Written by Sarah, mother of Colton

Picture this: You’re in an ice arena cheering on 7- and 8-year-olds learning how to play hockey, and they’re using the full length of regulation ice for the first time.

That’s a challenge for small bodies, racing back and forth and up and down on the ice while clumsily chasing after a puck.

As you watch you might see a little boy with sweaty, sandy brown hair skating. I see a little boy who has worked incredibly hard to compensate for the large tumor in his entire upper thigh. My son, Colton, has neurofibromatosis type 1.

Neuro-what? you ask: neuro-fibroma-tosis, also known as NF1. And no, I had never heard of it either before his diagnosis. That dreadful feeling sitting and waiting to learn if this is “something” or “nothing” is indescribable.

After lots of questions, a ruler, a black light and more questions, I had a sinking feeling this wasn’t going to end the way I had hoped it would. “Watch and wait,” we were told. That is the NF anthem. You watch and wait for changes in tumors and for new ones to pop up. It’s all you can do.

“Don’t Google it,” they said on the way out. I knew they were right, but when your child is diagnosed with something you’ve never heard of, your new job is to know everything you possibly can about the illness. Of course you Google it!

Reading words like rare, cancer, chemotherapy, surgery, learning disabilities, bone and skin abnormalities, cardiovascular issues, no cure and obituaries caused my heart to sink lower and lower.

The images were even worse. I knew they were worst-case scenarios, but in my heart I worried. What if that was our future?

Doctors ran a blood test to confirm the diagnosis, but by then we already knew Colton had neurofibromatosis from all the other signs. Still, getting the call a few months later when the results were in felt like a punch in the gut all over again. He has a progressive tumor disorder.

There are currently no effective treatments and no cure, only chemotherapy when the tumors turn cancerous.

What does that mean for Colton’s future and the future of our family as we know it? Am I going to make the right decisions for his medical care? Who put me in charge? I don’t know what I’m doing! Where is the manual for all this? Some days I still feel like I don’t know what I’m doing, but I’m doing what I can.

I am Colton’s advocate, his first line of defense, the link to his medical team and his main everyday caregiver.

Any change or pattern in his health becomes a journal entry with dates, times, symptoms and details — so many details because you hope to see a pattern — something that can be explained or, better yet, treated. In a way it all rests squarely on my shoulders to pick up on a subtle difference in his health.

I was the one who noticed his large leg tumor, and I see the changes in size and the other tumors developing as he grows. The fear is always there: Is this a sign of something bigger happening? Am I noticing what I need to?

I can’t control what path his body is taking, but doing nothing won’t change Colton’s future either. I need to do what I can to make a difference now so he can have a future when things are different.

That’s why we fundraise for research and raise awareness about NF whenever we can.

I don’t know what Colton’s future holds, but I do know that I want a lot more of it, whatever it may bring.

At only 7 years old, Colton has already gone through more than some people do in their whole lives, but he doesn’t know any different. And watching him play hockey, you wouldn’t know it either.