A Wilms tumour diagnosis at Christmas time

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

5 days later on 30 December, my husband Marcus and I attended the emergency department at The Royal Children’s Hospital carrying a healthy-looking toddler and scans that revealed a large mass on her right kidney and a lesion on her left kidney.

The next day, we received 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 in children, usually presenting in one kidney. Treatment includes the removal of the tumour along with the entire kidney, to reduce the risk of relapse. Unfortunately, as Mia’s disease presented on both kidneys, removal of a kidney was not an option. Instead, Mia had surgery to insert a chemotherapy port and begin treatment.

A world turned upside down

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 underwent surgery for the removal of her tumour. Surgery was complicated. The tumour was wrapped around her artery. Amazingly, the entire tumour was removed; an indicator that Mia’s cancer was stage 1 and her treatment following surgery would be less aggressive.

After recovering from her initial surgery, Mia recommenced treatment, which involved a further 13 weeks of chemotherapy. I asked her oncologist directly whether there was an age or a number of years that Mia 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.”

“She will always be at risk of developing another tumour.”

– Heather, Mia’s Mum

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

Battling stage 3 tumours with toxic chemicals

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 to receive the results of Mia’s scans. We held our breath, hoping the news would be good. Heartbreakingly 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, which meant tumour cells remained in her little body and her cancer was stage 3. The next round of treatment after surgery was far more aggressive and involved a more toxic chemotherapy drug, that would be administered for another 4 months of treatment, together with 6 days of radiation.

One of the drugs Mia was treated with is known to cause heart damage. We were told that the dose Mia needed would affect her normal heart function by the time she was 30.

On 30 December 2016, two years after we first walked into the emergency department and another New Year on the horizon, Mia again finished treatment. It was a relief to hear Mia’s oncologist say: “These scans are good.” But looking at me he said: “But, she’s still remains at risk,”

An experience that never leaves you

Soon after Mia’s diagnosis, we learnt about the extraordinary work of the Children’s Cancer Foundation.

Marcus and I both continue to help raise awareness of 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.

– Heather, Mia’s mum

Mia’s Beaded Journey, was another program funded by the Foundation. It tells the story and marks the milestones of every 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.

Today, Mia has a zest for life that is unparalleled. She is the first in the family to get up each morning and is ready for school 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.”

Thank you to Heather for sharing her story with us.

Photo credit: Mrs Smart Photography

(This story was originally published online in 2017. This version published with permission)