It’s every parent’s worst nightmare to learn their child has cancer, one Naomi and Hannes Holly wish they could wake from.
On 2nd February 2016, the lives of Naomi and Hannes Holly were thrown into turmoil, when tests revealed a malignant tumour strangling their eight-month-old daughter’s spine. No-one can confirm if it existed at birth, or pinpoint when it first appeared. All Naomi knows is, she wants it gone.
Nora, who the couple affectionately call, their ‘Ginger Ninja’, is little sister to two energetic brothers: Jonte (6) and Johnas (4). Naomi recalls all three pregnancies and births as unremarkable, with the exception of feeling nauseous whenever she consumed anything sugary, while pregnant with Nora.
Naomi proudly claims her little ‘Pocket Rocket’ was crawling, pulling up and using push-toys at seven months.
“She was actually quite ahead of all her milestones,” Naomi recounts.
Three days prior to their life-changing diagnosis, Naomi placed her grizzly baby down for a nap, thinking she was teething. When Nora woke, Naomi noticed her legs weren’t kicking. She placed her baby at the coffee table and Nora’s legs buckled beneath her.
“She was just gripping onto the table,” she says. “She wasn’t doing any weight-bearing at all.” Naomi said Nora’s sudden inability to move her lower limbs was as if a switch had been flicked.
“I want Nora’s story to be told so parents feel they can question doctors, nurses, anyone, regarding their children. Especially first time mums.”
An initial consultation at their local hospital resulted in a doctor deciding Nora’s condition was ‘behavioural’, which Naomi says, she refused to accept. Blood tests and x-rays of Nora’s legs and hips were then arranged. “That’s when they said there might be something suspicious in her right leg, probably a toddler fracture.”
A plaster cast was fitted to only one leg which unsettled Naomi as she suspected Nora’s issues involved both limbs. Her uneasiness escalated when she witnessed her baby’s condition worsening. She says when Nora struggled to sit, she feared the problem could be spinal and expressed her doubts, “What happens if she ends up being paralysed or her organs stop working?” It appeared to her as though something was creeping up Nora’s body.
The concerned parents deliberated over driving to the specialist hospital for children, but chose to wait until Monday. Naomi thought the weight of the plaster cast might have hindered any improvement but, “Come Monday morning, she was like a little rag doll”.
“[I want] to make it a really special one because you don’t know if it’s the first of many or her …” Naomi stops as she cannot bring herself to say ‘last’
Now really worried, Naomi raced Nora to the children’s hospital where staff removed the cast because, she was told, there was actually no evidence of a fracture. Unfortunately, multiple scans booked for the morning following Nora’s admittance uncovered something far more sinister.
Naomi’s eyes fill with tears when she recalls the moment doctors mentioned neuroblastoma, a rare type of cancer consisting of specialised nerve cells, which commonly affects infants. A large tumour spanned the length of Nora’s spine from her T1 vertebrae to her T8, pinching her spinal cord to 85 per cent, causing the loss of mobility.
“A bit of disbelief [and] a lot of grief,” is how Naomi describes her feelings after the diagnosis. During five hours under general anaesthetic, Nora underwent an MRI, CT scan, biopsy and lumbar puncture. “Hard day,” Naomi whispers, “A day I won’t ever forget, that’s for sure.”
Emergency chemotherapy and steroids were administered that Tuesday. “We didn’t know how long her spinal cord had been crushed for or what permanent damage had been done. We still didn’t know if she would ever walk again.”
Nora endured three days of chemotherapy and gradually regained strength. “She made progress every single day. You could see her getting stronger and stronger, that’s just her spirit.”
“Parents know their children the best, so keep asking until you are happy. Don’t ever feel silly for asking. Follow your instincts.”
Coming to terms with the enormity of their situation, Naomi says, “It was hard. My first reaction was like, how am I going to juggle this? How am I going to be there for my boys and my husband as well? I felt really disjointed from what was going on in their lives. As much as family time was important before, it’s just got a completely new depth.” She credits her “awesome support network” for helping her and Hannes get through some tough days.
The anxious parents waited two weeks for test results that would clarify if the cancer had spread to Nora’s bones and if the MYCN amplification gene was present, which indicates a more aggressive tumour. Those tests returned negative but Naomi explains an MIBG test, where nuclear dye is injected, showed several smaller ‘satellite’ tumours.
The initial chemotherapy was followed by further rounds every three weeks. After every second round Nora had an MRI and MIBG to monitor her progress. Naomi says the tumour shrunk 36 per cent after the first two rounds, but with no significant changes since then the doctors opted to operate. Surgery was booked for May 6 but Nora’s immune system completely crashed and she developed a rash requiring a week in hospital on antibiotics.
On Friday 13, three and a half months after diagnosis, doctors performed open surgery. Naomi says they completely detached the tumour from Nora’s spine, removing 90 per cent of it, although a tiny amount remains attached to her aorta.
Three days later, Nora was weight-bearing and walking around her hospital cot. Now back at home, she is crawling and furniture-walking as if nothing happened. Her gorgeous smile and lively demeanour belie the internal battle raging within her tiny body, making it difficult to understand how her prognosis could be anything but positive.
Taking a deep breath, Naomi wipes away tears and says it’s a matter of “wait and see” to gauge the tumour’s response to treatment.
“They’ve given her a 70 per cent chance of survival. She will probably be having tests every three months just to monitor it and make sure it doesn’t come back, or it doesn’t grow somewhere else. For the next five years, and probably for the rest of her life, we’ll be on edge.”
Naomi is aware that even if children survive this cancer, it’s possible they may not survive the side effects of treatment, which is why she hopes radiation is unnecessary and chemotherapy is limited.
She admits to feeling angry towards the original doctors. She believes if the plaster cast had remained on, Nora might have been at risk of becoming paralysed, as essential treatment would have been delayed.
“I wish to see her grow into a beautiful woman”.
According to Neuroblastoma Australia; as the disease is so rare with symptoms that can be vague and mimic other illnesses, making a diagnosis can prove difficult. On behalf of the local hospital which diagnosed Nora with a leg fracture, Dr Lachlan Henderson stated that their staff, “undertook investigations based on the clinical presentation” of Nora, and had consulted with the children’s hospital regarding treatment. The Hollys were also advised to return if Nora’s condition deteriorated.
It will be Nora’s first birthday soon. “[I want] to make it a really special one because you don’t know if it’s the first of many or her …” Naomi stops as she cannot bring herself to say ‘last’. Tears flow freely and almost inaudibly, she shares her hope for Nora’s future, “I wish to see her grow into a beautiful woman”.
Naomi dries her eyes and adds, “I want Nora’s story to be told so parents feel they can question doctors, nurses, anyone, regarding their children. Especially first time mums. Parents know their children the best, so keep asking until you are happy. Don’t ever feel silly for asking. Follow your instincts.”
If you wish to help the Holly family, please donate to www.mycause.com.au/payment/frp_donation/118476