The cruelest disease
The Strength It Takes To Step
The day I was told that our son has cancer is a day that will never be forgotten. For us, this day was Sunday 28th January 2018 at approximately 1pm. I remember the word “leukaemia” so clearly like it was only yesterday. It was that word said, almost 12 months ago that shattered the life we had previously known, never to be the same again.
Lochlan was diagnosed with Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia Ph+ ALL. At the time we had no idea the enormity of what this diagnosis carried, nor did we realise how difficult the next 12 months would be.
Worry & Fear
It’s hard to wrap my head around that this time last year we first heard the words: “Your daughter has leukaemia”. This one sentence changed the course of our lives forever and whenever I am back at the Royal Children’s Hospital and see that stunned look on so many newly diagnosed parents’ faces that weight in my chest that I felt at the time brings a heaviness to my heart. It’s quite incredible how you quickly you adapt to this new reality – I guess what are the alternatives? – and how you become an expert in the care of your child. I wanted to, and needed to, know everything there was about Sienna’s cancer and understand her treatment plan and all the medical jargon that came with that! The one area I didn’t learn about through her doctors or supporting medical team, but was something innately important to what I could do to support her recovery, came as a result of the first child we encountered when we were admitted to the Kookaburra oncology ward.
As we step in to another big round of treatment, we are again faced with the uncertainty of what the future holds.
Over the past 4 weeks Lochie has had a break from chemotherapy and the result has been that we have been gifted 4 glorious weeks of “normality”.
Apart from 12 days of radiation therapy at Peter Mac which featured a sometime 2-hour return trip for a 5 minute treatment, Lochie has been at home and allowed to act like a normal child. No restrictions on where we go or what we do.
Home vs Hospital
We all inherently know that having meaningful personal relationships leads to us living much happier and more fulfilled lives, and I believe it is something that most of us do strive for on a daily basis – whether or not we succeed quite as often as that. But as I reflect on my previous corporate life, I realise that there was also nothing more important in my career than having cultivated these rich relationships with clients, suppliers and colleagues alike and I believe they were the biggest reason for the industry successes that I have had. Now I am at the intersect of both the professional and the personal with the establishment of Little Big Steps – a charity aiming to improve the health and wellbeing of kids living with cancer. This is as a result of a deeply personal journey catapulted by my own daughter and my co-founder’s son’s leukaemia journey, which has now become a not for profit business that we run.
Being A 'Mum' Is All I Have Control Of
In hindsight, being home was not what I had envisioned, it was better than being in hospital obviously, but it was hard, and stressful. I felt immense guilt because being home as a family of four was all I had hoped for, the previous 6 months.
But it was different, we had a critically ill son who we had to care for, administer vital drugs to and feed. We had come out of our safe bubble and the daily lives for all four of us could not have been any more different to pre January 2018.
The Balancing Act
Taking kids to school, going to work, & sitting down as a family for dinner were everyday life occurrences that I never really thought about until they stopped happening. I was oblivious to the quality of our wonderful life, tied up all too busy living it to enjoy it.
Now in hindsight … how I regret that!
When cancer enters your world; the life you once knew is no longer.
This has been a huge week for Little Big Steps with the official registration of us a charity with the Australian Charities and Not-for-Profits Commission (@ACNC.gov.au) - in the subtypes of Advancing Health and as a Health Promotion Charity - and approval by the ATO for our charitable tax concessions and Deductible Gift Recipient status. That's exhausting to say and really they are lots of fancy buzz words really to say that we are a bona fide charity - woo hoo!
But whilst we are celebrating this important milestone, Cass' 8 year old son Lochie - like so many other kids living with cancer around the country - have had to endure endless tests and parents' sleepless nights of uncertainty, with yet another unexplained fallout from the side effects of cancer treatment. This is the reality of living with cancer every day... and having to watch your child retreat into themselves is a gut wrenching thing to do when you feeling so helpless in the process.