Adelaide family prepares for cancer-stricken daughter’s neuroblastoma clinical trial in Spain
A young Adelaide girl and her family are preparing to fly to Europe in a final bid to save her life after her cancer returned.
Sophie Stephenson was first diagnosed with Stage Four Neuroblastoma at just 19 months old in March 2019, following a visit to her GP.
Since then, the now three-year-old has battled through more than eight rounds of chemotherapy, radiation and surgery.
The treatment proved successful and Sophie went into remission.
But during a three-month check-up in December, doctors discovered the cancer had relapsed in her brain.
“It was just like being thrown into another world really,” Sophie’s mum Brooke told 7NEWS.com.au of the initial diagnosis.
“We were just so shocked and I think cried for weeks.
“We went through the experiences of sadness and anger and then we just got on with it.”
As a last bid to save her life, the family is now preparing to fly to Spain for a clinical trial that’s hoped will eradicate the cancer.
“If we stay here, she’s got less than a five per cent chance of making it through the next six months,” Brooke said.
“After that, they put her on palliative care.
“Whereas if we go over there, we’ve got at least a 50 per cent chance.”
In preparation for the treatment in Barcelona, Sophie has had a port put in her brain.
When she gets overseas, she will be injected with a radioactive immunotherapy.
“So it’s radiation and immunotherapy combined in a drug and it’s injected into the port that they put in her brain,” Brooke said.
“Then that will travel around to her central nervous system and then kill the remaining neuroblastoma cells that are hiding in her brain and spinal cord that could turn into tumours.
The treatment is expected to take about 10 weeks in total, but it all depends on how Sophie responds to the treatment.
While getting overseas and then back home won’t be easy for the family during the COVID pandemic, they’ve also been warned to be careful.
“We spoke to other families that are doing the same thing at the moment… They’ve been very reassuring to us.
“You just be really careful. You don’t go anywhere. You wear your mask all the time.
“It does make it harder because we’ve got two young girls who we need to isolate from people for three possibly more months.
“Then our biggest fear is getting back into the country.”
‘Most stressful thing’
For Brooke, seeing her youngest daughter go through treatment has taken its toll.
“It’s the most stressful thing anybody could ever go through,” she said.
“To see your child going through hell and not being able to fix it for them… it’s been really difficult.
“I wouldn’t wish it on my worst enemy.
“But it’s made us grow stronger as a family. It’s taught us to value life.
As for little Sophie – she has taken it all in her stride.
“She’s such a chilled out kid,” Brooke said.
“She’s happy. She loves her babies. Every time you see her, she’ll have a doll with her. She’s happy just doing the simple things.”
More awareness needed
The family launched a GoFundMe page during Sophie’s first diagnosis.
They also want more awareness about neuroblastoma and the chance for clinical trials to take place in Australia.
“We’d love more treatment options in Australia for these kids or at least we’d love the government to have some kind of funding for drugs that these kids need to go overseas to get,” Brooke said.
“We wish there was more to help these families because some families don’t have the resources to do this and their children end up passing away because they can’t get their kid to the other side of the world.
“I think Sophie’s received the best treatment she can in Australia.
“But for relapse, we don’t have the best treatments here if the kid’s cancer comes back.
“A lot of children will end up in palliative care so we’d love to see that change.”