My first thought, of course, was my children. I have two daughters, and from the time they were born, my wife and I have been so excited for their future and the chance to watch them grow up. When you get a diagnosis like GBM, suddenly thinking about the future is scary because you don't know what it's going to look like and if you'll be a part of it.
Looking back, however, I would tell myself to have hope—the future isn't such a scary place to consider.
Being honest with your kidsWhen my oncologist first told me about Optune, I knew right away that I wanted to try it. Having young kids, I also knew that they would have a lot of questions. I had to figure out a way to explain the device so that they could understand it and not be afraid of it.
I tell my children that Daddy’s got a boo-boo in his head and this ‘special hat’ is my treatment. My younger daughter has also become my battery helper. When the battery alarms, signaling that it’s low, she gives me new batteries and says, ‘Battery helper!'
As my kids get older, they have new questions, so it's an ongoing conversation that we have as a family. I really try to answer my kids' questions as honestly and as thoroughly as I can so that they always feel comfortable talking to me about it. I don't want my kids to ever hesitate to talk to me about cancer or Optune—or anything for that matter.
Figuring out a way to keep upI realized early on that I couldn't let Optune hold me back from living my life to the fullest. I want to interact with my kids as much as possible, so I had to find a way to do that while wearing my backpack.
When I first started Optune, my youngest daughter was still in a crib and wearing diapers, so getting up in the middle of the night was an adjustment. I’d have to remember to take my backpack with me and just place it down while I took care of my daughter.
With Optune, I can still go on bike rides, walk the dog, and take my family camping. It just takes a little more preparation. I don't like to go on a walk with my family at 3 in the afternoon on a 90-degree day because not only will it cause Optune to overheat, but I also will get so sweaty that I’ll have to change my arrays more often. However, we can adjust and go on walks on the weekends in the morning when it's still cooler—that works best for me.
My kids are really active, and just because I have cancer, they're not slowing down. My mindset has always been that I need to figure out a way to keep up.
Parents: I think the biggest thing to keep in mind when you are starting out is that using Optune is an adjustment. It's okay to get frustrated and feel overwhelmed in the beginning—especially as a parent with young children. I did. I had to start out small, and there was a lot of trial and error to see what works. But now, it is second nature, and with Optune, I feel that I’m doing all I can to fight GBM.
Appreciating the little things
Of course, I still worry. I worry I won’t get to see my kids play sports, graduate high school, and make me a grandpa. But when fear starts to build, I remind myself that all I can do is continue to fight. This diagnosis has made me appreciate the little things in life, and my greatest hope is to enjoy all the little moments now and to witness the amazing humans my kids are already turning out to be.