What the NF tumor foundation taught me about writing

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Do you pay attention to the “little things” when you write? Never forget that’s what’s little to you might be a big issue for someone else!

My triplet children are now 16 but when they were toddlers, my husband and I had one particularly black piece of humour. We used to joke that our smallest daughter enjoyed going to children’s hospital because it was the only way she could get time alone with mom and dad.

This was a dark joke because our daughter has a troubling genetic disorder known as neurofibromatosis or NF1. I tell you this story today, not to make you feel sorry for my daughter or for me, but as a writing lesson. More on that in a moment.

Given the hefty size of my subscriber group, I know there will be a number of you who have NF too. (Incidence is 1 in 3,000). But partly because of the complicated name and mainly because many people have it without any obvious health problems, NF remains one of those under-studied, under-talked-about disorders. In fact, the genetic marker (an error on chromosome 17) wasn’t even identified until the late 1990s — after my daughter was diagnosed.

Children with NF used to be identified primarily by two things: The presence of cafe au lait spots on their bodies — those pale brown blotchy marks that most of us call birth spots. Whereas you or I might have two or three of them, my daughter has dozens. The other clinical identifier is a Lisch nodule. These harmless yellow-brown papules are found in the iris of the eyes of most people with NF.

The main troubling feature of NF, however, is it causes tumours to grow on nerves. When my daughter was about 11 months, we started to notice that one of her eyes wandered persistently. It turned out she had an optic tumour. Later, thanks to scanning, we received even worse news — she had a brain tumour. As I tried to quell my panic, we readily agreed to her doctor’s suggestion that we just watch it for a while.

Within months, the tumour grew to such a size the doctor told us it was time for chemotherapy. I was gobsmacked! Everything I’d read suggested that NF tumours typically waxed and waned and that no action should be taken quickly.

I immediately contacted the National Neurofibromatosis Foundation in New York and asked for advice. The group connected us with an exceptionally kind Chicago doctor who agreed to look at our daughter’s scans, at no cost. We couriered them to him and he called with even worse news. It was a very aggressive tumour and he recommended a biopsy so that doctors could better select the chemotherapy agent.

Well! This threw our medical team into a frenzy. In Vancouver, no neurosurgeon would consider a biopsy — they thought it too risky. The arguments raged wildly, across two countries until, finally, we parents decided the message was simple: Go ahead with chemo. We simply requested one thing: a fresh MRI, so we knew the exact size of the tumour before treatment. Being summer it took several weeks to arrange.

And, here’s the utterly amazing fact that MRI revealed: the tumour in our then-four-year-old had stopped growing. To his credit, our doctor observed the irony: “If we’d treated her,” he said, “we’d be congratulating ourselves on taking the correct action,” he said.

My daughter is fine, for now. She is blind in one eye (as a result of that very first optic tumour) and she has significant learning disabilities (a common effect of NF); otherwise, she is doing well. But because NF can strike again, anytime, the disorder is still a topic about which I care deeply.

So here’s the writing lesson. This week, I received an email from the former National Neurofibromatosis Foundation — now renamed the Children’s Tumor Foundation. May is apparently NF month. The email asked us to Facebook and tweet friends and included a list of “10 Things to be Aware of about NF.” Immediately, I took the first item and copied it into Twitter. It was 43 characters too long!

I checked the email’s nine other points. Each was too long.

Although I edited the messages and tweeted several, I imagine that many other people didn’t take the trouble. I cut the Foundation some slack because they were so kind to us 12 years ago. But when you are writing, always triple-check important details, such as the length of the message.

This is especially true if the lives of children depend on your work.