The Boy in the Basement

This seems familiar. Maybe not to you, but to me. 17 years ago in March 2003. My son Jake, only 5 at the time, had cancer. Our life was all about social distancing. It was not a term at the time but we lived through the same motions that are recommended to us today. We were protecting Jake form the world. For most of the 130 weeks of chemo, we did not go to movies, we did not go bowling or to the library, or to school gatherings. We did not see friends, we missed weddings and bar mitzvahs and totally stopped going to synagogue. He was so fragile, I wanted to protect him at any cost. We did not go on vacation, my husband and I did not go away for a long weekend…everything was a threat to us. I was waiting for the other shoe to drop.

At The Children’s, Jake wore a mask. A little kid with big blue eyes with a giant mask. Who knows what germs were looming about? I did not let him touch the elevator button, even though he asked. I did not let him eat on any of the hospital plates when they delivered his food, I did not let him eat any of the baked goods that families dropped over for fear that they may have been sick when they prepared the food. He did not go to school, he missed school plays, outings and math class, he missed gym and running around with his friends. Even when we went to the park, he wore gloves when he played on the equipment and never was allowed to play in the sand. As soon as the crowds arrived, we would head home.

I felt alone. No one understood and I found myself thinking how lucky everyone else was to have their kids’ freedom in their hands. I had so little control over the medicine working that I wanted to do what was in my control to protect him. He was so little and I knew his immune system was compromised from the chemo.

Then came the neutropenia. Quarantine. Isolation. Words I have not spoken in 17 years. Words so foreign to me at the time - and so familiar to me again today. A new way of life for our family. His younger sister and older sister had to stop going to school. He could not even interact with his new baby brother. We were in the hospital for almost 2 weeks and I was the only one allowed to see him. We spent countless hours listening to Hillary Duff and coloring and playing with a sterilized set of Polly Pockets or an alcohol-washed puzzle. We baked cookies, we chatted, we watched movies on a giant sterile television we would wheel in from a room reserved for the neutropenic kids.

When Jake was finally allowed to go home, he was totally isolated. His little friends would come over to see him through the window where he would wave frantically and yell outside the screen to them and giggle. They would leave toys or rocks at the door that we would collect and clean after they left. This was his reality. He was doing great. I was not. This was too much to bare, but this is what I needed to do to protect Jake. From the world. It is like I had these glasses on that saw danger in so many things that were normal to others. My viewpoint had changed and was skewed by his leukemia.

Jake is now 22. And last Monday, almost to the day of his leukemia diagnosis, Jake came home from Los Angeles, where he was making his way as singer/songwriter. The other shoe has now dropped. But this time, because he had travelled back home, he was now a potential threat to us. My own son. The one I protected from the world, the one whom I shielded from danger, was now the danger to us? I cannot not make sense of this.

Quarantine. Isolation. Again. But this time, it looks so different. We are no longer alone. We are all united by this. We are all in the same boat. I cannot feel sorry for myself or ask why because I am not the only one suffering. I am rule follower and that is the only way I gain perceived control of a situation. So here we go. Jake is the boy in the basement. The same exact 2 weeks he spent in isolation when he was 5. Now at 22. I cannot hug him. I cannot hold him. I cannot watch a Hillary Duff movie with him on the couch. We went for a walk and he stayed across the street. We leave his food on the stairs on paper plates and cups. Thankfully he has no symptoms but this is precautionary, like it was last time.

So… if I can separate my family temporarily for the greater good, you can do your part to stay home. Isolate yourselves with your family, if you are so lucky to be with all of them. Friends will wait. Work will still be there in one form or another, social gatherings will happen eventually. I lived though it once and I can do it again. The outcome 17 years ago has been so magical: Jake is a beautiful, healthy, talented and brilliant human being. I did my part. I am doing it again. Now it’s your turn.