A Zest for Life

My youngest daughter, Mia, was first diagnosed with cancer when she was two-and-a-half. It was Christmas Eve 2014. At a routine appointment, our local osteopath found a lump in Mia’s abdomen.

On 30 December, my husband, Marcus, and I attended the emergency department at The Royal Children’s Hospital with a healthy looking toddler and scans showing a large mass on her right kidney and a lesion on her left kidney. 

The following day, we were given the devastating news that Mia had bilateral Wilms’ tumour and an underlying pre-cancerous condition covering both of her kidneys. 

Wilms’ tumour is a type of kidney cancer which usually presents in one kidney. Its treatment includes the removal of the tumour together with the entire kidney, which reduces the risk of relapse. Unfortunately, as Mia’s disease presented on both kidneys, removal of a kidney was not an option.

Mia had surgery to insert her chemotherapy port and started treatment. As Mia’s oncologist explained her treatment plan, Marcus sat on the other side of the room holding our little girl with crazy long blonde hair. Silent tears streamed down his cheeks.

So what is it like to have a child diagnosed with cancer? It’s sudden. It’s unexpected. It’s like being dumped by a huge wave and not knowing which way is up. And it’s terrifying.

After six weeks of chemotherapy, Mia had surgery to attempt to remove the tumour. The surgery was complicated as the tumour was wrapped around her artery. Amazingly, the entire tumour was removed, meaning that Mia’s cancer was stage 1 and her treatment following surgery was less aggressive. 

Once Mia had recovered from surgery sufficiently, she recommenced treatment, which involved a further 13 weeks of chemotherapy. I asked her oncologist whether there was an age or a number of years after which she would no longer be at risk of developing another tumour. He looked me in the eye and he said, “She will always be at risk of developing another tumour.”

Because Mia’s disease presented on both kidneys, together with her underlying pre-cancerous condition, her risk of developing another tumour is high.

That awful proposition became a reality in June 2016.

Mia was 12 months off treatment when she relapsed. It was a week before her fourth birthday and her hair had just grown long enough to go back into pigtails. We were at the hospital for the results of Mia’s scans, holding our breath, hoping the news would be good. We were told that her cancer had returned, to both kidneys. 

Mia recommenced chemotherapy and underwent surgery to remove the tumours. This time the surgeons were unable to remove the tumours entirely, meaning there were still tumour cells in her body and her cancer was now stage 3. Her treatment following surgery was far more aggressive and required an additional and more toxic chemotherapy drug, a further 4 months of treatment and 6 days of radiation.

One of the drugs Mia has had is known to cause heart damage. Mia has already had so much that we have been told that by the time she is in her 30s, she will no longer have normal heart function.

Finally, on 30 December 2016, two years from when we first walked into the emergency department, Mia again finished treatment. It was a relief to hear Mia’s oncologist say: “These scans are good.” But then he looked me in the eye: “She’s still at risk,” he said.

Mia’s Beaded Journey, a program funded by the Children’s Cancer Foundation, tells the story of the treatment she has endured: three surgeries, 48 weeks of chemotherapy, six days of radiation and more blood tests, MRIs, CTs, X-rays, ultrasounds and ECHOs than I can recall.

Over our two-year journey, we’ve learnt about the extraordinary work of the Foundation. 

Marcus and I both raise awareness of the Children’s Cancer Foundation and the work they do in funding clinical trials and research because we know firsthand the importance of more targeted treatments with fewer side effects and how desperately underfunded this is. 

Once you have walked the corridors of a paediatric oncology ward, the experience will never leave you.

Today, Mia has a zest for life that is unparalleled. She is the first up each morning and has dressed herself in a crazy mismatch of colours and patterns and is ready for kinder before her sisters have finished their breakfast. It is as though every day she is saying, “Today’s here and I’m going to get into it.” 

There are no guarantees for Mia. We don’t know if, or when, she will develop another tumour. 

So we love hard, we live each day to the full, we hold our breath, we wait, and we hope that the next time we are at the hospital for results, her results are good.

Heather Richardson, mother of Mia

Photo credit: Mrs Smart Photography