- [Narrator] Live from your public media studios, WVIA presents Keystone Edition Health, a public affairs program that goes beyond the headlines to address issues in Northeastern and Central Pennsylvania.

This is Keystone Edition Health.

And now moderator Tonyehn Verkitus.

- Good evening and welcome to Keystone Edition Health.

I'm Tonyehn Verkitus.

Thank you for joining us tonight.

Every year, thousands of children are diagnosed with cancer.

Over time, treatments have improved survival rates, but the emotional, physical, and financial toll still continues to affect families.

Despite this, many stories of success along with groundbreaking research are always continuing to make a huge difference and impact the community along with many lives.

But first, WVIA's Lydia McFarland has more.

(air swooshing) - [Lydia] Affecting those under the age of 18, pediatric cancer refers to cancer that occurs in children.

The most common types include leukemia, brain tumors, and lymphomas, but there are many other forms as well.

Early detection and advancements in treatments have significantly improved survival rates over the past few decades.

According to the World Health Organization, an early diagnosis of pediatric cancer consists of three components: awareness of symptoms by families and primary care providers; accurate and timely clinical evaluation, diagnosis, and staging; and access to prompt treatment.

It's crucial to raise awareness and support ongoing research to improve outcomes, reduce side effects, and ensure that children diagnosed with cancer can live long, healthy lives after treatment, along with making access to support systems and compassionate care just as important as medical treatment.

For WVIA News, I'm Lydia McFarland.

- Joining us tonight, we have Dr. Nathan Hagstrom, Chair, Department of Pediatrics at Lehigh Valley Health Network.

Diane Dutko, Executive Director for Think Big Pediatric Cancer Fund.

And Jessica Schlicter, an outpatient social worker with Janet Weis Children's Hospital.

Thank you all for joining us tonight.

- [Panel] Thank you.

- Obviously, we're about to have a conversation for what is probably the most horrific diagnosis a parent could hear, but I'd like to believe that we'll have some positive messaging for folks as well as helping people understand what they can do if they receive this news.

Diane, I'd like to start with you.

Can you tell us a little bit about Think Big and how this organization came about?

- Yeah, well, ThinkBIG was started by inspiration that came from a young man named Carmine Monacelli who had bone cancer.

Dr. Colby Wesner was a resident at that time and he worked with Carmine and he was always just astounded by Carmine's demeanor.

One day, he wanted to be a pope.

One day, he wanted to be a scientist.

Carmine always thought big.

Unfortunately, Carmine passed away and Colby vowed to his mother and to pediatric cancer itself that he was gonna do something to make a difference for these families.

And that's how ThinkBIG was started.

- Nate, you've been doing this for a while, but how long has pediatric oncology been a specialty and how do you think it becoming its own specialty improved diagnoses for children?

- It's been a specialty really for over 70 years.

Children were among the first to be treated for and cured for cancer.

- Jessica, obviously, once people meet with someone like Nate here, you're probably the next person that they're speaking to.

What's the first conversation that you're having with families after they've heard this news?

- Normally, first, I'm assuring them that they are in great hands.

Our doctors are well versed in the medicine and research and all the latest scientific facts.

And then I'm talking to them about community resources, support, insurances, making sure, taking a little bit of those burdens off that there is help out there.

- Yeah, I'd imagine that first conversation is kind of hard because obviously they've been given this news, their mind is probably reeling, So you're gonna take it a little bit slow.

I know, Diane, you have your own personal story, which is part of why ThinkBIG is a passion project for you.

Can you tell us a little bit about that?

- Sure.

Back in 2017, at Christmas time, my three-year-old granddaughter was diagnosed with neuroblastoma, and she treated at Geisinger Danville and she treated at chop.

But after a journey of about 11 months, she ran a head Davin, and watching my family navigate pediatric cancer, ThinkBIG was there for my family to help them during that journey, that uncertainty, that fear, all of the things that are wrapped up into a pediatric cancer diagnosis.

And it was shortly thereafter that I became a board member of ThinkBIG in a way to give back.

And I was on the board for four years before they invited me to be their executive director.

So how could I say no?

They helped my family and, you know, we need to give back to families that are experiencing the same thing we went through.

So that's why I'm where I am today.

So it was just because of care and a journey that, you know, I wouldn't have asked for for sure, but your response is what gets you through.

- Well, thank you for stepping up to the plate after having had your own experience.

I'm sure there are many families who appreciate that.

Nate, in terms of diagnosis, obviously I would assume the earlier you diagnose, maybe the better prognosis you have.

