Pediatric Cancer

Apr 27

“She came back from soccer practice one day, limping and crying. And we knew something wasn’t right because Grace is tough. The doctors thought it was a pulled muscle at first but when they gave her the MRI, they could see stuff in her bones. They said it wasn’t leukemia, and we thought: ‘Thank God.’ But then they told us it was neuroblastoma. Stage four, high risk-- as if stage four wasn’t bad enough, they had to add an extra label. I was so scared during our first meeting that I put a statue of the Virgin Mary on the table. I thought maybe it would protect us. The doctors started going through the treatment plan. They told us percentages but I didn’t want to listen. They might know about cancer but they didn’t know Grace. So I didn’t want to hear it. Two weeks after the diagnosis, a friend wrote Grace a really nice letter of encouragement. It basically said: ‘I had stage two cancer, and everything turned out just fine!’ Grace folded up the letter, and asked me: ‘Mom, what stage do I have?’ And I told her: ‘Four.’ And she said, ‘How many stages are there?’ I wanted so bad to say: ‘One hundred and fifty.’ But I had to tell her the truth.”

“The radiation was so strong that I couldn’t sit next to her for two weeks. But Grace handled all her treatment so well. She named her new dog after the chemotherapy medicine. She’d walk through the lobby of the hospital, and she’d see kids who’d lost limbs, or had brain surgery, and she’d say: ‘I’m so lucky.’ But when the treatment was over, the doctors did another scan, and nothing had changed. They told me: ‘We’re no longer treating her to cure her.’ In the beginning they were so optimistic. They were telling me about all these options and all this stuff they were going to do. And now they were telling me to give up. And I’m looking at Grace. And she looks OK. She looks strong. She doesn’t look like the girl that I’m reading about in these medical charts. But they’re telling me to give up on her. They’re saying our goal is to keep her as comfortable as possible. Keep her comfortable? What do you mean? What are you trying to say? I’ll never forget that day. The doctor told me: ‘Let’s not worry about this afternoon’s appointment. Go home and have some fun.”

“I wasn’t going to give up. We tried taking Grace to another hospital but they told us the same thing: ‘There’s nothing we can do.’ But then we brought her to Sloan, and they told us: ‘We think there’s one more thing we can try.’ It was an experimental antibody called Humanized 3F8. It triggered Grace’s immune system to attack her cancer. It was so painful. It felt like she was getting a root canal over her entire body. After two rounds of treatment they did another scan. They wanted to see if there was any progress. The therapy was so painful that if it wasn’t working they wanted to stop. They called me in the office to give me the results. They told Grace to wait outside. I was so nervous. I could barely stand. When I walked in, nobody was saying anything at first. I thought: ‘Oh, God. They don’t want to tell me.’ Suddenly they said: ‘This is amazing. It’s never happened before.’ And they held up her scan and the cancer was gone. It had been everywhere: her pelvis, her skull, her bones, her arms. And now it was gone. All of us started crying.”

“I want to be a pediatric surgeon. Our friend Mark is a surgeon and he told me all about it. Being a pediatric surgeon will be hard because you never want to hurt kids. You just want to cuddle them and hold them. But saving them is most important so it’s something you have to do. Also blood doesn’t bother me like it bothers my brother—and he’s sixteen! One time he got blood work done and he was so scared that he curled his toes and his hands. It doesn’t bother me though. I even had my surgeon film my surgery for me because I wanted to see his techniques. When I asked him, he was like: ‘Nobody’s ever asked that before.’ And I said: ‘Please? We can use my brother’s GoPro.’”

“These are my beads of courage. You get a yellow bead for an overnight stay. A white bead is for chemo. A black bead is when you get pricked. And I have two special heart-shaped beads because my heart stopped twice. The first time my heart stopped was late at night. It started beating really fast, and my nurse got very scared, and suddenly ten doctors ran in. They pulled out a big bag of ice and put it on my chest. I was a little annoyed because Justin Bieber was performing at the VMA’s and I had to turn down the volume. The doctors said, ‘Grace have you ever been on a roller coaster? This medicine is going to make you feel like you’re going down a giant hill!’ And they started putting those shock paddles on me. And I heard them tell my mom they were going to stop my heart, and she took out her Valium and started chewing it so it would work faster. Then somebody screamed, ‘Everyone clear!’ And my Mom said: ‘Are you ready Grace? It’s just a roller coaster! Are you ready?’ And then they pushed the shot into my IV and it felt like the world stopped spinning. The machine was going ‘beep, beep, beep,’ but then it stopped. And then nothing. And then nothing. And it felt like a giant boulder was dropped on my chest. And then suddenly my heart started beating again. And I yelled: ‘That did not feel like a roller coaster!’”

“If I was to write a book about this whole experience, it would be called The Town That Saved Grace. So many people rallied around my daughter. There are just so many good people out there. Every time you turn on the TV, it’s always people yelling and fighting. You forget how many good people there are. After Grace got diagnosed, people cooked dinner for us for months. The schools were so supportive. Everyone helped out: the swim team, the soccer team, the fire department, the church. Our church had a rosary for Grace one day and they couldn’t even fit everyone in the chapel. Absolute strangers would stop us in the supermarket and tell us they were praying for us. But the moment I’ll never forget is when we were driving in our car one day, and we pulled over to stop at a lemonade stand. And it was a lemonade stand for Grace.”