Band of Parents and Grace's Case: a HONY Story

“It was one of the most despicable things I’ve seen in my career. It was ten years ago. There were about twenty families being treated here whose kids had Neuroblastoma. The survival rate was about ten percent. One of our doctors developed an antibody that he thought was promising. But he’d run out of money. So he called a town hall meeting of sorts. He brought all the families together and told them he needed two million dollars. And they told him: ‘We’ll find it.’ We refer to them now as the Band of Parents. These people were desperate. Many of them were broke. And this burden was being placed on them. It made me sick. But they went back to their communities. They baked cookies, and organized bike rides, and held fundraisers named after their children. And they raised the money. All two million. And it worked. Dr. Cheung’s antibody worked. Today the survival rate is sixty percent. But it was so sad. Because deep in their hearts those parents knew the antibody would not be ready in time to save their child. But they raised the money anyway.

A photo posted by Humans of New York (@humansofny) on May 15, 2016 at 5:40pm PDT

(1/6) “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.”

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(2/6) “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.”

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(3/6) “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.” -------------------------------------------------------- You may remember the post from a few days ago that told the story of The Band of Parents, who raised $2,000,000 to fund the development of an antibody. Humanized 3F8 was that antibody. Grace’s life was saved through their efforts. Right now we are holding our own fundraiser to help the team at Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. As you can see, this research saves lives.

A photo posted by Humans of New York (@humansofny) on May 17, 2016 at 1:07pm PDT