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 that their presence was a key marker for diagnosis. Another one we could tick was developmental delay, another large head, and still another freckles under his arms. It meant the doctor was right and as I read on about complications and tests my mind began to panic. The condition causes benign tumours 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 tumours can only be seen properly by MRI my first thought was should my little brown haired boy have to have anaesthetic to have a brain and body scan?
This was my first taste of the form of anxiety that is common with parents whose children have NF1: SCANIETY, a form of anxiety that is 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.
Before our child ever has their first scan we still suffer with it. The ‘what-if’s’ 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 recognised as a clinical need so many families find themselves fighting for a scan to find out if their child has any internal tumours and if so where.
My son was 7 years, six months, one week and two 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 anaesthetic. 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?
Scaniexty 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.
Scaniexty 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 tumour 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 tumour, next time there could be more.
What should have been a six month wait until the next one turned into an agonising ten months before we finally had our next scan on 3rd March this year. The scaniexty 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 scaniexty never leaves you.
This time the results showed the original tumour was stable but he 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 they could find a tumour 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 scaniexty it brings either.