News and Stories


September 30, 2022

Lucas and his Family’s Journey with Ependymoma

Ependymoma – is a type of tumor that can form in the brain. It begins in the ependymal cells in the brain that line the passageways where the fluid (cerebrospinal fluid) that nourishes your brain flows. Ependymoma can occur at any age, but most often occurs in young children. 1 in 3 children with relapsed Ependymoma will pass away from this horrible disease.

Since July 2021 through the generous donations from YOU, our supporters, Kids with Cancer Foundation committed to funding a world first ground-breaking clinical trial for 2 years at a cost of $249,050 into finding a cure for “relapsed” Ependymoma. Paediatric Ependymoma is the third most common brain tumour in children.

At just 2 years old, little Lucas was diagnosed with Anaplastic Ependymoma on 4th August 2014.

Lucas was playing at a park one afternoon when he had a fall after stepping off the play equipment. Later that night, he had a bit of a temperature and was throwing up so his parents put him in a bath and put him to bed. The very next day, they found themselves in hospital with him because he wasn’t well.

He came good while they were at the hospital and so went home. That afternoon they were in the garden when Lucas’s mum kept saying to her husband, that she noticed Lucas limping from that fall. It wasn’t until the following week that his childcare picked up that he had a bit of a head tilt. His parents told them he had a fall to which they were quite concerned, so his parents took him to the GP as it triggered their concern a little more. That was the beginning of five weeks of trying to figure out what it was that caused the head tilt.

The next five weeks were a roller coaster of Lucas having temperatures, being sick, just vomiting and going to emergency. This went on and on for five weeks with weekly appointments and they just couldn’t figure it out, couldn’t diagnose what the problem was. The paediatrician was just shaking his head not being able to figure it out and then he said, “you know what, I think he might have nerve damage in one of his eyes.”  They were booked in to see an eye specialist who looked after kids and within three minutes of walking out of that room, they were booked in for an MRI at the Children’s Hospital at Westmead on the Monday.

Nothing was said about a tumour, so at that point, Lucas’s parents were still thinking it was just something else. They said the MRI would be about 45 minutes, but it went on and on. They sat waiting and waiting for hours. Finally, they were ushered into a little office. The doctor was sitting up, sort of leaning up against the desk and he just said, “there’s no other way to tell you, he’s got a brain tumour.”

Lucas’s parents were in total shock and before they knew it, his head was shaved, and they had stuck all the little things on his head to do a scan for the removal of the tumour. Lucas’s parents were told he had a 50% chance of survival. Lucas didn’t really understand what was going on. He just knew he was really sick and had to be in bed. Still, to this day, Lucas never talks about it. He can get quite upset and doesn’t like his parents talking abut it with friends.

It was incredible to hear when he was finally in remission.

8 years on and Lucas still must have a yearly MRI that he hates. It’s really hard to explain to him that he may have to go through that again and these MRI’s are to make sure it doesn’t come back.

Lucas’s family’s advice to anyone wanting to donate to Kids with Cancer Foundation is : you’re helping more than one person; you’re helping a whole family. If you can help in any way possible, it impacts so many people and is truly appreciated by all.

To find out more about how important this trial is click here. To help us continue to fund this very important trial you can donate here or do your own fundraiser this October for our Scare Cancer campaign and help us save more kids like Lucas.