Real Stories

A Cancer Diagnosis at 6 weeks old

Jennifer Northey shares how her son Eli’s cancer diagnosis affected her family.

At only three months old, baby Eli had undergone two rounds of chemotherapy and a tracheostomy. Mum, Jennifer shares how their Redkite Social Worker helped Eli’s siblings understand what was happening to their brother.

My husband Peter and I have four children, Luke, our eldest is ten. Then we have Liam, who’s eight, Ava, who’s five, and Eli, who’s two.

When Eli was born, he never took that first breath on his own – he didn’t make a sound. I remember saying to Peter, “Why can’t I hear him cry?! Why can’t I hear him cry?!” When I woke up in recovery, Eli had a CPAP machine on and was laying there with a feeding tube in his mouth.

The doctors told us they didn’t know what was going on and that they were going to have to transfer him up to Sydney. When I arrived, Eli was in a humidicrib at Randwick. He was the sickest baby there and was virtually non-responsive.

No one could tell me what was wrong, the nurse tried to pull the breathing tube out, but it failed. He just continued to have this breathing sound, breathing sound, breathing sound to the point where he had failure to thrive. Every breath he was taking was using so much energy that he wasn’t gaining any weight.

At five weeks old it was decided that Eli needed a tracheostomy to help his breathing. Ten minutes into the surgery the doctors came out and told us they had found a lump in Eli’s neck. The results came in a few days later that our six-week-old had a neuroblastoma, a rare form of paediatric cancer. Within two or three days, he was starting chemotherapy.

Our entire family spent the next three and a half months in hospital. Peter and I weren’t working and after a while, our other kids started to rebel quite terribly.

Luke, my eldest, was the only one that was in school at the time, so he went to school at the hospital. My two other children had to hang around the hospital with us. It was just too much for them.

The Redkite Social Worker was there to support us. She had a book about teaching younger siblings what cancer is and went through it with the kids, it was so beautiful. We thought the kids were going to fall apart, that it would them send them into depression, but the way this story was written like a children’s book was amazing. It had pictures of kids without hair, and it went through what chemotherapy is, the treatment, how some kids get better and some kids don’t get better. It was a really nice way to tell the kids.

The Red Bag also helped a lot. I love that bag, It’s like a badge of honour, I guess. When you go to the hospital, and you and you see another Mum you’re like, “Hey. Oh, I’ve got that bag too.”

Living in the hospital for months started to take its toll on all of us. The hardest thing was not knowing what to expect. What really helped Peter was reading the family stories on the Redkite website. Reading about the kids that make it through and get better gave us hope for Eli.

To have an organisation that is there to pick up the pieces for us, it’s exactly what we needed. We’re just so grateful.

Eli is now in remission, healthy and happy. The first round of chemo stopped the tumour progression and the second round killed off the active cells. Over time, his body absorbed the mass until there was nothing there.

Eli is lively, fun and very affectionate. I remember we were at a party, and all my kids were wrestling together on a trampoline. His brothers and sister don’t see him as anything different. We still manage Eli’s tracheotomy every day, but that’s normal.

We are so grateful for organisations like Redkite who are there to support families like mine. We honestly couldn’t have done it on our own. Eli is turning three soon and will no doubt spend it playing dinosaurs with Luke, Liam and Ava.

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