Ep. 95: Shining a Light: Childhood Cancer Awareness with the Phillies

On a single night each September, Major League Baseball holds Childhood Cancer Awareness Night at games nationwide. This major initiative focuses on both educating the public about childhood cancer and providing respite for cancer patients, survivors, and their families. 

Join us as we visit Citizens Bank Park - home of the Philadelphia Phillies - for the 2024 edition of Childhood Cancer Awareness Night and hear about one family's ongoing battle against childhood cancer. We'll also talk with a representative of the Phillies organization about the history and purpose of this effort and the partnership forged between the Phillies and Nemours Children's Health, the official children's health provider of the Phillies. 

GUESTS:
Michele DeVicaris, Phillies Director for Community and Charity Events
Eric Newton, parent of cancer patient Eric "EJ" Newton
Onilisha Newton, parent of cancer patient Eric "EJ" Newton

Carol Vassar, host/producer

Views expressed by guests do not necessarily reflect the views of the host or management.

Subscribe, review or let your voice be heard at NemoursWellBeyond.org.

Transcript

Announcer:

Welcome to Well Beyond Medicine, the world's top-ranked Children's Health podcast produced by Nemours Children's Health. Subscribe on any platform at nemourswellbeyond.org or find us on YouTube.

Carol Vassar, host/producer:

Each week, we're joined by innovators and experts from around the world exploring anything and everything related to the 80% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar, and now that you are here, let's go. Welcome to the City of Brotherly Love.

Amtrak Conductor:

Ladies and gentlemen, our next station stop is Philadelphia 30th Street, Station Philadelphia. Have a good day. Once again, Philadelphia 30th Street.

Carol Vassar, host/producer:

As the official children's health partner of the Philadelphia Phillies, Nemours Children's Health and the podcast team are at Citizens Bank Park to join the Phillies, the Starlight Children's Foundation, and Stand Up To Cancer for Major League Baseball's Childhood Cancer Awareness Night.

It's happening at MLB Parks across the nation on a single evening, September 1st. This event centers on providing community education about childhood cancer to fans in attendance and allowing cancer patients and their families to have a bit of a distraction from their treatment by having some fun participating in our national pastime.

In a little while, we'll hear from a family whose 14-year-old son is battling cancer. He's throwing out the ceremonial first pitch at this game, which is versus the Atlanta Braves. With me right now, though, is Michelle DeVicaris, Phillies Director of Community and Charity Events. Michelle, welcome.

Michele DeVicaris, Philadelphia Phillies:

Thank you so much for having me.

Carol Vassar, host/producer:

This is quite a massive undertaking. At Nemours, we've been talking about this for months and months, perhaps even since last year's event. Give us a preview of what folks will be experiencing this evening at Citizens Bank Park.

Michele DeVicaris, Philadelphia Phillies:

So basically, what we try to do with this night is it's to celebrate the kids and the families that are impacted by this and to take them out of what they're currently going through. And this is just a night to have fun, enjoy, be together as a family. That's always our goal when it comes to a night like this, and we want to honor these kids as well.

So basically, anything that can happen at the ballpark, we have one of our kids who are either battling, are currently in remission, or are survivors as part of the pregame. So, we're going to have our Lineup of Courage, which is ten kids that we put right in front of the Phillies dugout. We introduce all of them. They will stand out there. The players will then come out and meet them. They'll be out there for the national anthem.

So basically, they're standing along with the players as we are all one team in this fight, and that's basically the theme of the night. No matter what we do, we're kind of all in this together. We're here to support you. Even if you are lucky enough to not be directly affected, you're still there to show your support.

We'll also have a little girl doing what we call a Ceremonial Home Run. We won't actually pitch to her because we don't want her to have to worry about actually hitting, but we'll give her a bat. We'll ask her to swing, and then she's going to run around the bases. She'll high-five all the Phillies on the first base side. Bryson Stott is going to be standing at second base, so she'll high-five him as she goes around; when she gets to third base, all the Atlanta Braves will be on the third base side, and she'll come all the way home, and Trey Turner will be waiting for her at home plate.

