How I Survived … My Son’s Rare Blood Disease

Gus Quinonez of Rossmoor, on his son’s hope for a full recovery and a normal, active life

My son Kai has aplastic anemia. It’s bone-marrow failure—white blood cells, red blood cells, platelets, all of it just stops—and one cure is a transplant. But that’s risky: The survival rate is only about 70 percent, and if it doesn’t take, you lose your child. So you do everything you can before you go to transplant. 

You want to become strong and educate yourself, and you don’t want to let your child know how scared you are. Every single moment I was alone—I was breaking down, just crying. People would ask how he was, and they would have the look that you don’t want to see. One benefit of this day and age is that you can text or email. Because I couldn’t even talk. I couldn’t tell people about how sick he was, or what his chances were, or any of that, so I would just text and say, “I’m sorry,” and they understood. And then, going back in the other room and trying to act like everything’s OK in front of Kai … I worked hard to hide it, but he could tell I was just broken down inside.

Throughout all of this I was trying to be there for my other son, Klaus. But you’re trying so hard to save one life that you just … you would just … unfortunately, you wouldn’t … it was hard. You have to be a provider.

Kai went from being an active kid to having a port-a-cath, getting transfusions, staying at the hospital, 2½ years of going in for platelets and blood, sometimes weekly, sometimes every three days. For that whole time, nobody in our family smiled.

We’d done two rounds of chemo and we were close to trying the bone marrow transplant. Then, all of a sudden, his numbers started coming up. He stopped being transfusion-dependent, doctor visits went from every couple of days to every week, and now we’re at six weeks. He’s been released to ride a bicycle, and he did Junior Lifeguards this summer. 

He looks like a healthy 11-year-old. He’s full of color, whereas before he was so pale, bruised all over, and always bloody, because his nose bled constantly for two years. 

We’ve started a race—an annual run in Los Alamitos—to raise money for local schools because they have done so much to help Kai during all of his time in the hospital, like sending teachers to his room on their own time to help him study. We’re trying to teach Kai to make something positive out of all of this.

I started working out again. I probably put on 25 to 30 pounds when he was in the hospital, because I didn’t want to leave his side. I’d go straight there after work. At night, when he was asleep, I’d do laps around the building. I got to know people—the guards, the people that work at the coffee place—and they’d say, “You’re still here?” And I’d say, “Oh yeah.”   

For the first time in over two years I can talk about it without breaking down. This summer, during junior ’guards, we saw him running up and down the beach and swimming, and I was just in tears. Just watching him swim … my wife and I … we were just elated.

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