'My son was given a year to live. It was the most heartbreakingly beautiful of our lives.'

At just seven years old, Levi Wheeler was diagnosed with the deadliest childhood cancer, diffuse intrinsic pontine glioma (DIPG). Here, Levi’s mum Kathryn reveals what’s it’s like to have a child with a terminal illness.

Doctors found a mass on Levi’s brain on December 20, 2017. Little more than a year later he would be dead, stolen by a lethal brain tumour called DIPG.

For all its ferocity, Levi’s DIPG journey began rather benignly. When his eyes appeared to go cross-eyed in the lead up to his diagnosis, we took him to a specialist who ordered an MRI.

“I am sure it will be fine,” he said, and we believed him.

The next day we were told to take Levi straight to hospital because the scans revealed something was very wrong. Within minutes we were told the mass was in a critical spot (his brain stem) and it wouldn’t be safe to operate.

Levi tells his mum he loves her, taken just before he passed away. Post continues below.

A few weeks later, after a biopsy on his tumour, we were ushered into an oncologist’s office and dealt the shattering DIPG blow. Levi had a year to live. On paper, his odds were even bleaker. Half of all children diagnosed with this type of cancer don’t make it past nine months. “So there’s no hope,” I choked to the doctor. “There’s no cure,” was his measured response. What he meant and what we couldn’t comprehend at that moment was that hope comes in many different forms, despite a fatal prognosis.

The anguish of knowing our child would die began immediately. Torment is the word which best describes the experience, because it perfectly encapsulates the consistent and unforgiving onslaught of torture that it inflicted. Yet the 12 months we had with Levi and our other two children post-diagnosis were the most heartbreakingly beautiful of our lives. We lived and loved as though our world as we knew it was ending, and it was.

In the beginning of Levi’s cancer journey, we were offered radiotherapy. The doctor said it would be a temporary fix, that the cancer would inevitably grow and kill Levi. I asked why we should do it. What was the point of subjecting him to pain and suffering if it wouldn’t change the outcome.

As our journey continued, and Levi was in his ‘honeymoon’ period where the radiotherapy had shrunk the tumour, many people would marvel at how well he was doing. Despite having the most aggressive cancer rapidly mutating inside his brain, Levi looked and went about life for most of the year like a ‘normal’ seven-year-old boy. I use the term ‘normal’ very cautiously because it severely diminishes the complexity of what he was dealing with and what our life was like. But essentially, he was remarkable in all that he achieved that year.

On the one hand, we had the crippling, unavoidable reality of his cancer, and on the other, we had a vibrant life which carried on, forever changed. We had a beautiful brave boy who went to school one day and treatment the next. A soccer-mad, energetic kid who could tear up the pitch with his mates, all the while undergoing experimental and invasive treatments.

My husband Ben and I accepted Levi would die from early on. This doesn’t make it easier to deal with or allay the shock. We just weren’t fighting an unrealistic expectation. That was energy we wanted to spend elsewhere. Some people spoke of miracles, that he would be the one to beat this. We acknowledged we were on borrowed time.

Our focus remained laser-sharp of having the best of times with Levi and as a family of five. So we got busy living. We travelled far and wide, swam with dolphins and sea lions, rode camels in the desert, saw the tallest building in the world, went zip-lining and skiing. We went to Paris so Levi could see his idol Ronaldo play soccer and watched in awe as he walked out with the match ball in front of thousands of people. We holidayed with family and friends, went camping near the beach. We had sleepovers and play dates on school days.

Amidst the adventures, there were meltdowns and tears, despair and alienation, loneliness and longing, grief and transformation. So many huge emotions in a year that solidified our relationships with people who mattered most to us. Those connections, and the love we have for our three tiny people, have seen us through.

Looking back, what stands out the most from our year of living in the spectre of death is experiencing the extraordinary in the ordinary. It’s hard to remember the parent I was before diagnosis. How I felt about those simple acts of watching our three kids walk to school together. Of glorious afternoons trampolining and playing soccer in the backyard. Of daily bush walks with our beloved dog Milo. How did it feel before? Did I ever realise how exceptional these small events were? Because I do now. A long cuddle in bed is to be luxuriated. Holding a hand is breathtaking.

In our year of living and dying, I had many thoughts and discussions about Levi’s mortality. Having never been through it, I believed that having time to say goodbye was a better way to go, that the long farewell was better than a sharp shock of death. No final words, no last kiss on the cheek. And in many ways, those 12 months were the most special time in our lives, tinged with the heavy weight of knowing it wouldn’t last forever.

But the agony of knowing death will come to your child in ways we still can’t reconcile is the most oppressive thing to carry. Having to crush his last shred of innocence and dignity with the knowledge that his time had come. Then watching him struggle to his last breath because he didn’t want to go. That will never leave us alone.

Our saving grace is the life we built, the family we created, the love we share. The beauty and the pain.

Levi’s Project has so far raised $2.4m for DIPG research at the Children’s Cancer Institute. November 15 marks what should have been Levi’s ninth birthday. We are encouraging everyone to donate $9 in his memory so other children with DIPG can have a future. To donate, go to Levi's Project.

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