Pediatric Cancer

Apr 25

“This was the bench we sat on the night that Avi had his biopsy. He had been making weird breathing sounds. The pediatrician sent us here because she saw something on his X-ray. Avi was eleven at the time. I didn’t want him to feel scared so I told him it was just a silly little test, and we’d be going home soon. I walked with my back against the wall to hide all the signs that said ‘cancer.’ They took Avi in the back and we waited on this bench for a long time. It was Friday night and the place was empty. It started getting late. It was taking too long. When the doctors finally came back they looked very scared. The doctor told us, ‘We’re having a difficult time keeping his airway open.’ I was so confused. This was just supposed to be a test. I asked him: ‘What do you mean?’ He said: ‘Avi could die.’ He kept repeating it: ‘Avi could die.’ Then he said: ‘It’s time to pray.’”

“They finally got Avi breathing through a tube. The anesthesiologist cried when she saw him alive again. She said it was the scariest moment of her career. That night we parked our car in a 24-hour garage. We didn’t move it for five weeks. We slept head-to-toe on the bench in his room. I stared at those monitors non-stop. They told us Avi had Acute Lymphoblastic Leukemia. The tumor was too big to remove so he began 25 months of chemo. Everything went wrong. Complication after complication. The ‘worst case scenario’ happened so many times that we began to expect it. He had over thirty surgeries. They completely removed his esophagus. He couldn’t eat for nineteen months. And he couldn’t talk for seven months-- not a whisper.”

“I can’t tell you why this happened to my son. He was so healthy. He was at the top of his class. He was a great athlete. I used to watch him play sports and think: ‘I can’t believe this is my son!’ And he was so nice to the other children. Other parents would send us letters and gifts because Avi was so kind. He’s just so good. But they all are. You look around this place, and you don’t see any serial killers. These are all good people. These are not the people screaming at their kids in Target. One day during chemo, when his hair started to fall out, Avi turned to me and said: ‘I think I know why this is happening. I made fun of somebody at school one time.’ And that just broke my heart. I can’t describe what it felt like to watch him suffer. It was torture. I used to lay with him in bed at night and wish so bad that it could be me instead. I’d do anything to switch places with him. One night when he was really hurting, he told me: ‘You can’t understand what I’m going through, Dad.’ And I told him, ‘Trust me Avi. I can.’”

“Mark is such a good man. He’s the most dedicated father and husband you can imagine. He never spends money on himself. He never thinks of himself. He only cares about what the family needs. He helped start an organization that raises money for widows. He worked so hard on it. He went from synagogue to synagogue, asking for money. Yet he still thinks that all of this is his fault. He thinks that I’m pretty much perfect, and Avi is pretty much perfect, so it must be his fault. He couldn’t sleep for months after the diagnosis. He would be up for all hours. He spoke to so many rabbis and mental health professionals. He gave away all his possessions. He’d always tell me: ‘I know I’ve done something wrong. We’re being punished for something I did. And I don’t know what it is. But I’m so, so sorry.’"

“This is our last day of treatment.”

“Whenever I saw my parents sad, it always made me a little more nervous. Like when I asked my mom how long it would be until I could eat again. And I said: ‘Ten years?’ And she shook her head and said, ‘Not that long.’ Then I said, ‘Five years?’ And she started crying. I do feel sorry for them. They are the best parents in the world and it’s very hard for them. You know, me not being quite who I used to be. I don’t have my full voice back. I haven’t done much physical activity in the last two years. They were always very proud of me. I think they’re still proud of me now but for different reasons. A lot of adults tell me that I’m more mature than a lot of eighteen year olds. Because I know that life isn’t just happy times, and now I know how to handle it.”

“I’ve thought about what I would say if I could go back in time, and talk to myself before I got cancer. I’d say get ready to not be who you are right now. And get ready to deal with a lot of disappointments and pain. And just keep strong. And never give up. And don’t lock yourself in your room if you get sad or angry. Because nobody can help you if you’re in your room and the problem will get worse. And stop fighting with your brothers and sisters. Because you’re really going to need them soon and they are going to help you so much. And keep watching sports. Because those are really going to cheer you up.”