Real life: “What I learnt when my 4yo daughter was diagnosed with leukaemia”
“When your daughter is diagnosed with leukaemia, you can’t help but appreciate the ordinary.”
One thing you should know about me is that I was an ordinary person, living an ordinary life. Perhaps just like you right now.
And ordinary is the greatest gift you could ask for when your world is turned upside down with these four words:
Your daughter has leukaemia.
I was tempted to turn around, thinking those words were meant for someone else.
Is this doctor talking to me? Is she talking about my daughter?
And just like that, my ordinary life was taken away from me and I was handed a new one. An unchosen path paved with insurmountable fear and unknown territory.
Things like this happened to “other people” yet here it was, happening to me.
And why not me? I am a person, just like everyone else and on the 18th February 2021, I happened to be the recipient of this terrible thing.
Raya, my four-year-old daughter had been sick with unexplained fevers frequently for about a year before her diagnosis of Acute Lymphoblastic Leukaemia. I suspected her immune system was weak, but I never expected to hear the word cancer and your daughter in the same sentence.
One thing I can tell you is that despite my agonising fear and my inability to think clearly, I discovered my innate superpower to wear a mask of bravery for my little girl. I couldn’t see further than the day that was before me and the value of this very moment was omnipresent.
Raya’s treatment began immediately and I vigilantly watched my daughter turn into a science experiment. After five months of chemotherapy, Raya still had cancer. I was told she was a slow-responder and she could not be cured through chemotherapy alone. With leukaemia still present in her bone marrow, the only possibly cure for her was a bone-marrow transplant.
The most agonising part of this was that the transplant was not a miracle cure. There was a 50/50 probability that the transplant may not work and Raya could still have cancer even after this highly specialised and life-threatening treatment.
If Raya came out of transplant with leukaemia cells detected in her body, we were advised that we would go home, make memories and prepare to say goodbye to our precious little girl.
Even as I write these words, I struggle to comprehend how I made it through those meetings discussing my daughter as a statistic and her possible imminent death.
We made it through Raya’s bone marrow transplant where she was confined to her hospital room for two months, receiving treatment, blood transfusions and was carefully monitored after receiving her new bone marrow – a gift from her father.
Would my husband’s gift be enough to save our daughter’s life?
Two months after transplant, Raya had her first bone marrow biopsy to see if the transplant was successful. After seven months of holding my breath during her treatment, I was told Raya’s bone marrow was clear of cancer, and I understood what it was like to breathe out again.
Raya was not given the all-clear. I was told that, statistically, she was highly likely to relapse. The two years after the transplant consisted of bi-monthly biopsies to ensure her cancer did not return. In August 2023, Raya beat all odds and remained cancer-free for two years – which marked a significant milestone in considering her cured of leukaemia.
Raya’s treatment involved chemotherapy, blood transfusions, general anaesthetics, radiation and many nights in hospital ,and today she is a seemingly ordinary seven-year-old girl who goes to school, dance classes, swimming lessons and loves to draw and write stories. Did I tell you how much I love ordinary?
This was the life I tried to envision for my daughter when she was undergoing treatment and the odds of survival was against her.
It was difficult getting through Raya’s treatment and unexpectedly it took some time to adjust back to ordinary life when she completed treatment. I took time to process all that happened by writing a memoir not only as a way to help heal my own pain, but more importantly I wanted to give Raya the gift of knowing her own story someday when she is a young woman with many questions that her then four year old self would not have asked or even understood.
The thing about ordinary is that it really isn’t ordinary. There is nothing ordinary about waking up each morning, breathing with our two lungs and having a heart that beats life into our body.
There is nothing ordinary about the planet we live on that spins on its axis and gives us the gift of day and night.
There is nothing ordinary about the gift of each day that is waiting to be opened and fully experienced through the human mind, body and heart.
The thing about life is that there is also death. One thing we know for sure is that we will all die. When? I am not sure. How? I don’t know.
What I do know is that if we remember we will die, we will remember how to live and how to live fully.
When life strikes us with a crisis like I was when my daughter was diagnosed with cancer; the thing you crave most is an ordinary life.
My daughter had a second chance of life because of my husband’s bone marrow. He was a 50% match for her. We had no other donors in all of Australia and only one potential donor match overseas. Without a bone marrow match, Raya’s life could not have been saved.
Australia is in urgent need of recruiting more donors on the Bone Marrow Registry. Australia has one of the highest rates of performing blood stem cell transplants globally, yet patients are increasingly dependent on overseas donors.
If you are between 18-35 years of age, click here to obtain your free cheek swab kit and you can be added to the registry. You could be the cure for someone else. Now that is indeed extraordinary!
This year, on July 28 I have decided to tackle the 10K fun run at the Real Insurance Sydney Harbour 10&5K. The event will be raising funds for the Australian Cancer Research Foundation which has been funding cancer research for the past 40 years.
You can be the cure – click here to get yourself on the Australian Bone Marrow Donor Registry. More people. More matches. More hope.
