Story Of How I Knowingly Gave My Child An Inherited Cancer Syndrome, But I Don’t Regret It
If we are not surgically treated, about half of us who have MEN1 die before age 50.
I was diagnosed with MEN-1, a rare genetic disorder that resembles a particular type of cancer, in 2010. As only around 1 in 30,000 persons are affected, most people are unaware of it.
Even though things may be worse, I’m not without luck. Despite the incessant trips to UCLA and Stanford for CT scans, MRIs, blood tests, and numerous consultations that frequently provide little clarity, the bulk of my tumors are benign, and I am able to lead a relatively normal life, albeit one that is filled with surgeries and exhaustion but is nonetheless full of blessings.
According to research, MEN-1 doesn’t always result in death, but it can shorten life; roughly half of individuals who are diagnosed with it do.
To be honest, I’m more worried about how this will affect our son than I am about how long I will live. He is not alone in this; there was a 50% possibility that all of my children would inherit the illness. Unlike recessive genes, which need two to be present, MEN-1 is autosomal dominant, meaning that if you inherit one defective gene, you have it.
Soon after my diagnosis, two of our children tested negative, and three more have not yet been tested. Both the knowledge and the ambiguity are constant sources of worry for Joe and me.
I have a strong desire to know what our son is going through and how I can help him as a mother. However, our children’s inner lives get more elusive as they become older. I can only consider my own emotions in the absence of definitive answers.
I left Joe and the kids at home the day I got my diagnosis and went on a hike across the surrounding hills, attempting to run away from my fear. Would I be the twentysomething who left them too soon? I had made a self-promise not to. I walked for two hours, and when I finally made it home in the dark, I wished that the physicians could finally tell me anything.
I can only assume as to what our son is thinking as I type this. He was tested for genetics when he was little, and he is well now. Luckily, we have a happy time together, and he doesn’t seem to be concerned about the unknowns that lie ahead of us.
However, we face a devastating reality as parents: at least one of our six kids has neuroendocrine cancer, a hereditary abnormality that flashes alarmingly on imaging tests.
Although the type of cancer that John Green’s character had wasn’t inherited, metastatic sickness is a real possibility. This hereditary load that I have passed down to my innocent child.
Joe and I already had three children when I received my diagnosis. Even on those tired days, I’ve never regretted deciding to have six children in spite of the difficulties. That’s part of the reason we chose to add three more children to our family even though we were aware that I had this “slow-motion cancer.”
But at one of my appointments, a UCLA resident made the speculative comment, “MEN1 is…significant.”
I took offense at the insinuation. I shot back, having already decided that I wanted more children. “I wasn’t asking for your thoughts on having more kids,” I said.
Anyway, who requested that doctor’s opinion? My motivation came from my kids, and I was only interested in finding out if it would make sense to bank cord blood.
