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.
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.