The 'Scanxiety' I Live With as a Parent to a Child With NF1

He was 4 years, 3 weeks and 5 days old when I left the hospital with a piece of paper with the words “neurofibromatosis type 1” scribbled on it from a doctor I had only just met.

The more I Googled, the more upset I got.

Would you not be anxious if your baby was diagnosed with an incurable progressive genetic condition?

Back then my biggest worry was seizures. The cafe-au-lait marks on his little body had meant nothing at all until that day, but now I read their presence was a key marker for diagnosis. He also had developmental delay, a large head and freckles under his arms, which meant the doctor was right, and as I read on about complications and tests my mind began to panic. The condition can cause benign tumors to grow anywhere on the nerves of the body, causing a large variety of difficulties including scoliosis, vision impairment, bone deformities, epilepsy, learning difficulties and facial deformity.

As the tumors can only be seen properly by MRI, my first thought was, “Should my little brown-haired boy have to have anesthetic to have a brain and body scan?”

This was my first taste of the form of anxiety  common with parents whose children have NF1: “scanxiety,” anxiety associated with having scans and waiting for results. You won’t find that word in a dictionary, but parents of children with NF1 understand it and struggle with it so much.

You may never have heard of it, but we live with it none the less.

little boy asleep in the hospital

Before our child ever has their first scan, we still experience it. The what-ifs of thinking should he/she have an MRI and if so how do we convince doctors to give them one? In some areas it is standard procedure to scan a child soon after diagnosis to have a base line to work from, but for so many others this expensive test is only given when there is a clinical need. Parental anxiety is not always recognized as a clinical need so many families find themselves fighting for a scan to find out if their child has any internal tumors and if so, where.

My son was 7 years, 6 months, 1 week and 2 days old when he finally had his first MRI. From the moment I received the appointment I was anxious. It was going to be the first of many times he would require anesthetic. How would he cope? How would I arrange care for his sibling? Would be need to stay overnight? What might they find? When will we get the results? Scanxiety is scary. My whole life was suddenly out of control, and everything rested on the results of this scan.

Two weeks and five days later, I had a phone call from the doctor. Could we come to the hospital the following day as a matter of urgency to discuss the results?

Scanxiety hit again with a vengeance. They had found something.

They discovered a number of things from that first scan. My son had a serious eye condition unrelated to his NF1 which meant he had no sight in one eye. On the other eye he had something called an optic glioma, which so many NF parents dread: a tumor on his optic nerve. A group of oncologists discussed my child’s case and decided, for now, no treatment was needed. We were sent home.

Scanxiety never left me though.

In six months’ time we would be back for another scan. My mind could not ignore that. He had a scan, they found a tumor. Next time there could be more.

What should have been a six-month wait until the next one turned into an agonizing 10 months before we finally had our next scan on March 3 of this year. The scanxiety of waiting for that second scan was awful. The day of the scan was awful. Waiting on the results is awful.

When your child has NF1, scanxiety never leaves you.

This time the results showed the original tumor was stable, but my son also has brain lesions, one of which is large, and these are a direct result of his NF1 too.

We live with the constant worry he may one day need chemotherapy. We live with the worry he could go blind due to his optic glioma since he has no sight in his other eye at all. We live with the worry they may one day find a tumor that keeps growing.

I live with anxiety as a mum to a child with NF1. That anxiety is deeply connected to the fact my son needs ongoing scans for the rest of his life.

There is no cure for NF1, and there is no cure for the scanxiety it brings either.

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