So, we're all going to stay out there. We'll do the National Anthem while also all this is going on, we have our large, gold, yellow ribbon out in the outfield, and that is being held by Nemours employees, by Phillies employees, by families who have been affected. We have two families who, unfortunately, have lost their children  are going to be out there. So, we have support staff from some of our other kids that are a part of our Phillies family.

So, it's just, again, it's all about we're all here together. We're here to support you, the families, the kids, anyone who's impacted. We'll have two kids doing our PA and announcing the starting lineup. So, they're going to kind of take over for an inning on that. We have a guest DJ. Anybody that comes here and knows the music is always going, we put them up there with our DJ for an inning, and they get to help pick the songs or play the players at bat songs or walk-up songs.

We'll have The Phanatic involved, of course, always has to be involved. We'll have a kiddo doing a skit with The Phanatic in the fifth inning, and then we'll have a couple kids dancing with The Phanatic in the seventh inning. And then, of course, from the National Anthem, God Bless America, and Take Me Out to the Ballgame, all kids who are, like I said, either currently battling are survivors, are in remission, every aspect of the game tonight will have some child who's been impacted.

Carol Vassar, host/producer:

And this is a family night for those who are dealing with cancer in their family. It's also an educational evening for those in attendance. Talk about that portion of this.

Michele DeVicaris, Philadelphia Phillies:

Yes, MLB calls it, and we call it Childhood Cancer Awareness Night. So, we want people to be aware of what it looks like. Hopefully, you never have to face that type of diagnosis in your family, but you'll see it does not discriminate. It has nothing to do with age, demographic, anything, and you'll see the different faces of what it is. So we want to raise the awareness, not only just have it be for the families, but again, show fans who maybe never had experienced it, lucky for them, but maybe it'll kind of open their eyes a little bit.

Maybe they'll make a donation. 50/50 is going to the Nemours Foundation. Maybe that'll entice them to go out and buy a 50/50 that maybe they weren't necessarily going to do. Just little things like that. We just want to show the spirit of these kids and their families, but also, again, the awareness of be grateful for what you have. Be thankful for what you have, but also it can really happen to anyone.

Carol Vassar, host/producer:

You mentioned MLB, the Phillies have been doing this for years, MLB, this is now a league-wide initiative. Why is this so important to both MLB and the Phillies to raise awareness?

Michele DeVicaris, Philadelphia Phillies:

MLB is great about the initiatives that they asked the teams to participate in, and every team who is playing on September 1st is having an awareness game like this. MLB made a commitment years ago to not only raise awareness but help with funding for childhood cancers. Again, as you know, it's not one type of cancer. It's a very complex situation when it comes to pediatric cancers.

So, to help raise awareness and raise funding, it's estimated that approximately 10,000 children this year, under the age of 15 will get a diagnosis. And while treatment and research has come a long way, it still needs to go even further. And that's why MLB has made that commitment. And what better platform than professional baseball with the fan outreach that we have? And we got lucky tonight that we have The Braves in town because it's a huge rivalry, it's a big game for us.

And we're on ESPN tonight, so everyone in the country who's watching is going to see how important this is to not only Major League Baseball but to the Phillies and the Braves.

Carol Vassar, host/producer:

Now, the partnership between the Phillies and Nemours is really a powerful example of how sports organizations can leverage their various platforms, from being on ESPN, their social media, their website, and just their games in general, to inform and educate the public about a variety of significant health issues including childhood cancer. How did this partnership come about between Nemours and the Phillies?

Michele DeVicaris, Philadelphia Phillies:

So it's been about a decade. We met with executives from Nemours and wanted to learn what they would like to see in this sort of partnership with the Phillies. How could the Phillies use their platform to help Nemours? After conversations and learning about objectives and goals, we started off slow and did a few things here and there, but then the relationship grew over the years to the point now where we call Nemours Children's Health the official children's health partner of the Phillies. So, it went from just small little goals and objectives and continue to build throughout, and it's been over a decade that we've had this partnership.

Carol Vassar, host/producer:

How have the fans reacted to the partnership?

