Kodie and her partner live in fear their son could die at any moment.
Here, Kodie, 31 tells the story in her own words.
Tucking my sweet boy into bed, I gave him a goodnight kiss. ‘I love you with all my heart,’ I told Eli, 14 months, as he drifted off to sleep.
Creeping out of the room, I tried not to let dread wash over me. I hope he wakes up, I couldn’t help but think. The fear our boy could die in his sleep is something my partner Matt, 34, and I have had to endure since before he was born. It was November 2016, when, at 35 weeks pregnant, I went to the hospital with Matt to have a routine scan. Childhood sweethearts, we’d been together for 15 years and trying for a baby for nine. We were just about to start IVF when I’d fallen pregnant. Now we couldn’t wait to meet our boy.
‘He’s not been moving as much as he was before,’ I mentioned to the midwife.‘Let’s do a growth scan to see what’s going on in there,’ the nurse said. That’s when we got some devastating news. A lump the size of a tennis ball was discovered on Eli’s chest. Five weeks earlier, ascan had showed no abnormalities so it must have grown that size in just four weeks.‘Will he be okay?’ I asked through tears. Eli’s heart was failing due to the mass squashing his right lung, which in turn was adding extra pressure to his vital organs. ‘He might not be able to survive delivery,’ a doctor told us. I never went home from hospital that day.
Me, Matt and Eli
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After a week of receiving steroid injections to try to strengthen our son, Eli was delivered by C-section. Even though he was born four weeks early, he was a healthy 3.8 kilos. Eli was whisked away to NICU, so all I could do was give him a quick kiss. He was gravely ill and immediately intubated. ‘It’s likely he won’t make it through the next three days,’ a doctor told us. It felt so unfair, we’d only just met Eli and now he was going to be cruelly pulled away from us.
While doctors waited on the results of a biopsy of the growth, they discussed Eli’s options with us. They could make him as comfortable as possible and wait for him to die, attempt to operate to remove the tumour, or start chemotherapy – something that has never been done before on a baby so young.‘We want him to have as good a quality of life as possible,’ Matt said. Then tests showed that Eli had an inoperable cancerous tumour on his chest called congenital fibrosarcoma. Knowing it couldn’t be removed, we opted to try chemo – to give Eli the best possible chance of survival.
Seven weeks of intensive treatment followed. Seeing my tiny baby hooked up to machines and wires was heartbreaking. ‘Are we doing the right thing?’ I sobbed to Matt. But we knew our boy deserved a chance to live. In his typical spirit, Eli fought with all the determination and courage we knew he had. On New Year’s Eve, he was finally well enough for us to take him home. ‘I never imagined this day would come,’ I smiled to Matt as we bundled him into the car.
Eli keeps defying the odds
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A scan a couple of weeks later showed the tumour was shrinking. But our happiness was short lived. In March, another scan showed the tumour was now four times the size it was in January, and twice the size it was when first discovered. Once again, our world came tumbling down.By April, he was so gravely ill, we had no choice but to place Eli in palliative care. Our beautiful boy was given 48 hours to live. ‘Enjoy your child,’ the doctor told us. So there we were, living at the hospital, and waiting for our son to die. But once again, to the amazement of everyone, Eli defied all the odds.
Hours turned into days, which turned into weeks. Without any treatment, except for fluids to flush his system, Eli started to improve. After eight weeks, we took him home, where he’s now been for the past five months. And currently he’s not even having any treatment. Our son continues to challenge everyone – and along the way he leaves us all gobsmacked. Eli has shown us so many times that he is not ready to leave this earth. Knowing that every day could be his last, we try to make the most of every moment. There’s also the odd glimmer of hope. A new trial in the US is having great results. Eli’s doctors have put his name on a list, should the trials ever come to Australia. There’s also a possibility of Eli’s tumour being surgically removed if he can reach an age where doctors are prepared to operate.
Oblivious to his problems, Eli’s such a happy child. He absolutely adores cars, is always smiling and just loves life in general. No matter what happens, we already have so many highlights with Eli – his first birthday, his first Christmas, his first steps, and his first words. Our boy continues to amaze us every day and for that we’re so grateful.
Our happy Eli enjoying Christmas
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