Tasmanian toddler Eleanor Oakley is all smiles despite her cancer diagnosis
TWO-year-old Tasmanian Eleanor Oakley is fighting a deadly disease but an ever-present smile which belies her battle is proving an inspiration to her parents. FIND OUT HOW YOU CAN HELP
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TWO-year-old Tasmanian Eleanor Oakley is fighting a deadly disease but an ever-present smile which belies her battle is proving an inspiration to her parents.
Eleanor and parents Rob and Jacqui had their world turned upside down in January when Eleanor was diagnosed with neuroblastoma, a form of cancer which occurs most commonly in children under 5.
Mr and Mrs Oakley had to put their careers on hold as the family uprooted from Montagu Bay and moved to Melbourne for her to receive treatment at the Royal Children’s Hospital.
Mr Oakley said Eleanor had been “absolutely amazing” in the face of terrible hardship.
“She just inspires us every day,” Mr Oakley said.
“We’ve been in the system for nine months now … it’s really brutal, the treatment.
“In order to treat cancer, they have to throw everything at it.
“Eleanor ... goes into hospital with a big ear-to-ear smile, waving at the nurses as she’s going through.
“They absolutely love her, and it just brings a smile to our faces, knowing that she’s going through all this — I mean, how can we be so upset when she’s in some parts having a great time?”
HELP ELEANOR FIGHT NEUROBLASTOMA
Mr Oakley said Eleanor was just a normal child who loved “to do things that kids do”,
“I know she’s certainly had some really low times, but she just loves being around her family and loves playing,” he said.
“Unfortunately she hasn’t been able to do a lot of things that normal kids would do, but she still has fun.”
The ordeal started when Eleanor exhibited fever-like symptoms in early January.
Mr and Mrs Oakley were recommended by a doctor to go to the emergency department, which they ended up visiting four times over the course of a week.
“The last visit, we had some blood taken which showed a really low red blood cell count, and from there we had some further testing done, some ultrasound of the abdomen which showed a very large tumour in her right lower abdomen surrounding her right kidney,” Mr Oakley said.
“From there, the doctors did some further testing and it was discovered about 24 hours later that it was neuroblastoma.”
Mr Oakley said nothing could prepare him for the moment he was told the news.
“It was a parent’s worst nightmare, and you never think it’s going to happen to your child, and it’s just utter despair, really, for us as parents,” he said.
“You’re just really frightened, I suppose, frightened for their safety and frightened of what’s [to happen] next. We’re still living this nightmare now.”
The family moved to Melbourne following the diagnosis, and Eleanor had five rounds of induction chemotherapy at three-week intervals.
While the main tumour was around her right kidney, she had secondary tumours in her bone marrow, nasal area, and in spots on her spine.
Scans after the fourth round showed she was responding quite well to the treatment and the main tumour had shrunk enough to be operated on.
Eleanor had an eight-and-a-half hour surgery to remove her right kidney, while three cancerous lymph nodes around the kidney were also removed.
She then had a fifth round of induction chemotherapy.
“Following that, we then had what’s called a high dose chemotherapy [which is] designed to remove the bone marrow from your body and then we reinfused her own stem cells as part of that regime, which is designed to give the body a kickstart, rebuild the bone marrow essentially,” Mr Oakley said.
Eleanor developed some severe complications with her lungs from the high dose chemotherapy, and was admitted to ICU where she was on breathing life support for about eight days.
“She was pretty close to dying at that stage in ICU, so our biggest fear from that was that we weren’t quite sure if that was at the bottom, and if she was going to deteriorate further,” Mr Oakley said.
“Luckily, she didn’t deteriorate any further, and that was the bottom, and she slowly recovered over eight days.”
Once she was discharged from intensive care, Eleanor recovered well and was soon discharged from hospital to go back to the family’s Melbourne apartment.
Three days later she had a lung relapse, and spent her second birthday back in intensive care.
This time it wasn’t as severe, but she needed a lot of lung support because she couldn’t breath on her own.
It was two months before they could recommence radiotherapy at the Peter MacCallum Cancer Centre in Melbourne, and that treatment was recently completed.
She will soon undergo a number of tests.
“Ideally [we] want Eleanor to be cancer free, or most of the cancer has been killed so she can then progress to the next stage, which is immunotherapy, which we hopefully would start later this month,” Mr Oakley said.
“When you deal with the chemotherapy and all of these treatments it really knocks your immune system, so Eleanor’s almost had virtually zero immune system.”
Mr Oakley knows the fight won’t be over if Eleanor enters remission.
“It’s a really dangerous disease for kids, because they can be cured, but a lot of them do relapse in that first 12 months. From being a parent perspective, that’s our biggest fear,” he said.
Mr Oakley, a firefighter, said it had been hard for him and his wife, a teacher, to stop working and move to Melbourne, but there was simply no other option.
“You sort of lose your identity a little bit when you stop working and that sort of stuff, but for us we just want to be here by Eleanor, and that’s by far the most important thing,” he said.
A Go Fund Me page set up for the family had raised $65,000 of its $75,000 target as of last week.
Mr Oakley said the support they had received from friends, family, and the wider Tasmanian community had been “phenomenal”.
He said the family would love to return home.
“We’ll certainly get back to Tassie at the first available opportunity, but we won’t come back until Eleanor’s finished her treatment and hopefully we bring her back on the plane cancer-free,” Mr Oakley said.
The Go Fund Me page for Eleanor and her family can be found at gofundme.com/help-eleanor-fight-neuroblastoma.
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Originally published as Tasmanian toddler Eleanor Oakley is all smiles despite her cancer diagnosis