The moments that stick

The moments that stick

What a mum can never forget about her three-year-old's diagnosis. 

The shock diagnosis had the family digging into reserves of emotional strength. This wasn’t the first time Dulcie’s health was in the balance. Nami shares her story.

“Before Dulcie was born we discovered she had autosomal recessive polycystic kidney disease, or ARPKD. It’s really rare. We were told our unborn baby girl might not survive as a newborn," said Nami.

The young mum from Croydon, Victoria, was induced at 36 weeks which was the maximum they’d let her go. Although Dulcie was a healthy weight and incredibly strong when she was born, her kidneys were very big which is a symptom of ARPKD.

It was a frightening time for the young parents, but at each check-up Dulcie proved healthier and stronger. Then, when Dulcie was two, she was cleared of all ill health.

“I remember it so clearly. I remember being told, ‘you have a perfectly healthy daughter’,” recalls Nami. “I had done so much work on steeling myself during those last weeks of pregnancy. We had tip-toed through each milestone. As happy as I was, it was hard knowing we’d been through all that seemingly for nothing.”

Not what it seems

Putting the past behind them, Nami and Andy forged ahead with their blissfully routine family life. Mannus, Dulcie’s big brother started school while days for Dulcie revolved around her friends at kindy, cooking with daddy, along with playing outside with the cats and chooks. 

When Dulcie was three, she started having bouts of vomiting, but it wasn’t gastro, she’d get car sick and sometimes complain about a sore head. 

“We started to scratch our heads. It was the new year and all these strange little things had been happening for a few months now,” recalls Nami.

It all came to a head during a play date at a park that autumn.

“Dulcie took a tumble and said she had sore tummy. I lifted up her shirt, but there was no graze, so I dusted her off and she went back to play,” said Nami.

“A little while later she came back to me and said she felt sick. I lifted up her top again and now I could see a lump coming out of the right hand side of her ribcage. It was too soft to be bone, so I knew it wasn’t a break. But it was too firm to be a swelling. I called my GP who suggested I go to the local hospital to get it checked properly. It was 11am,” Nami recalled.

After many hours of having scans and waiting, the doctor gave Nami an envelope containing all the results and told her to go immediately to The Royal Children’s Hospital in Melbourne. Dulcie’s right kidney didn’t look normal.

From the time she was admitted in the early evening, through to very late at night, Dulcie went through a barrage of tests. Both mum and daughter were physically and emotionally drained.

“It was midnight. I was introduced to an oncology specialist. I didn’t understand specifically what an oncologist did, but I knew it was important. He told me what was happening. My little girl had a Wilms tumour in her right kidney," said Nami.

"Immediately I felt, ‘here we go again’, ‘we’re back on that ride’. Our little world had imploded."

"I felt panic. It was a freight train moment inside my head. It felt really noisy, like I was in my own little storm," said Nami. "While I knew it was going to be really, really hard, I’d seen myself and my family brave that experience a few years earlier."

"My husband Andy is a rock. He was very supportive and reassuring. Our next focus was on Mannus. He was six and we wanted to get him to school the next day, to keep things normal for him as much as we could,” said Nami. 

Treatment plan

From there everything happened very quickly.

“Within four days of arrival in emergency Dulcie had started chemotherapy," said Nami.

"Her first chemo was awful. Even though numbing cream is put on the site they’re going to inject, there’s still pain. It was traumatic hearing her scream and watching her struggle."

"I knew we were giving it to her for her health, but she was feeling violated. And what we’re giving her is actually going to make her more sick than what she currently seems to be. Standing holding your child’s arms down while someone else does that is not a nice feeling. I remember speaking to a councilor about it because I felt I was lying to my child when I would say, ‘hush, it’s okay.’ It wasn’t okay. That was a lie."

"As adults, we know that the environment is safe. So rather than tell her ‘it’s okay’, because it absolutely wasn’t, I told Dulce she was safe. And I told her if she needed to scream, she could. It was my way of giving Dulcie some power and control back," said Nami.

They are the moments that stick. 

Ultimately, the best way to administer Dulcie’s chemotherapy would be through a surgically inserted port. Through sheer bad luck, Dulcie went through four of those ports during her treatment. She also had surgery to remove her right kidney, there was a post-op complication causing another trip to theatre.

In just eight months, little Dulcie had nine surgeries and 31 weeks of chemo.

After the storm

“Dulcie has always been bold and confident. She’s extroverted and loves an audience for her ballet concerts and songs she makes up. This experience hasn’t knocked that pluck out of her," said Nami.

"While I’m a very practical person, I do wonder if somehow Dulcie knew that life wasn’t going to be easy for her, because from the moment she came into the world, she was loud and brash and funny.  She would tell nurses if she wasn’t happy! I’ve raised my kids to be polite and to respect adults, but being able to speak her mind has allowed Dulcie to cope."

"Dulcie’s got a posse of lovely girl friends from kindy. Seeing her go back there this year is a definite highlight. It was amazing. And it caught me by surprise. Her day care had been so supportive toward us right throughout the experience. But something about being able to walk back in there, and to see them all so excited to see Dulcie was really overwhelming," said Nami.

Kids miss out on a lot when they’re stuck in hospital. Swimming lessons was one of the moments that made Nami realise how far they'd come. 

"You’ve got to understand, taking the kids to swimming used to feel like a real chore," she said. "So much to pack, so much stuff to carry, the drama of trying to get there on time every week, the battle in the change-room at the end. Now I feel lucky I can take Dulcie and Mannus to swimming lessons.”

And after all those months of getting carsick, Dulcie never gets carsick now.

Professor Glenn Marshall AM, Senior Oncologist at the Kids Cancer Centre at Sydney Children’s Hospital, Randwick and Head of Translational Research at Children’s Cancer Institute, is quoted about Zero Childhood Cancer, a national personalised medicine program to improve treatment and minimise the side-effects and suffering caused by chemotherapy.

“Our ward is full of children suffering as much from the side effects of treatment as they are suffering from cancer. The data we will be gathering and using is exciting in two respects – we will have evidence-based treatment options in the present, and we will be building a powerful research repository for the future.”