would leave them with no time. Our journey with MF has at least offered us some grace in this respect.

Of course, the tragic picture I have painted is the worst-case scenario of my illness and realistically, it only represent one of several potential outcomes for our family. It is just as likely that I will live a long and exciting life with my two girls. In fact, I often look to our future after a successful transplant and become giddy with excitement. Suddenly for the first time as a father, I will be cancer free and I will be able to show my daughter the world. Nicole and I can finally look deeper into our future with a more convincing sense of hope - the opportunities appear endless.

I remember my hematologist once said to me “My plan is for you to be around for your daughter’s 21st birthday.” Whatever transpires between then and now, I will always try to reflect on the impermanence of life and celebrate the time I have with Nicole and Jarrah. Nothing is guaranteed for anyone, except for the present moment.