Last spring marked the five-year anniversary of my son’s final chemotherapy treatment for metastatic brain cancer. Five years feels so long ago, a lifetime ago, yet there are still moments when the horror of his journey feels like yesterday.
Avaric* was diagnosed with high-risk medulloblastoma, a cancerous brain tumor, in 2012—he was seven years old. His symptoms had included headaches, dizziness, and double-vision. When an ophthalmologist discovered that his eye was crossing, we assumed that the issue could be easily corrected with a routine surgery. No worries. But a 7-year-old with a randomly crossing eye was suspect. It led that doctor to order an MRI…just to be safe.
The call after that MRI changed our lives, threw everything into chaos. “Are you sitting down?,” the doctor asked. I remember standing up, rebelling against the words that were about to be hurled at me. The MRI had revealed a brain tumor; the doctor told me that the mass was a little larger than a golf ball. My body didn’t feel like mine. I heard the words but couldn’t really comprehend them.
We met the neurosurgeon later that day. He ordered another MRI. An image of my son’s spine would reveal if the tumor had spread into the spinal column. That night was beyond fear; it was prayers, bargaining. A silent plea for it not to be cancer.
But that mass was cancer. And it was aggressive. The tumor had spread into my son’s spinal column, leaving little splotches of cancer cells down his back. When I saw that MRI, the image of his spine, I wanted to throw up. This was a death sentence. I knew it.
I asked the neurosurgeon for the prognosis—how long did we have? I needed to prepare; I needed to know. He looked at me like I had lost my mind. And I will never forget what he said. “We can still cure him.”
The surgery to remove the brain tumor was more than eight hours long. Recovery was rough. Medulloblastoma develops near the cerebellum, which is the part of the brain that controls motor function. My son couldn’t walk after the surgery, so he left the hospital with a walker.
Meetings with the oncologists revealed an aggressive treatment plan. Six weeks of radiation combined with chemotherapy followed by a six-week break. Then six months of heavy in-patient chemotherapy. Avaric’s hair fell out a few weeks after radiation. He was so sick that he couldn’t eat. Eventually, he required a feeding tube—his was a g-tube (or a gastronomy tube).
The chemotherapy was awful; he spent each month hospitalized for three days to receive treatments—then his white blood cell count would drop to zero and we’d find ourselves back in the hospital. Sometimes for a few days. Sometimes for longer. Thanksgiving was celebrated in the hospital. Christmas was almost celebrated there, too; thankfully, he was discharged on Christmas Eve.
Throughout this round of treatment, I googled for hope. Did any child survive high-risk medulloblastoma? I would find a story, and then it would end without updates. But no sad news became good news.
I held onto hope that survivors existed. Even when all I found on the internet pointed to death and despair.
Hope matters. Hope was all we had.
Avaric received countless medications. He required painful injections to help boost his white blood cell count. He threw up so much that vomit became the norm. G-tube feeds were programmed nightly. He lost so much weight that he looked like a skeleton. MRIs were scheduled every three months to check his spine and to see if the cancer was at a standstill or if it had reared its ugly head.
His last chemotherapy treatment was in April 2013. And about a month later, another MRI revealed that he was stable. Nothing was growing. The treatments had done their job. But life was different. We were different. His hair grew back—although it’s still patchy. He gained weight. He went back to school.
But every three months, the fear returned. Would the routine MRI reveal that the cancer was back?
With each MRI, we held our breath. Quarterly MRIs were moved to biannual MRIs. Then once per year. And five years after his last treatment, that’s still our new normal: yearly MRIs. Those scans never get easier—they probably never will. But he has survived metastatic medulloblastoma.
Still, the journey isn’t over. He has years of MRIs ahead of him. The fear will always, always permeate our hearts. But he’s alive. And full of joy.
That seven-year-old little boy is now a teenager. He’s moody. Sometimes he is embarrassed by his parents. He fights with his brother. He plays in the band. He works hard at school and has overcome learning struggles from his treatments. And he’s happy. So happy.
I don’t know what the future holds. Honestly, I don’t want to know.
I’m just grateful for every single day that we have been given with our son. The little things—they matter. I see fireworks differently; the sound of wrapping paper being ripped becomes symphonic on holidays. The birthdays became monumental. When he turned 8, I was overwhelmed with joy and relief. He survived a year. Then 8 turned to 9. Suddenly, he hit the double digits. When he became a teenager, it was a milestone that I cannot even put into words. Six years ago, the age of 13 seemed so far away. Almost unreachable.
Yet, here we are. Six years later. And next year is high school. The gratitude I feel, the happiness, it’s an indescribable gift. I remember when we feared he might never experience the happy treasures of life again.
In the midst of despair, suffering and horror, you never, ever stop clinging to hope. And you shouldn’t. Hope exists. Even in the case of metastatic medulloblastoma, survival is possible. Six years after Avaric’s diagnosis, we still cling to that same flicker of hope. We’ll hold onto that hope during his next MRI, and we’ll hold our breath when the phone rings with the results.
But we won’t give up. We can’t. His life depends on hope. And so does ours.
*Name changed for privacy