How do you react when a doctor tells you your three-day-old son is not likely to live to see his first birthday?
You cry a lot, says Jenny, a nurse from the NSW south coast who faced this situation just over 12 months ago. You feel as if somebody has slammed their fist into your chest and torn your heart out. You worry deeply for the emotional wellbeing of your other children, who will lose their baby brother. You even go as far as thinking about who might be invited to the funeral.
"You worry deeply about the emotional wellbeing of your other children." Jenny and Peter take time to have a 'normal' family outing at the beach.
“A new mother should be worrying about nappies and breastfeeding and sleep patterns and settling,” she says. “No new mother should ever have to worry about whether their baby is going to live or die.”
A long, medical journey
Baby Activity Bear keeps a close watch over Eli in hospital.
Baby Eli had breathing issues from the day he was born. During tracheostomy surgery to place a tube into his windpipe to assist his breathing, surgeons discovered a tumour as large as an adult’s thumb. Tests revealed it was neuroblastoma, a cancer typically found in children aged five and under. Jenny and husband Peter, a policeman, faced a terrible choice.
“The choices were surgery, chemo, or do nothing,” Peter explains. “Surgery would remove the tumour, which had been caught very early so hadn’t spread. Chemo might reduce the size of the tumour but would have long-lasting effects on his health. And doing nothing would just be a wait-and-see option.”
The obvious choice was surgery, then the specialists told Jenny and Peter the tumour was sitting against Eli’s carotid artery. This meant surgery carried a very real risk of death.
“That was not acceptable for us,” Peter says. “A risk factor involving death is never acceptable. It was never an option for us. So, we chose chemotherapy.”
The first round of chemo had no effect, but the second round reduced the tumour to the size of a jelly bean. While that part of the therapy was a success, as with most children, Eli reacted badly to the chemo.
“He was absolutely miserable and needed to be held all the time,” Peter says.
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“He had ulcers all the way through his digestive tract, which turned him off food,” Jenny says. “He is still fed, to this day, via a tube into his tummy.”
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When his tracheostomy tube was removed for the first time a few months ago, Eli’s breathing declined over a few hours. He ended up in emergency surgery to save his life.
Science is life
“We owe his life to medical science,” Jenny says. “In regard to the tracheostomy and the chemo, without that he would have died. If he wasn't resuscitated at birth, he would have died. When he was three days old, we were told he was unlikely to survive, and over a year later he’s going strong.”
“I always think if he was born in a different place or a different time, he wouldn’t have survived. He’s alive today because of medical science.”
However, Eli is not out of the woods. While his tumour has not begun to grow again, it has also not shrunk or disappeared completely. He’s still breathing and eating through tubes.
If only the science existed to better treat neuroblastoma, little Eli’s condition, and his parents’ and siblings’ struggles, could be solved.
Hanging out with mum.
The Kids’ Cancer Project is funding several exciting studies into new, more targeted and less damaging therapies for neuroblastoma. These include Professor Michelle Haber’s polyamine depletion research for children with high-risk neuroblastomas, Dr Andrew Care’s protein nanocage development for targeted therapy against neuroblastoma, and Associate Professor Alexander Swarbrick’s work around MicroRNAs to kill neuroblastoma cells.
Read more: Our research projects
They could all, one day, be part of a solution that means children like Eli can be treated, and their cancer cured, with greater confidence, less suffering and no long-term negative effects.
“Right now, I feel relieved that the cancer is less of a threat,” Jenny says. “Of course, I still worry every time that it’s going to come back. I naturally expect the worst during every scan and get really anxious. But I’ve been trying to put the cancer to the back of my mind and concentrate instead on getting to a stage where the trachie can be removed.”
“We don’t know what’s in his future, but we have our hopes and dreams,” Peter says. “I guess my biggest fear is that it comes back with full force. Jenny had a cousin who had neuroblastoma. He went into remission, was doing really well, then it came back and killed him.”
“Right now, today, the neuroblastoma is doing nothing. But we can’t say it’s gone from Eli’s body for good. We can’t yet say it won’t grow again. And that’s the hardest part of it all – the unknown. That’s the scary part for me.”