Hugh’s Bravery Beads: Learnings from my son’s cancer journey
Five years ago my youngest son, Hugh, received a life-saving bone marrow transplant. This surgery came after seven months of intensive chemotherapy for an aggressive form of childhood cancer. Five years on and still in remission, our boy Hugh is a cancer survivor. His journey has been a life changing experience for my family and I. As I reflect on the miracle of being a parent to a cancer survivor, I reflect on what I have learned and how this experience has changed me both personally and professionally. Within these learnings lie some thoughts that may help others.
Suddenly switching gears
Our world was turned upside down when Hugh was diagnosed with a childhood cancer one week after his first birthday. Driving home from hospital still in a state of shock, I knew immediately that I needed to take time off work to care for Hugh. With two older sons at school, the plan quickly formed that my husband would focus on ensuring the older boys had as little disruption to their lives as possible. I would focus on supporting Hugh full-time in hospital through the biggest battle of his life. I recognise and appreciate how fortunate I was to be fully supported by KPMG in this decision. I ended up being off work for 10 months spending the majority of this time in hospital with Hugh. It was the longest period I have ever had out of the workforce.
Positive mindset challenged
I’ve always been a ‘glass half-full’ individual, who looks for the positive in any situation. However, this mindset was really challenged within the first few weeks of Hugh’s treatment. I remember vividly the first round of chemotherapy, which meant a 10-day stay in hospital. I entered the oncology ward with thinking that Hugh would beat cancer. He would come through his treatment without losing his hair, and surely he would never need a feeding tube.
So with a spring in my step and big smiles to the other parents, I was surprised to receive very little engagement in return. Two months later I was, in many ways, the very same mum. I found myself avoiding eye contact and not engaging in lengthy conversations with anyone outside of the medical staff. I had quickly realised that when you spend so much time in an oncology ward, things are not going well, and it’s very likely that someone else will have a story worse than yours. And so putting a barrier up around myself in order to survive and ensure I had the mental headspace to support Hugh became my key priority. At the same time it was an incredibly isolating experience. I started a journal to keep track of what was happening each day as an outlet for my emotions but also to capture the special moments and small milestones that kept hope alive through the rollercoaster of a cancer journey. That was something which helped me keep going for Hugh.
Work out what really matters
The experience of caring for and supporting Hugh has given me a renewed perspective on what really matters. For me, that is family, for which the greatest challenge is my career. Whilst I have always embraced work-life balance, I recognised during this journey that I needed to hard-wire a change in my approach so that I could more strongly achieve work-life balance. When I returned to work, I started having specific conversations with my two older boys (and now Hugh) about their commitments for the school term ahead. We agreed as a family what was important to the boys, and to us as parents, for us to attend and be part of. These family commitments would then be blocked as ‘Personal’ time blocks in my work calendar. Being a career professional, I believe in the adage ‘what gets measured gets managed’. Whilst setting a 100% goal is unrealistic in my line of work, I set myself a goal to attend >80% of what we have agreed is important. And I measure how I’ve gone at the end of each School Term. Whilst I don’t always achieve my goal, I am very aware of the choices I am making in prioritising my time so I can focus on what really matters.
Focus on the bigger picture
In caring for Hugh, I faced an ambiguous situation with no specific experience set to draw on. This meant I had to rely on my ability to ask good questions, listen to understand, and make sense of incoming information. Despite this approach, I was constantly frustrated at the lack of clarity on the pathway ahead. In hindsight, I am fairly sure this is part of the doctor’s training – to only give parents sufficient information for the most immediate part of the journey. Otherwise it could become too overwhelming. But what this meant for me was that I needed to focus on the bigger picture so that I could step beyond the day-to-day uncertainties.
Look beyond the obvious
One of the things that has really struck me since this life changing experience is the number of friends and colleagues, some of whom I have known for a very long time and some only briefly, who have shared with me their own very personal stories of challenges they have faced. This has reminded me to look beyond what might be merely outward appearance. This has encouraged me to keep sharing Hugh’s story and being open about my experience throughout. Translating this into my day to day work, it’s helped me recognise that as a leader in my business, creating an environment where all individuals are supported through their challenges starts by truly listening and understanding.
Never Give Up
Cancer treatment for children is brutal. In that fight, I think children give their parents an amazing gift – they teach us about what resilience and courage really mean. There were many times during Hugh’s treatment where the odds were stacked against him and yet somehow he found the strength to keep pulling through to fight another day. The symbol of bravery in this story are Hugh’s Bravery Beads. The first one measures over two metres with each bead representing a test, treatment or a good day. Hugh has another one of similar length that covers the eight week period in isolation leading up to, during and following the bone marrow transplant treatment. Every time I see or touch them, these beads are a tangible reminder that although a journey through hardship may be long, even so we must not give up.
The experience of caring for Hugh through his cancer treatment, and in the whole time since, has changed me as a person. There are things I wish I had never seen and there are things that will always remind me of the strength and bravery of children fighting serious health issues. These are memories that will stay with me always and they are now part of who I am today. But this is a story above all about hope, the importance of embracing each moment, and looking forward to the future with optimism. My purpose in reflecting on and sharing Hugh’s story has been to think deeply about what I have learned through this experience – and what I can share with others – and then take forward as I strive to be a better person both at home and at work.