High ‘Scanxiety’: Portrait of a Brain Tumor Parent on the Brink

By Suzanne Leigh

Note: Brain tumors can recur with symptoms — or without any at all. Routine scans catch recurrences early, sometimes when they are easier to treat. But for most children with malignant brain tumors, a recurrence means that the chance of long-term survival diminishes significantly.

  • Hearing “I have a headache” from your child unleashes unadulterated terror. (Meanwhile, you get normal stress-related headaches all the time.)
  • You watch your child constantly for indications of new tumor: Is he dragging his leg, is her eye turning in, is his smile turning down. Is she drooling, is she struggling to swallow … isn’t he holding his pencil a bit awkwardly?
  • Your child gets irritated with your increasingly frequent amateur neuro-evals: Can you walk heel-to-toe in a straight line, please. How many fingers do you see down here, Honey? And how about up here?  Can you touch your nose and my finger, with your finger? PLEASE Honey, I’m almost done …
  • You realize you no longer fit in with the other parents at school when you hear them despair about Jonah’s ADHD or Madison’s braces.
  • Even if you’re an atheist, you think about praying.
  • A casual reference to an event that occurs around the same time as your child’s next MRI prompts a wave of nausea.
  • Your heart palpitates whenever you check the mailbox: Is today the day you get the next “summons” to the hospital imaging center?
  • You snap at kind friends who assure you that the results of the MRI will be clear.
  • You snap at kind friends who tell you there’s still hope if the MRI shows new tumor.
  • The night before the MRI, you wonder if this time tomorrow you will be elated or devastated – there is usually no in-between.
  • You look at your child as they sleep, entranced with their loveliness and innocence.
  • You wonder (irrationally) what you did to make them have a brain tumor.
  • You can’t fathom why the brain tumor targeted your child – why not you?
  • You never question that living with scanxiety is better than the alternative of living without your child.
  • You wake up on MRI day wondering if today will be the worst day of your life.
  • Your cheerful MRI-day mask slips whenever your child is not looking.
  • You try to translate the radiology tech’s smile after your child has had their scan: was it relief because it looked clear, or sympathy because it didn’t?
  • You go back home and wait, white-knuckled and sick to the stomach, for the call from your oncologist. Will your child get a reprieve or will you enter the terrifying terrain of brain tumor recurrence?

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