Michele DeVicaris, Philadelphia Phillies:

It's been very well received by the fans. I think it's important that we show that it's not just about what happens on the field. So by partnering with Nemours, it's shown that there's a meaningful extension of our efforts to make a positive impact beyond what is happening on the baseball field.

Carol Vassar, host/producer:

And it's a year-round effort. Talk about what happens outside of baseball season or maybe outside of a game that the Phillies and Nemours are doing together to raise awareness and maybe help alleviate some suffering.

Michele DeVicaris, Philadelphia Phillies:

So as I said, we've built on it over the years. So now we have Nemours sponsoring our opening day, which obviously is a huge game. Opening day of the baseball season the past couple of years has been sponsored by Nemours Children's Health. We do kids run the bases a few times throughout the season post-game, where kids get to come on the field and run the bases. Nemours has sponsored that for us as well.

And then, we also host a family day for Nemours at the ballpark. There's discounted tickets for the associates, there's an opportunity for a first pitch, and then other in-game activations. Then sometimes we come to you at the hospital. Over the years, we've brought players to visit some of the kids. There's been the Phanatic appearances. We have the Ball Girls there. We do an opening day pep rally. We were just there on Thursday. There was another pep rally. I was there as well. I brought Johann Rojas to visit the oncology ward and the rehab center. So sometimes we come to you, sometimes you come to us.

Carol Vassar, host/producer:

We're sitting here in Philadelphia. The partnership between Nemours and the Phillies is very important to the city of Philadelphia and the surrounding area. In what ways do you see this partnership impacting Philadelphia, Pennsylvania, Delaware, Wilmington, which is not far?

Michele DeVicaris, Philadelphia Phillies:

So, I think it elevates the awareness of Nemours amongst our fan base. When you think about a hospital and a baseball team, you don't think there's a lot of cross there, but you'd be surprised. So I think it brings in fans, maybe; Nemours has patients from all over, so maybe they're now aware of the impact that baseball can have, and we bring them to our ballpark.

Like I started this off with, we want to be there to take them away from everything that they're going through, be a couple of hours of just enjoying something. Maybe these kids have never been to a game before, but now we can help them with that.

Also, from a Phillies perspective, we have fans in the areas you just said maybe they weren't aware of the connection we have with Nemours. If you're a Delaware resident or a resident closer to where the hospital is, maybe now that draws attention to our fan base that there is this option just outside the city. It's only a half an hour. It's right down 95, doesn't take that long to get there. So, I think it helps align our brands to make a difference for children, for families, but also, again, when we have you guys come here, it helps take you out of the hospital setting, and here's an opportunity where maybe you can forget about all that for a little while.

Carol Vassar, host/producer:

As you examine the partnership from the inside being with the Phillies, what can other organizations learn from this partnership?

Michele DeVicaris, Philadelphia Phillies:

Well, I think it leverages the visibility of good causes. Sports have a huge platform, significant visibility, and influence. So why not use that platform to bring attention to different causes and different awarenesses? Again, like tonight, it can promote a meaningful change in that respect, but then also it engages fans beyond the game, what I mentioned before, so much can happen off the field.

What we do on the field isn't necessarily only what we're about or what a team is about. So, by partnering with organizations like Nemours or similar, you can engage fans in different initiatives and different fundraising. Again, tonight a fan might just be coming to watch the Phillies and the Braves, but they're going to buy that 50/50 ticket and that money is going to go to Nemours, the foundation.

So, I think the crossover is there, and it shows what can happen outside of the field, the court, the ice, or whatever it might be. And then again, as I said before, these kids are our future fans. So, we want to see them grow up. We want to see them come here and boo. We want to see them come here and cheer. We want all aspects of it. So, it helps us to have Nemours as our partner because they're getting those kids healthy. Those kids are coming to support us, and they're going to be lifelong fans, hopefully.

Carol Vassar, host/producer:

Well, I know you have a busy evening ahead of you. A busy, exciting evening. I'm going to let you go. Michelle DeVicaris is the Community and Charity Events Director for the Philadelphia Phillies. Michelle, thank you so much for joining us.

Michele DeVicaris, Philadelphia Phillies:

Thank you so much for having me. This was great and we're really looking forward to tonight. It's going to be great.

