A UNIQUE DIAGNOSIS

Every cancer journey is different. Each diagnosis has its unique set of challenges. Some cancers have effective treatments and good survival rates. Others, not so great. In rare cases, there’s a full stop even at the beginning. DIPG is one of those.

A paediatric brain cancer diagnosis, which kills more children in Australian than any other disease, is particularly cruel. A DIPG diagnosis, however, is in a category of its own. Uniquely decimating. Terminal on diagnosis. No survivors. The average survival time is nine months, which means half of all children don’t make it that far.

Effects of DIPG

Because of its location in the pons - the “Central Station” of the brain - it’s particularly hard to treat. The pons contains the nerves and muscles we use to see, hear, eat, walk and talk, and is responsible for controlling our heart rate, blood pressure and breathing. Any attempt to remove the cancer will affect live, working tissue and the body’s ability to maintain basic, vital functions. The risk of catastrophic deficits – paralysis, stroke, death – is high. This is because DIPG is not a typical mass but rather tumour cells that are scattered throughout the pons. If you remove the tumour cells, you also remove the pons, which, as they say in medical circles, is not compatible with life. In plain speak, of all the cancers you don’t want your child to get, this is the one.

receiving a DIPG diagnoses - A parent’s perspective

“When your child receives a DIPG diagnosis, treatment options are limited and the prognosis is extremely poor. Radiotherapy is currently the standard treatment for DIPG. It’s palliative, and its effects are only temporary. In most cases, radiotherapy shrinks the tumour for a few months, relieving symptoms and pain, before it makes its inevitable march towards taking the life of your child in the most horrendous way.

With no effective treatment, you enrol your child in experimental clinical trials with drugs that have numbers instead of names and may have never been tested on children. Yes, clinical trials give you options, and they are the only way we are going to find a cure, but the options can be terrifying. As you scramble down a Google-propelled black hole trying to scour the world to uncover a trial or treatment with a lick of hope, you are sucked into a repellent world where previously sunny-faced children are now swollen by steroids and tangled in life-supporting tubes. Each maddening search slips you further down a sadistic vortex of despair, with sickening statistic after sickening statistic. Yet still you search on, hoping like hell that something will strike like lighting amongst the torment of beautiful children – your child - dying before they have a chance to live. It’s like a waking nightmare, but it’s real life, and it happened to our beautiful boy.

Before Levi was diagnosed, DIPG was an acronym we never knew existed. Now we have an intimate and gut-wrenching relationship with those four letters of the alphabet. I couldn’t actually remember the name of Levi’s cancer on the day we got his biopsy results. I thought it didn’t matter what cancer it was. We knew that it was aggressive and rare and it left our boy with a year to live. Turns out it did matter. It’s the worst of the worst and the doctors and scientists involved in Levi’s Project believe that once we can understand and treat this cancer, it will benefit all cancers.”

Kathryn, mum to Levi, forever 8