Sammy's story
2023-05-02
Travelling to the US during a pandemic seems reckless – but not if the science your child needs isn’t available at home. Kristy Colakidis shares with us her family’s tough decision.
When five-year-old Sammy gets on a plane for the US, something she does every few months, she’s got her best outfits packed. Her mum, Kristy explains with a laugh:
Well, there has to be stockings and a dress for the hospital visit! She does it in style.
Why would a parent take their child to the US again and again in the middle of a pandemic? It’s a question Kristy and Steven Colakidis have asked themselves many times over the past year, and still ask themselves. And the answer always comes back the same: to give Sammy the best chance of living.
We have weighed up every factor and it’s worth it. But I wish that we didn’t have to.
Sammy was diagnosed with stage 4 neuroblastoma in June 2019, at the age of three. She began travelling to the US from Melbourne in October last year to take part in a two-year clinical trial of a maintenance drug.
Neuroblastoma is a solid tumour cancer that can occur anywhere along a child’s sympathetic nervous system. About 40 kids are diagnosed with this cancer in Australia every year.
For Sammy’s aggressive type of neuroblastoma, the survival rate is around 50 percent because relapses are very common and harder to treat. Kristy explains:
Our hope in doing this clinical trial is to prevent Sammy having a relapse. We have to go across the world to do this, because Australia doesn’t have access to this trial.
From devastation to hope
Before getting sick, Sammy was known for her smile that would light up the room.
She just had this cheery sweetness to her.
Then for 12 months, she endured cancer treatment that can only be described as harrowing: five rounds of chemotherapy, a tumour resection surgery, a double stem cell transplant, radiotherapy then six rounds of immunotherapy.
Sammy survived it all, along with countless infections, kidney damage and even a collapsed lung. Amazingly, she came out cancer-free. But it changed her, says Kristy.
Our team at the Royal Children’s Hospital were amazing, but going through all that affects a kid’s personality. There’s pain, anxiety, anger and a loss of trust.
- Kristy Colakidis
Thankfully, Sammy adapted:
She’s now sassy and tough. I’d say she’s more resilient than many adults.
As she supported Sammy through her treatment, Kristy was also doing her own research. When she read about a maintenance drug in the US that showed promise in reducing relapses as well as having very little side effects, she felt it was the best option for her daughter.
So, she pursued it with a parent’s dogged determination. Kristy recounts:
I had to be persistent. Making calls, asking questions, doing everything I could.
Driving her was the knowledge that although Sammy’s cancer had disappeared, it could return anytime.
Successful frontline treatment doesn’t always mean a permanent cure.
- Kristy Colakidis
A family put to the test
Sammy is just one of four daughters in the Colakidis family – there’s also twin sister Alexandra and older sisters Georgia, 6, and Charlotte, 8. From the looks of their family photos, they’re a family that enjoys life no matter what. Kristy says proudly:
There’s never a dull moment in our house, my girls are not quiet. They’re out to change the world.
The decision to go to the US (which involves seven trips over two years) means a lot of planning and sacrifice to arrange flights, accommodation, and quarantine.
There’s also the physical separation. Sammy and mum Kristy are effectively spending a third of their lives away from home, because of COVID-19 quarantining rules both here and in the US.
And there is also the very real chance of contracting COVID-19 while travelling, Kristy admits:
It’s hard, we’re definitely stretched, but we’re also figuring it out. The kids are encouraged to talk about their feelings. We do lots of video chats when we’re away, particularly between Ally and Sammy, so they still have their twin connection.
Science desperately needed
Kristy is willing to take Sammy around the world for a reason that no-one could argue with - to give her a greater chance of survival. The fact this opportunity isn’t available closer to home is something The Kids’ Cancer Project wants to change.
The truth is that more clinical trials are available in the US. I wish we could access this science here.
While there are signs of progress in local research – such as the work done by Professor Michelle Haber that’s funded by The Kids’ Cancer Project – more funding is desperately needed now to link Australia up with international research for all types of childhood cancer.
Kristy hopes that in the future, no other family has to make the difficult choices that her family has made.
I don’t want any other family to go through this.
- Kristy Colakidis
Images: Alan Moyle, Photobat.