Sarah & Benjamin's story

Leukemia and adenoid cystic carcinoma

Patient Voice spoke with oncology mom and rare cancer survivor Sarah DeMelo about the challenges of balancing her son Benjamin’s cancer journey with that of her own.

Oakville, ON

In August of 2022, just two weeks shy of his third birthday, and while I was still on mat leave from my second child, my son Benjamin was diagnosed with leukemia.

I remember just wanting to curl up in a ball and cry. I couldn’t understand what was happening or why. The morning after he was diagnosed, it all felt like it had been a terrible dream, but then we spent the whole day meeting with oncologists and I slowly had to accept that this was all very real.

The next month was the hardest of our lives. Benjamin was on so many different chemotherapy drugs and on a steroid treatment that caused him to have crazy mood swings and gain a lot of weight. He looked completely unrecognizable within a couple of weeks.

While this was all happening, I noticed a lump under my chin. But there was so much going on with Benjamin that I filed it away as something to worry about later. It wasn’t until the end of September, when we had received the wonderful news that Benjamin was in remission, that I finally made a doctor’s appointment. From that point, the drama split into two separate, intertwined paths. Benjamin was still undergoing a lot of treatment and monitoring and now I was also being scheduled for MRIs, CT scans, biopsies, surgeries, and radiation. Adenoid cystic carcinoma.

Today Benjamin is doing really well. He turned four in August and began junior kindergarten in September. We’re so grateful that he was well enough to start school. He loves it there and it’s so nice to see him play and interact and learn with other kids his age. But it’s so hard to have the victories and the good news in Benjamin’s cancer journey coincide with the challenges in my own.

“I went straight from wondering if my one kid was going to get to grow up to wondering if I’d get to be there to see either of my kids grow up.”

My husband and I spent so long looking forward to the moment he’d be in remission and we could finally breathe. And then the universe was just like, BAM, here’s some more cancer for you. I’m so happy to know that my Benjamin is going to be okay, but no one can tell me yet if I will be. I’m still really in the thick of it, not knowing if I’ll get to see my kids grow up. Being a caregiver and a patient at the same time is absolutely crazy.

There’s no good time to get cancer. But there are probably better times than while you’re on maternity leave. Especially while you’re still reeling from the unexpected diagnosis of your first child — just three years old — with leukemia.

The news of my salivary gland cancer — adenoid cystic carcinoma — came just as we began to finally see encouraging results from Benjamin’s leukemia treatment. Elliot had just turned one. I went straight from wondering if my one kid was going to get to grow up to wondering if I’d get to be there to see either of my kids grow up.

What was supposed to be a short and joyful break from my career in the legal field has stretched from maternity leave to caretaker leave to long-term disability.

It’s been hard to let go of that part of me. I miss it. I want to get back to the workforce, but even thinking about it is overwhelming. I’m filled with exhaustion and anxiety, struggling still with brain fog from my treatment — all new invisible disabilities. As much as I want to get back to a sense of normalcy, I know I have a lot of healing and grieving to do. Knowing I can never go back to who I was before cancer is a tough pill to swallow. I’m told with time it will get easier to live with the uncertainty and fear of reoccurrence.

It'd be very easy to feel lost and isolated in all this. I’ve been so fortunate to have my family and my community — both locally and online — to provide a sense of belonging. Our local community has really stepped up for us, checking in, dropping off food. And my online community has been so great, providing support and helping me connect with other families who have gone through similar struggles.

Being a patient and a caregiver at the same time is absolute madness. It’s been a shock to see firsthand both the childhood and adult cancer experiences at once. They’re so different. It’s a very weird place to be in, and I cherish everything that provides a sense of normalcy. For now, normal is friends and family, school and home.”