Pylocytic astrocytoma was one of the words I introduced in my Day 8 post. It’s the type of brain tumor my son has—benign and slow-growing.
An MRI revealed it when Matt was 11. The doctors didn’t know how long it lay hidden in his brain; it could have been there since birth.
I often wonder if Matt’s inconsolability as an infant was an early sign, or his hyperactivity as a toddler.
I’m sure the tumor was there when Matt was 8, as that’s when he started displaying weird behaviors and having cognitive difficulties.
He’s had it now for over 20 years. It’s inoperable, but stable.
A day, a week, a year. Once it’s behind you, it’s gone and you have only the future before you.
Although I write about my past, trying to make sense of the darkness, I look toward the future, which is bright.
I can’t say my son had a brain tumor. To be accurate, I say he has a brain tumor.
Twenty years ago, when Matt was 11, an MRI revealed the growth, clinging to his brainstem, located so deeply within convoluted folds of grey matter, it is inoperable.
He’s had it for twenty L-O-N-G years.
He’ll have it for the rest of his life.
I hope that’s a L-O-N-G, L-O-N-G time.
Today, May 3, 2018, my son Matt starts a new job.
He’s 31 and has been on his own for awhile, so it may not sound like a big deal, but it is.
It’s a big deal because there were times when my husband Michael and I didn’t know what to expect of our son’s future. You think that way when your child has a brain tumor.
After Matt was diagnosed at age 11 with a pylocytic astrocytoma, we were told he would “bounce back.” Those were the exact words of the neurosurgeon on the morning an MRI answered a question that had dogged us for three years: “What’s wrong with Matt?
The neurosurgeon said that kids with these types of tumors “bounce back.” And we read stories of kids who did indeed bounce back, rather quickly, and seemingly effortlessly.
But Matt didn’t bounce back. His tumor had gone undiagnosed for too long, and the resulting hydrocephalus was severe. We all had a long road ahead of us, still.
Jumping ahead 20 years, and today, Matt starts a really good job, with benefits and retirement and purpose.
It’s a big deal and I couldn’t be prouder.