Every month readers tell their stories--in 40 to 400 words--on a different healthcare theme.
I'm sitting at my desk when the phone rings. A blue jay is feeding her baby in the coral tree outside my window. She is determined and direct, pecking her catch in gentle spurts into the little bird's gaping beak. The fledgling squawks hoarsely for more. I pick up the phone.
It's my son's oncologist. My heart no longer jumps into my throat when I hear his voice; we speak frequently now, comanaging my son's leukemia--a case that is proving anything but ordinary. I have no idea why he is calling today.
Several weeks ago, I requested a test for Constitutional Mismatch Repair Deficiency Syndrome (CMMRD). I'd read about it online in one of my late-night research marathons. It's a rare genetic condition characterized by some of my son's more unfortunate quirks--café-au-lait spots, hematological malignancy, hypopigmentation--and I thought it might answer the question we've been asking since his cancer diagnosis: Why?
Dr. O had agreed to facilitate the test. An extra vial of blood was collected and sent off. Our role was finished. I pushed CMMRD from my mind. Shoved it, really; it wasn't a welcome thought. There were also more pressing issues, like enjoying my eight-year-old's remission.
The mother bird flies into a nearby tree. The fledgling watches her, then beats his fresh wings and flits to another branch. "The results from the CMMRD test are back," Dr. O says. He pauses a half-second too long. "They're positive."
I accept this information easily at first, relieved that the mystery is solved. But I hear strain as Dr. O tells me that my son's treatment regimen won't change. I hear gravity as he discusses the surveillance plan moving forward. I realize that shoving aside thoughts of CMMRD had meant avoiding the rabbit hole of its implications. Now the pause, the strain, the gravity I detect over the phone tells me I don't know enough.
I pull up the studies I'd found before and will myself to scroll down, into dark places: DNA can't repair itself. Extremely high risk. Multiple cancers. Will not reach adulthood. I sit up straight. I don't believe these words. Not at all.
The mama bird returns with fresh sustenance. The baby puffs up noisily, proud of its new perch. Dr. O is commending my research efforts. It's a well-intended but cruel consolation prize. I smile weakly through the phone. "Well. He's our kid. Ya know?" The baby bird opens wide.