- Conan Viernes’ son Tiago was treated for brain cancer at the age of 2.
- The whole family had to move to be closer to Tiago hospital.
- Now Tiago is recovering. This is the story of Conan, told to journalist Kelly Burch.
Last week I celebrated my son Tiago’s eighth birthday. He’s like a lot of second-graders. He loves Legos and robotics. I can’t get the child to stop reading. He’s the kid all parents want – just a good kid in every way, living a full life.
I didn’t always know I was going to see Tiago blossom. When he was just 2 years old, Tiago was diagnosed with high-risk neuroblastoma, a form of brain cancer.
For years, we didn’t know what our lives would be like, but Tiago completed the treatment in 2017. Now that my son is healthy, I have the time and space to share our experiences and advocate for others who are healthy. are going through the hell we’ve been through. .
We had to move the whole family
Tiago was treated at Seattle Children’s Hospital. It’s over two hours from our family home in Yakima Valley, Washington. When a child is as sick as Tiago was, doctors tell you to stay close to the hospital. The treatment was so intense that we had to be able to go to the hospital immediately if there was a problem.
So our family moved. My wife, Geomara, quit her job, while I was working remotely. My stepchildren, Carissa and JJ, who were in third and fifth grades at the time, changed schools mid-year. They went from walking in their rural schools to learning to navigate the public bus system in a big 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 in the hospital chapel before starting the treatment. His siblings were there, but when they left he cried. He just wanted to be with them.
We focused on the joy during Tiago’s illness
Geomara and I decided early on to let the doctors focus on Tiago’s disease. We were going to focus on the 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 child with cancer, you don’t have much to control. But you can control the environment in your home away from home and you can nurture your relationships.
That doesn’t mean it’s easy. Most of the time, I just wanted to go to bed. But I knew I had to spend time with my three children. Even when you think there is no time, you can still find quality time for your children.
Finally I switched to advocacy
Once Tiago was healthy and we were all back home, I knew I wanted to help other families who were in our place. I am now on the Seattle Children’s Board of Directors and I am also a parenting counselor, providing the hospital with policy feedback.
I would like to make it easier for families to connect with other people in the same situation. When we were in the hospital, we ran into 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 to come. We have relied heavily on them for advice and reassurance.
Due to HIPAA law, it is difficult to make these connections. It was by chance that we met these families in the lobby. Of course, it is important to respect the privacy of health care, but as a parent advocate, I am working with the hospital to try to develop a system to ensure that parents who wish to connect can do so.
Having a child with cancer means living through a storm of stress and anxiety. You exist in crisis mode, and it’s overwhelming. Even these days when Tiago mentions a pain or banal pain, my mind turns to the worst case scenario.
If you are the friend or family member of a relative with cancer, give them all the grace and compassion you can muster. They need all the support they can get.