- Conan Viernes’ son Tiago was treated for brain cancer at age 2.
- The entire family had to relocate to be closer to Tiago’s hospital.
- Now Tiago is in recovery. This is Conan’s story, as told to the reporter Kelly Burch.
Last week, I celebrated my son Tiago’s eighth birthday. He’s like many second-graders. He loves Legos and robotics. I can’t get the kid to stop reading. He’s the child every parent wants — just an all-around good kid, living a full life.
For years, we weren’t sure what our lives would look like, but Tiago finished treatment in 2017. Now that my son is healthy, I have the time and space to share our experiences and advocate for others going through the hell we went through.
We had to relocate the whole family
Tiago was treated at Seattle Children’s Hospital. That’s more than two hours away from our family home in Yakima Valley, Washington. When a child is as sick as Tiago was, the doctors tell you to stay close to the hospital. The treatment was so intense that we needed to be able to get to the hospital immediately if something went wrong.
So our family relocated. My wife, Geomara, quit her job, while I worked remotely. My stepchildren, Carissa and JJ, who were in third and fifth grade at the time, transferred schools midyear. They went from walking to their rural schools to learning how to navigate the public-bus system in a major city.
It was a lot, but having the family together was worth it. Tiago was still a kid. He wanted to play with his brother and sister. We had Tiago baptized at the hospital chapel before starting treatment. His siblings were there, but when they left he wailed. He just wanted to be with them.
We focused on joy during Tiago’s illness
Geomara and I decided early on to let the doctors focus on Tiago’s illness. We were going to focus on joy. We played games together and explored new parks. We bought special treats like cakes and pudding and had movie nights.
As the parent of a kid with cancer, there’s not much you have control over. But you can control the environment in your home away from home, and you can nourish your relationships.
That doesn’t mean it’s easy. Most days I just wanted to drop into bed. But I knew I needed to spend time with all three of my children. Even when you think there’s no time, you can still find some quality time for your kids.
Eventually I shifted to advocacy
Once Tiago was healthy and we were all back home, I knew I wanted to help other families that were in our shoes. I’m now on the board of directors at Seattle Children’s and also serve as a parent advisor, providing the hospital feedback on policies.
I would love to make it easier for families to connect with others in the same situation. When we were at the hospital, we just happened to meet two families with children who had the same cancer as Tiago. They were a few months ahead of us, so we could see what was coming. We leaned on them heavily for advice and comfort.
Due to HIPAA, making those connections is difficult. It was serendipitous that we met these families in the hall. Of course, it’s important to respect healthcare privacy, but as a parent advocate, I’m working with the hospital to try to develop a system to ensure that parents who want to connect can.
Having a child with cancer means living in a storm of stress and anxiety. You’re existing in crisis mode, and it’s overwhelming. Even these days when Tiago mentions some run-of-the-mill ache or pain, my mind goes to the worst-case scenario.
If you’re the friend or family member of a cancer parent, give them all the grace and compassion you can muster. They need all the support they can get.