Surviving rare childhood brain cancers

There’s nothing in Luca Boggia-Hall’s winning smile or cheeky attitude to suggest the suffering he’s endured – surviving one of the rarest childhood brain cancers known to medicine.

You wouldn’t spot the small bald patch, amid his mess of dark, wavy hair, which is the only remaining evidence of the brain surgery that saved his life when he was just three years old.

To all the world Luca is a normal eight year old boy, which is just the way his parents like it…..but they know different.

Surviving rare childhood brain cancer

Monique and Baden know he survived one of the rarest childhood brain cancers known to medicine.

But when your small child goes from perfectly healthy to projectile vomiting and struggling to hold his head up in the space of a week, you take the only options available.

“It’s just so unfair. He’s just such an awesome kid, and he’s only three years old!” – Baden Hall, Luca’s father, in the early days after diagnosis.

In Luca’s case it wasn’t just the fear of cancer, but of something so rare that there was no known treatment beyond surgery – and even that carried enormous risk of brain damage, or worse.

Childhood brain cancer – how do we treat it?

They agreed to follow the doctors’ advice to “throw everything at it, delaying the most aggressive treatment – radiotherapy – for as long as possible, allowing his little brain more time to develop, in the hope of reducing side-effects.”

Monique still gets emotional around his birthday each year, remembering the awful times and the fears of what they might lose – remembering how their thoughts swirled and multiplied.

“Brain cancer…..my baby has cancer! Rare childhood brain cancer. What on earth happens now? How do we treat childhood cancer? What if the treatment doesn’t work? How will he get through this? How will ‘we’ get through this? How do we keep things normal for him? How do our lives even work now? What if the cancer wins? How do we parent a child with cancer?”

So they did all they could do – sitting with their little boy through the endless bouts of chemotherapy and radiotherapy.

Beyond that, all they had was hope.

That’s why Monique and Baden want tissue from Luca’s tumour to be used to find and test new treatments for childhood cancer, so the next family that faces the same awful diagnosis can receive more information, more options…..more hope of surviving childhood cancer.

It’s the same reason the Childhood Cancer Model Atlas exists.

It’s why every dollar takes us one step closer to finding cures.

And a step closer to another happy ending, just like Luca’s.