The story I’m sharing with you begins in 2011, when the middle of my three sons was diagnosed with Severe Aplastic Anaemia.
My husband and I were still working full time — my husband as a GP and myself as a nurse in an operating theatre of a busy private hospital.
Back then, our time was limited. Leisure trips were restricted to weekends and holidays. A trip to Canberra where our son lived involved return flights and expensive kennels for our two much-loved dogs.
With this in mind, we deliberated about taking a quick trip. But as it was his 28th birthday and it had been some time since we had seen him, we decided to go.
That decision probably saved our son’s life.
When we arrived, we noticed his ashen colour. When we questioned his general wellbeing, he replied that it was winter in Canberra and that he had been overseas and was probably just jetlagged.
He had previously made an appointment to see a doctor due to recurring colds but ended up seeing a nurse practitioner who diagnosed a viral infection and told him to rest.
Because he had rarely been ill, he didn’t have a local GP and the search began for a nearby practice that would accept him.
A blood test was organised that morning and we carried on our day, with plans to have lunch in the city. While walking into the city, my son’s phone rang and a concerned doctor told him he had received the test results and he was to go straight to hospital because he was seriously ill.
From that single phone call our life changed; it felt as if our world tilted on its axis.
We went straight to the Emergency Department where our son was admitted and his journey to recovery, and our steep learning curve, began.
He spent his 28th birthday receiving a series of blood transfusions while we supported his wife with their newborn baby.
A bone marrow biopsy delivered a diagnosis of Severe Aplastic Anaemia, a disease that as a student nurse in the 1970s when I trained was deemed almost a death sentence. Fortunately, advances in medicine have changed that.
We felt a desire to know the cause but after months of tests we were none wiser; it was thought to be an autoimmune cause but never confirmed.
With our encouragement, our son made the decision to undergo his treatment in Hobart so he and his family could receive our support. They moved in with us.
Because he was neutropenic and susceptible to infection, our dogs had to be temporarily removed; another trauma for me.
Family and friends rallied around, taking the dogs and the next shift in our world began. Words I had never heard of; blood components that I was unfamiliar with; and drugs that were a complete mystery to me came flooding into my world.
During his initial treatment we experienced a rollercoaster of emotions, ‘high highs’ and ‘low lows’. One of the lowest points was being told there was no compatible stem cell donor worldwide.
At the same time, our son’s inability to respond to the initial round of Anti-Thymocyte Globulin (ATG) was coupled with a flare-up of a preexisting Cytomegalovirus infection. I distinctly remember the numbing feeling of helplessness but also the need to stay strong.
At that stage my family was so fragile and I watched the strong people in my life crumble emotionally.
My daughter-in-law was one of the calmest influences. I never once heard her complain nor act any way other than being supportive. This helped me to stay strong.
I maintained my professional work, kept the house surgically clean, shopped for and cooked the healthiest food I could source. I researched dietary ‘superfoods’ like blueberries, manuka honey, organic fruits and vegetables and bought quality, lean grass-fed meat.
I discovered that watermelon was therapeutic for painful swollen gums, which was a side-effect of one of his medications. I tended to stay away from any processed, fatty foods and avoided as many food additives as possible.
Throughout his treatment I felt fortunate that my son was compliant with his treatment; researching and trying to understand his illness. The side effects of the drugs and invasive procedures, such as insertion of the Hickman catheter, seemed cruel for a young person to cope with. His pain became ours too.
I find it hard to explain how grateful I was to family and friends and how much awe I felt toward the incredible input of haematologists, radiologists, pharmacists, blood and plasma donors, drug researchers, and the wonderful nurses, all supplied by a world-class healthcare system without prejudice.
One occasion that stood out in my memory was the nurse who sat beside my son on a double shift while he received his ATG. Her expertise, calmness and humour at the perfect moments kept all of us afloat.
During his illness my son was fully supported by his employer and returned to Canberra nine months after his diagnosis. Ten years on from his diagnosis my son has recovered to a point where he leads a normal life without medication and goes most days without thinking of his illness.
For me, it was hard to believe that life would ever return to normal. Now, having experienced that life-changing journey, I can reflect on our gratitude and enjoy life again.