The cancer was found in the epidural space running alongside Dasha’s spinal cord, invading her chest cavity directly behind her stomach and heart. The tumour was wrapped around her aorta and attached to her oesophagus.
Dasha's mother, Sheyne, had developed a career helping families with babies in discomfort and distress. She was even known as ‘The Baby Whisperer’ in some circles. It was all preparation for her toughest challenge. Here Sheyne shares the story how she, along with husband Diago, confronted the devestating diagnosis.
I found out I was pregnant when I had an ultrasound which discovered 11 fibroids, or tumours, growing rapidly within my urethral wall. Eight weeks into the pregnancy, I couldn’t move. At 17 weeks, I was admitted to hospital and basically stayed there till 39 weeks, when Dasha was born. By the time Dasha arrived, she was considered a miracle.
Dasha had a sinus infection and reflux from 10 days old, and by nine months, she was still very sick, but we didn’t really know why she wasn’t getting better.
As doctors were running tests, the clinic sister sat me down and ask me if I was anxious, and before I knew it I was telling her that I couldn’t get it out of my head that one day my baby would die. I felt like Dasha was slipping away. I spent my whole career knowing what babies needed to get better, but for the first time I had no idea and it was all out of my control.
We got a little bit of respite when Dasha was between nine and 12 months old. But then the inflammation came on intensely. She became increasingly sick, more and more each week. She slowly stopped being able to go for walks with us. We would be walking with her and suddenly she’d drop down to the ground and lie on her stomach, complaining of intense tummy pain. Sleep got worse and worse for Dasha, and us, because of all her pain.
On Mother’s Day, around Dasha’s second birthday, she had a massive fever, so I took her to the doctor. I was at the end of my tether as this was one of countless dread-filled and worried trips to the doctor. I was told it was just a virus, I wasn’t convinced, but didn’t know what else to do.
I managed to get Dasha back into the car, even though she was sore, uncomfortable and upset. Then five minutes into the drive, Dasha was struck with the most agonising pain a little girl could have, and let out a scream like I hadn’t heard before. In my job, I’ve seen babies in distress, but I’ve never seen a child in this much sheer pain. I rushed straight to the hospital in a panic.
My poor little girl was still screaming in pain. Dr Savinch overhead my distressed conversation with a doctor, instantly knew something was wrong and took action. Then a team took Dasha in for scans and worked for hours and hours, searching for a cure. Dr Savinch saved my baby’s life that day.
After a long, agonising wait, the specialist finally called and said that we needed to come see him straight away. We walked in and saw his face, it said it all. He then told us that they had found a very large tumour on our daughter’s spine, and that it was crushing her spinal cord.
We were devastated. Diego, who normally doesn’t show too much emotion, pulled his jacket over his head, and slipped off the chair onto the floor.
Fortunately, the doctors and the nurses and support services just took over without overwhelming us too much more, and left us to love her well and support her through that first step in her treatment. Our whole family was there, I couldn’t figure out how they had all got there before I did, but one by one they came into the Intensive Care Unit dazed, shocked, devastated and frightened, but as determined to fight for Dasha as we were.
Then and there she started chemotherapy. It was very overwhelming and my heart was breaking. My arms were aching and unbearably empty, because she had spent so long in theatre after being taken in for a seemingly simple scan that changed our lives forever.
Thanks to nurses, doctors, surgeons, specialists, researchers, family, friends and generous supporters, Dasha is now almost five, and the tumour is stable, not aggressive and has not spread.
Ten years before the diagnosis, the cancer Dasha had was deemed incurable. Research and the support committed to it has saved my daughter’s life.
Over the last two years Dasha has gone from strength to strength, her hair is incredible, almost down to her bottom despite two haircuts! It’s shiny, thick and glossy. I love brushing it, and we have the largest hair accessory collection in the known universe.
From the bottom of our hearts, thank you to all those who have gone before us. I now join the army of supporters who hope that in ten years, current forms of cancer that have an extremely poor prognosis right now can be curable as well.
We feel like the luckiest parents on the planet. We feel as though she is cured, and so do her doctors and oncologists. Our life is beautiful, we still live every day like it is our last and we do the loveliest things and have the most amazing adventures.
The science supported by The Kids' Cancer Project is saving lives
Through the generosity of the community, The Kids' Cancer Project has been able to extend financial commitment to research by co-funding three projects through the Cancer Australia Priority-driven Collaborative Cancer Research Scheme, investing almost $1.8 million over a three-year period.
This financial year, the charity increased the number of research projects supported by 80 per cent.
"We are committed to supporting research projects that will have the greatest impact on childhood cancer treatment and survival," said Owen Finegan, the charity's CEO.
"The three research programs being co-funded by The Kids’ Cancer Project are in the areas of acute lymphoblastic leukaemia, diffuse intrinsic pontine gliomas and neuroblastoma," he said.
Neuroblastoma is the most common solid cancer in infants. In one of the newly funded projects, Dr Daniel Carter and his team at the Children’s Cancer Institute
have identified, for the first time, a potential, novel therapeutic target in the highly malignant neuroblastoma.
Read more: Targeting FACT to inhibit MYCN-driven transcription.
Dr Dan Carter wants to find kinder more effective treatments for neuroblastoma.
“We hope to develop a new drug which is not only more effective in killing the cancer itself, but has greatly decreased sides effects compared to current chemotherapies," said Dr Carter. "We hope that one day our drug can cure children with neuroblastoma and we can beat this terrible disease.”
Donate to research and help find more effective treatments for kids with cancer.