He has reached the point where he can no longer move. No speaking. No swallowing. No eating. No blinking. He is trapped in a world where his mind is alive but his body is shutting down. He must know what’s happening but who’s going to be the one to broach the subject of death? After all, he’s only 7 years old.
The nightmare began almost 6 years earlier. My world had crumbled around me as a neurologist walked into our hospital room and announced he had very bad news: my 21 month old son Johnny had a brain tumour the size of a small orange. I had expected this terrible news because an hour earlier I had been in the room during his CT scan. The young technicians were friendly and we chatted effortlessly while we laid his little sleeping body on the table. Then, suddenly, I felt the air in the room change as they took their first glance at the computer screen. The technicians, who just a moment ago were chatting with me, were no longer able to look me in the eye. So I knew what the neurologist was going to say and I felt my breath being slowly sucked out of me.
The months of treatment that followed turned into six years as Johnny suffered through two 8 hour brain resection surgeries, countless cycles of chemotherapy, 6 weeks of radiation, high dose chemotherapy with stem cell rescue, lumbar punctures and MRI’s every quarter, 2 remissions and 2 relapses.
Now, six years later, I lay on my bed nose to nose with my son, watching him die a little more each day.
Was I supposed to fight for him? Was I supposed to refuse to accept the fact that he was leaving us? Was I supposed to show him and my other children that I won’t take this lying down? Maybe I should call someone, a specialist somewhere in the world, who would give me a fresh, new “battle plan”.
Or, maybe, I should give my son the last gift I could ever give him: a peaceful, loving death. There was little I could do for him, other than try to manage his physical pain and discomfort. I had no control over the progression of his disease. But I did have control over how I handled it. I could tell him in a way he understood, that it was ok for him to let go. I could love him through this transition and do my part to make it easier for him. I could tell him it’s ok to stop fighting; it’s ok to die. Six years of fighting was enough. Too much.
I feel honoured and privileged to have been given the gift of caring for my son during his journey with cancer and to have been able to hold him in my arms while he died. I’ve never felt guilt or remorse for “allowing” him to let go. Today, 7 years after his death, I’m still grateful. I look upon my caregiver role as the ultimate act of a truly selfless love…..my last gift to my son.