Fight for a Cure With Stony Brook Children’s Hospital

In 2014, Dina Isola received news no parent ever wants to hear: Her 10-year-old son, Joe, had cancer. The next few moments were a blur, but Isola remembers hearing that is was Hodgkin’s Lymphoma and it was curable.

After a second opinion from Sloan Kettering confirmed the diagnosis, the Isola family decided to have Joe undergo chemotherapy and radiation at Stony Brook Children’s Hospital. Isola spoke about her family’s decision to use the hospital, which is the beneficiary for Long Island Pulse Magazine’s North Fork Summer Social Sunday, Aug. 6, and how Joe is doing now.

Tell me about what prompted you to have Joe examined.
It was frighteningly unremarkable. He was never sick. One morning he woke up and said, “Mom, I have a lump on the side of my neck.” We took him to the pediatrician, who put him on some antibiotics. It started to go down after a couple weeks but it was still there. They said they’d monitor him and have him come back in a couple weeks. We were away and looked at his neck. It was almost as if he read my mind. He said, “Mom, it’s feeling bigger.” I got him right in when we got back to New York New Year’s Eve. The pediatrician measured it and saw it was bigger. He was scanned right away. The next thing I know we were at Stony Brook Children’s Pediatrics Hematology and Oncology. The sent him for a biopsy.

What went through your head?
I was so convinced he was healthy that to be honest with you, it was so jarring that my instinct as a mother was so wrong and off. I went from caring what I was thinking and feeling to data. What category was he in? Where is it in his body? I wanted it out like yesterday.

How did Stony Brook help in those initial days?
A good friend of mine happens to be an ER physician and I said, “Will you come with us? I feel like I’m going to be beside myself and miss questions.” She came and she was so impressed how warm and inviting they were to her. She said sometimes people aren’t receptive to letting people sit in on exams. She even said, “If you don’t go for a second opinion and choose them, I would get it.” But [Stony Brook] knew as a mother that I had to make sure he was being treated where he needed to be treated. Dr. Rina Meyer got us into Sloan Kettering the following day when I told her where I wanted to get a second opinion. The top [doctor at Sloan Kettering] was telling me she [had been] the chief resident [at Sloan Kettering] and trained them. They gave me advice on how to break the news to my son.

How did you break it to him?
I didn’t let time pass. I got the news on a Friday and I told him when he came home from school. I couldn’t conceal it. We led with the fact that it was curable…His first question was, “Am I going to die?” It was a legitimate question [especially since we had just had a family member die from leukemia]. We said, “We’re not lying. It’s curable and we’re going to get through it.”

What was the staff’s interaction with Joe like?
He was a child in an adult world and they understood that. They answered his questions. They looked right at him and started the conversation with him. They gave him a degree of control in an uncontrollable situation. It’s brilliant because once the child calms down and feels heard and respected, the parent calms down too. He knew that when they could be flexible, they were. When they said, “Sorry, you have to take this pill right now,” he knew they weren’t just strong-arming him.

How did Stony Brook help you get through chemotherapy?
They explained everything. They told us what was normal and what wasn’t because all you can control is your response to what he was exhibiting. I literally felt like my brain was going to explode. It was like they knew that’s what was going on in your head. They didn’t lump everything on us all at once because all I wanted to do was cry. They were good and patient.

I heard Dr. Rina Meyer and Joe had a bond. What were memorable things she said or did for him?
She said, “This isn’t just treatable it’s curable. I’ve worked with patients with this before. We’re going to get you back.”

Cancer is tough on the whole family. What are some services they offered that helped lessen the load on you, your husband and Joe’s twin brother Anthony?
Child Life Services was wonderful. They had fun things for Anthony to do too which was important because so much attention was on Joe. Anthony is a huge basketball fan. They helped get tickets to a Stony Brook men’s basketball game. As a family, they helped us coordinate with the school. I didn’t have to think about getting him a tutor. They went into both boys’ classrooms and explained to the kids what was going on—why Joe wasn’t coming back to school. That was helpful to Anthony because it made it so he didn’t have to tell the story 10,000 times.

How is Joe now?
He’s doing really well. He’s due for his regular checkup next month.

What is your relationship with the staff?
Joe goes there every three months. I’m on a parent advisory board [with other parents who have] been through the hospital. We spoke with the residents about breaking bad news to patients. We told them what was helpful, what was not.

Why is it so important to support Stony Brook Children’s Hospital?
It’s important for people to understand what is going on up there is huge. They’re dedicated, smart and tireless in trying to cure these cancers. There’s no ego up there. If they can’t do something, they’ll direct you elsewhere.

Support Stony Brook Children’s Hospital at North Form Summer Social Aug. 6.

beth ann clyde

beth ann clyde

Beth Ann Clyde is a social strategist of Long Island Pulse. Have a story idea or just want to say hello? Email bethann@lipulse.com or reach out on Twitter @BAClyde.