Is that true with pediatric cancer?

- Most pediatric cancers are rapidly growing and cause a wide range of symptoms.

So the sooner the child gets treatment, the sooner they'll feel better.

- And is childhood cancer similar to adult cancer or do they act differently?

- Most adult cancers are slow growing.

Pediatric cancers come on quickly and can cause problems quickly, so you definitely want to treat it early.

But the good news is it responds well because most anti-neoplastic medications are actually attacking the cell's ability to divide and grow.

- Jessica, let's say this family's now been with you for about two weeks.

What sorts of things are parents starting to think about?

I mean, there's the obvious, right?

The kids probably aren't going to school, et cetera, but I think there's those things that we wouldn't even think about.

- Yeah, so most times when I meet with families, their biggest question is, how do I pay for this?

We're gonna do whatever we need to do to get our child the care they need, but what is this gonna do to our family in the long run?

And that is probably one thing that I've learned the most reassurance with the family is that in Pennsylvania, all of the children diagnosed with an oncological diagnosis qualify for medical assistance.

And if they have a primary insurance, that gets billed first, followed by the medical assistance.

However, that doesn't stop their everyday bills.

They still are working less, taking periods of time off.

So part of my role is hooking them up with organizations like Diane from ThinkBIG and they have just been a tremendous support to almost all of our patients.

- Nate, how long can treatment take?

I know it's different for different types of cancer, but if we're talking about a family who may need some extra help, what timeframe are we looking at?

- For most of the common types of childhood cancer, it's six months to two, two and a half years.

- Oh wow, okay.

And where do you come in, Diane?

- Well, I come in when Jess notifies me of a family and we have an allocations team that reviews all the applications and then we are looking for usual common household expenses.

Our mission is to just alleviate the stress that pediatric cancer brings and help them, you know, feel the hug that they really need and that they don't have to think about, how am I gonna pay my mortgage this month?

We'll do that for them.

- [Tonyehn] And about how many families are you supporting per year?

- [Diane] Per year?

60, 65 families.

- [Tonyehn] And how many of them are coming from you?

How many families come through your... - I think on an average month, I usually submit between 15 to 20 applications a month.

- Wow.

And what counties are you covering?

Is this the whole state of Pennsylvania?

- We're not quite there yet, although it is definitely a goal.

We are in 31 PA counties in Northeastern and Central Pennsylvania and probably as far west as kind of near Altoona.

We do have a University of Pittsburgh child that is now treating with us because we expanded by five counties in August, so they were included in that.

And that's what we do is, you know, a little bit at a time, add a few counties to make sure that, you know, we stand ready to serve them, that there's no compromise on, you know, what they will benefit from us.

So it's been very gratifying to see that, also very sobering to see it, and as I'm sure that you really see that all the time.

- [Tonyehn] And how has treatment changed?

I believe when we talked earlier, you talked a little bit about biologics.

How is that different from what people think about as traditional treatment?

- Yeah, the whole idea behind biologicals is to get more specific about what you're targeting, what's abnormal about that cancer cell and avoid damaging normal cells.

And it's allowed us to not only cause less, you know, toxicity from the treatment, but actually get better outcomes.

- So the children are responding well with less side effects?

- Yes.

- Okay.

Recently, WVIA's Tim Novotney met with Brandon Evans, a father who shared his story along with his brave daughter, Addie, of her journey battling cancer.

(air swooshing) - I wanna see this ball moving a lot quicker.

Let's go Move around, move around, move around.

Seeing her out there playing basketball and just getting to be a kid again, I love it.

I mean, it's how we're supposed to see our kids, you know what I mean?

That's what we want.

Even through her treatment, Addie was playing basketball.

It's a wild throw like that, move toward them, all right?

Don't just stand there, waiting for it to come to you.

- I was six when I got diagnosed with cancer and the bump on my shoulder, it was very like uncomfortable for me.

It was like a size of a softball.

It hurt really bad.

- They sent her down to the Children's Hospital at Philadelphia.

As soon as we got there in the ambulance, they put us on the oncology ward, so we kinda knew that they knew a little bit more than, you know, we had known.

So it was, you know, out of the pan and into the fire at that point.

Pass it, you gotta pass now.

Every emotion imaginable was going through my mind.

It's hard as a parent, the diagnosis didn't even come immediately.

It was actually five days down there.

They identified it as cancer on Wednesday, but we didn't know what type of cancer it was until Friday.

Breaking the news to Addie was a lot easier than I thought it was gonna be.