Carol Vassar, host/producer:

It is. Up next, a local family shares their story of courage and strength as their fourteen-year-old son undergoes the fight of and for his life. Joining me right now are Onilisha and Eric Newton. Their fourteen-year-old son, EJ was diagnosed with cancer a little over a year ago. Welcome to both of you. I'm wondering if you can take us back to right before the diagnosis. What were the indicators to you that something wasn't quite right with EJ's Health?

Eric Newton:

Well, it started out at his last day of sports camp. He was playing soccer and had a sharp pain in his hip, and he was unable to keep running around. This pain lingered on and off over the next couple of months. We got him checked out first through Telemed, and then, in the second round, they did just like a range of motion testing at the pediatrician's office. And then they sent them for X-rays; x-rays showed what they thought initially was a cyst, but to make sure, they actually sent him for an MRI. And then, from the MRI, there was a biopsy that confirmed the cancer diagnosis.

Carol Vassar, host/producer:

And what's the exact diagnosis here?

Onilisha Newton:

Ewing sarcoma.

Carol Vassar, host/producer:

Ewing sarcoma. How did you process that news, Onilisha?

Onilisha Newton:

Initially I went numb when I got the phone call. I think initially also I was in denial. It was hard to fathom that my child had cancer. It was almost like a Charlie Brown moment where you just hear "Womp, womp, womp, womp, womp." It was just a sack of bricks, just like the house fell on me. Everything just kind of blacked out for me. I couldn't process it initially. It was more questions initially than anything, than answers. So first hearing the news, it was really devastating.

Carol Vassar, host/producer:

Eric, was it the same for you?

Eric Newton:

Pretty much. I went into a research mode, which was difficult because everybody that I was talking to in the medical field was saying, "Whatever you do, don't Google. Talk to the doctors, save your questions for the doctors, they'll be able to give you specific answers." But you're trying to pull up as much information as possible, and then your mind starts to wonder. You start going as a parent, "What did I do? Is it anything that I did?" Or stuff like that? And then I immediately got into protection mode.

It was game on, "All right, what is it that we need to do to help him come through this and to make sure that life stayed as normal as possible." It was the middle of the school year, so that part aside, you want him to still be able to participate with his friends and stuff like that. So, I had a lot of that going on in my mind. "All right, what does the treatments look like at his age? Where do we go from here, from the diagnosis point?"

And the team at Nemours were very, very good at being transparent and also very aggressive and fast-moving with his plan and developing a plan and road map and a lot of oncologists that we met a lot from pretty much the 1st of March. So, about two weeks after his diagnosis.

Carol Vassar, host/producer:

Having cancer is challenging for a family. How did it change your lives?

Onilisha Newton:

It changed it to a sense of... Initially, it changed it, but things kind of came to an abrupt halt, I would say, because I did not knowing what to expect. Obviously, we had never been through this before, so it was very new to us. So now what's next? There were a lot of things coming at us it seemed at the same all at one time.

And how do you effectively process it? So, at the onset, it was difficult, but you learn quick. You have to because this is your child that you're talking about. So it was like that said: meeting with the oncology team. Once the diagnosis was confirmed, now we can chart his course of action, what his treatment is going to look like, his road map, his phases, how many days, things of that nature, his medication, all of that now comes at you and it's like full steam ahead.

There is no pumping the brakes at all. So initially, it was hard, but once we got through, I would say his first couple of treatments, as far as chemo was concerned, it was like second nature. Now we knew what we were up against, now we're able to follow the road map. Everybody was available there for any questions that we had. Very supportive. So it's been, although the circumstances aren't good, it's been good in a sense of what's been going on and how he's doing currently. I couldn't ask for a better team.

Carol Vassar, host/producer:

How is he doing currently?

Onilisha Newton:

He's doing good. He's doing good. He's, I want to say, acclimated now. He's adjusted very well. Initially, of course, it was hard because this was something new for him, something new for us. The medication initially took a toll on him in the beginning. He was very withdrawn in the beginning, so that was difficult in seeing your child go through that and internalizing it in his own way. So that was very difficult. But now he takes everything head-on. He just does it, and his strength is amazing.

