Updated: Sep 29, 2020
By: Dayle Bugalski
“But he’s in remission, right?”
I can’t tell you how many times I heard that phrase during the course of my son’s cancer treatment, as if that meant his leukemia diagnosis wasn’t really that big of a deal and that we could return to our regularly scheduled lives. It was infuriating, actually, and having to explain what remission actually meant over and over again to nearly every single person we crossed paths with was exhausting.
It’s a safe assumption that the majority of people equate remission with being cured and cancer free. I myself probably thought that, too, before I became a cancer mom. But in September of 2012 when I officially became one, it all became crystal clear. At the time, my son was 2 ½ and he was diagnosed with Acute Lymphoblastic Leukemia (ALL). We were forced into a world of PICC lines and ports and chemo and blood transfusions and medical terminology and a level of worry that I never really thought possible. The treatment protocol for kids with ALL is to basically hit them, hard, with chemo in the first 30 days following diagnosis to eliminate as many of the cancer cells as possible. The goal of that first 30 days is to get them into remission, and 95% of kids achieve that goal. But what most people don’t know is that even though it’s called remission, the cancer is still there. It’s just not detectable with the technology that we have today. If a child diagnosed with ALL successfully achieves remission after 30 days and then stops treatment, the cancer, wherever it’s hiding in the body, will continue to grow out of control and the child will eventually die.
So yes, he has been in remission since day 30, but we still have 1,113 days of treatment left.
1,113 days of chemo and steroids and lumbar punctures and feeding tubes and blood transfusions and ICU stays and infections and life-threatening side effects. And even when we finally arrive at that 1,113th day, it’s still not over. Because more than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years old. Because every time he gets a fever or falls asleep on the couch on a lazy Sunday afternoon or has a new bruise on his leg or gets a bloody nose, my mind goes there.
‘Are his lips pale?’
‘I wonder what his platelets are?’
‘Is he tired because his hemoglobin is low?’
‘Is it coming back?’
When your child is diagnosed with cancer, as a parent, it never goes away. The chemo may be long gone and the port may have been removed years ago, but the fear that it might come back is always at the forefront of your mind every time he says he’s not feeling good. So the bruises that kids get because they’re kids are never just that to cancer parents. They’re red flag reminders of what once was and what could be again in the future.