Carol Vassar, host/producer:

How have the two of you supported EJ as this has all been happening, Eric?

Eric Newton:

Just being there for him, really. With him being 14, I believed in full transparency with him. So, he's in there pretty much when the doctors are talking to us about what's coming up, we discuss any changes or any things that we're doing differently than what we did before. Gets discussed with him right away or with him in the room so that he's not surprised, and nothing is really catching him by shock value.

If he has any questions, we're there for him. We just had to roll up our sleeves and really just make sure we were there for him. Like I said, try to keep everything as normal as possible. He was used to being in three football leagues a year, and he was unable to participate. So that was a big blow to him. So, making sure he still got to be around those friends when he was not in the hospital.

He had a good group of guys that would come see him when he was in the hospital, especially initially when he was down a little bit, and you could tell he was missing the group but made sure he had his Fortnite and Roblox and things of that nature to kind of keep that form of normalcy with him. And now he's turned into a movie buff. So, we go to the movies a lot and try to catch him up on some of the old classics at home and things like that. So, it has been more of a thing where open conversations have led to a different phase of our relationship.

Carol Vassar, host/producer:

Would you say it's a more mature relationship?

Eric Newton:

Yes. He's getting ready to start ninth grade or ready to start high school. So, the conversations are different now. And when anything gets asked of him about his treatment or about medications, if I say anything wrong, he can correct me, which is good to hear because he's kind of an introvert. So, you never know if he's listening and paying attention or not. But when you hear him chime in with things or answer questions on his own, that's a big piece. It shows a different level of maturity, which I'm enjoying the ride for.

Carol Vassar, host/producer:

It sounds like you are all on an even keel, emotionally and mentally. How have you been able to maintain your emotional and mental health, both as a family and as parents, as individuals?

Onilisha Newton:

I would say for me it's been a lot of prayer, a lot of prayer and just our faith, it's not about questioning because initially that's what you want to do. You want to question God, "Why? Why my child, why us? Why not us?" Everything happens for a reason, and I know if he brought us to this, that he'll bring us through this. So, it's been a lot of prayer, and EJ will be victorious in the end, and that's what I hold on to, that this is just a speed bump, but there's a light at the end of the tunnel.

Carol Vassar, host/producer:

What kinds of support have you found with family and friends? Onilisha, you mentioned God, church, and faith. What kinds of support have you found there and within community resources?

Onilisha Newton:

Yeah, it's been really good. It's been interesting, especially on the forefront; the resources, the support was just coming. It was like somebody opened up the floodgates. It was really, really a lot of stuff coming out at one time. And the support that's from, not just from the hospital, but from the social worker, from the child life specialist, the psychologist.

You've got the oncology team. So, you have those folks there at the hospital, but then you have extended folks on the outside that hear like, "Hey, I heard you guys are going through this." People who have gone through it before. So now they're able to pay it forward and say, "Hey, look into this organization, look into this foundation. They offer this type of support."

And it's just been phenomenal. Still, to this day, either the ones that I signed him up for, he gets mail from total strangers, cards, gifts. It's amazing.

Eric Newton:

His Angels.

Onilisha Newton:

His Angels. Yeah, his Chemo Angels, they're called. And it's phenomenal, the resources that are out there, you'd be surprised who's out there, what's out there. It's just a matter of not just doing your own due diligence and doing your own homework, but you have other people who are looking out for you as well and are willing to help you in any way that they can.

Carol Vassar, host/producer:

What has been, for your family, the most challenging part of receiving this diagnosis, Eric?

Eric Newton:

So I would say initially just all of the questions that we had, not knowing what everything was going to look like in the beginning. That was very challenging. And then mom and dad work, and we need to work. So, being able to work around his schedule, his treatment schedule initially was just chemotherapy, and then it evolved into chemotherapy and radiation, which his radiation was Monday through Friday for six weeks.

And that was on top of chemo, which would be two days, one week, and then a space of two weeks, and then it would be five days of chemo, and it continues to alternate like that. So, being able to work to pay the bills and still kind of come together to give him everything that he needs in regards to support was a big thing. But a lot of times, what I found was I would get some of my strength from him because he didn't complain about anything.

He would take everything in stride as it would come to him. This is a kid that was never under anesthesia until he got his biopsy in the beginning of his diagnosis, and that was his first surgery. So, no complaints, a little worried in the beginning he was, but he quickly grew out of that. So as I saw him becoming stronger, it forced me to be a little bit more solid and to at least know that I had to be there for him to lean on in case he would need it because he would never really ask for help. But you have to know your child and when to be able to provide that for him.

Carol Vassar, host/producer:

If you had a parent here or a set of parents here who received a similar diagnosis yesterday or today, what would you say to them? What advice would you give them? How would you support them?

Eric Newton:

I definitely would tell them to open their minds to really embrace all the options that you'll receive from the oncology team. Listen, be prepared, carry your binder, carry your Nemours bag with you to your initial appointments because you're going to need it. It's going to be a lot of information coming, a lot of homework. They actually provide you with the information that you need so that you don't get false leads or any false information from the internet or outside sources.

But really, really just keep your child and their wellbeing to the forefront. And it is hard leaving the care for your kid up to somebody else, but look at their track record, open your ears up to everything that they're talking about and everything that they offer. And just remember, at the end of the day, nobody's there to do any harm to your child. They really just want the best for them.

Carol Vassar, host/producer:

Onilisha?

Onilisha Newton:

I would just say to other parents it's not a blame game. Initially, I think that's what you want to do, blame... these things happen. And it's evident just from tonight, you can see how many kids. You really don't realize it. I would've never fathomed that my child would have cancer. There's no one in my family, as far as kids are concerned, whose child has cancer. So, this is a first in my family, I never would've thought of it in a million years.

So, it's hard when you hear that, but you pick up the pieces, life goes on, it doesn't stop. And no one is exempt from life. So, this is a part of what he has going on, or we have going on, and we are doing the best that we can. And I think we are doing a good job with our team of folks, family, friends, the hospital, the nurses, the staff, the doctors, everybody.

I think we're all collectively, it takes a village. So, we are all collectively in this together, and we are going to, like I said, he's going to come out victorious on the end. I believe that. I believe that. So, for parents, just hang in there, just hang in there, it does get better. It does.

Carol Vassar, host/producer:

What's the prognosis now, and what do you see in EJ's future, Onilisha?

Onilisha Newton:

The prognosis now...he just finished up radiation maybe a few weeks ago, so now he's in his third phase of treatment, which consists of chemotherapy. From his current roadmap, it looks like he's done the beginning of October, so not really sure right now what's the next step after that, if any. He still has to get another MRI done, and I think they have to wait a certain amount of time after he's done radiation, and it's been about three weeks or so before they can do an MRI.

So that will tell us where the tumor is now as far as the size of it, if it's been totally eradicated, right, fingers crossed. So that's where we are right now. We're kind of still in limbo. He's still getting his treatments, his chemo, but in due time we'll be able to know, he'll get a PET scan and he'll get his MRI and stuff done to see where things are.

Carol Vassar, host/producer:

Onilisha and Eric Newton, thank you so much for joining us, sharing your family story, and go back to the game. Enjoy the evening.

Onilisha Newton:

Thank you. Thank you so much for having us.

Carol Vassar, host/producer:

The Nemours Well Beyond Medicine podcast team is on the road. We're headed to Orlando. We're going to Las Vegas. Where should we go next? If you have an idea, leave a voicemail at nemourswellbeyond.org. That's nemourswellbeyond.org.

Leave us a voicemail with your podcast ideas and your travel ideas, maybe even subscribe to the podcast while you're there, and leave us a review.

Our production team this time around includes Cheryl Munn, Susan Masucchi, Lauren Teta, Frank Faust, Amy Knew, and Michelle DeVicaris from the Philadelphia Phillies. We thank the Phillies for hosting us for this event. That's it. From Citizens Bank Park in Philadelphia, I'm Carol Vassar. Until next time, remember, we can change children's health for good, Well Beyond Medicine.