Addie's a tough kid.

She was actually the one that kind of built us up when we were dealing with everything.

- The thing that would always make me feel better is the girls' basketball team.

I love them.

When I was sick, they would do the coaches versus cancer game and I would sometimes play or even be the coach.

- The toughest part of watching your child go through the treatment is you have no control watching what cancer does, what chemo does, what radiation does, and the after effects of everything is just, you know, it's the greater of two evils at that point.

The biggest thing I learned about life throughout this journey, you never know.

You have to cherish your family.

So those little moments, you know, they'd make a lifetime.

- [Interviewer] If there's another kid going through something like you went through, what would you like to tell them?

- I would want to tell them to be strong, to be brave and to fight through it.

- If she fought through it, I remember when she completed her radiation, she had third degree burns on her back and we were like, all right, hey, we'll take it easy today.

And she goes, "Got a basketball game tomorrow morning, dad, we gotta go home and get some sleep."

So that's Addie, that's who she is.

(inspirational music) - So Nate, I have a couple of questions based on what we just saw.

For starters, would you say that rates of cancer in children are increasing, decreasing, staying the same, and are most environmental or genetic?

- So over the last 50 years, it has increased, but primarily because of better detection.

As far as, I'm sorry, what was your second question?

- Whether it's environmental or genetic?

- So most of the time, it's a genetic mutation that occurs within the cancer cell.

It actually takes several mutations.

We don't really know of too many environmental causes of cancer.

There are some inherited causes, but there actually a rare, you know, cause for childhood cancer, usually it's just a random genetic mutation that occurs within usually a lymphocyte or a cell that's developing as the child is growing.

- And then they also mentioned that Addie's in remission, do most children stay in remission and what might be the percentage of kids who have occurrences?

- So almost 95% will go into what we call remission and about 30% will have recurrence.

And out of those 30%, we're still able to cure over half.

- Oh, that's positive.

I wanted to ask you Jessica about, stepping outside of the hospital for a second because Addie mentioned coaches versus cancer, which is a wonderful program, I'm just wondering if there's programs that you can recommend to the families.

For instance, I know the American Cancer Society also has a camp, but are there a lot of programs like that that kind of take the child outside of their problem and put them into a place where they feel like a normal child?

- Yeah, I think one of our more local programs is Camp Dost.

It's held in Millville, PA every summer, usually in July I believe.

And that allows for patients and siblings to come to an outdoor camp, do activities, outdoor games, ropes courses, swimming, and really just let them be a kid.

- And I wanna come back to your program for a second.

We've talked about the fact that you support families, but what specifically are you supporting them with and is there a dollar value that goes with that?

- Yeah, each family that qualifies for our program receives $5,000 in their calendar year.

So if they came to us in April, that's from April to April.

And, you know, through that, they submit their expenses.

We don't give the money to the family.

We pay their expenses for them.

So, you know, whenever that, and also too, should a child pass away, we will pay up to $5,000 for funeral expenses, so that, you know, the pressure is taken off as much as possible.

- And this is for any types of bills and expenses?

- Well, it's typical.

Usually, it's rent, car payments, insurances, utilities.

They're the most common ones.

Every once in a while, depending on the family's circumstances coming into the cancer, there are some, you know, things that are outside that circle that the committee will evaluate.

But for the most part, that's what we see.

- And when parents are thinking about how they're going to manage this next potential six months to three years, I think they're probably gonna have to consider family medical leave, PTO, et cetera.

Do you help them navigate these things and figure out what they are owed by their company and how to get extra help?

- Yeah, so part of my role is talking to them about the Family Medical Leave Act and I assist with any paperwork that they may come.

A lot of our families take what's called intermittent FMLA and it's all goes based on what their child's treatment journey is going to be.

A lot of them will do intermittent so that they can work when they can.

Now a lot of people have the option to work remotely.

So at our facility, we do have a lot of parents that will try to work from the hospital room if their child's admitted as much as they can.

And I've heard from some of our families that that really helps them kind of gain that normalcy that they are being able to take their mind off of it and focus on work for a little bit when able to.

- Yeah, I'd imagine that the distraction would be helpful.

Obviously, there's the physical toll on the child, but then I would imagine there's also the mental and emotional toll that's happening for the entire family.

Can you both speak a little bit to that, you from your perspective of helping families, and maybe Diane, you can speak to this from a personal perspective, if you don't mind?

- Sure.

- From my perspective, I mean, kids are so resilient.

And if there's one thing in my 10 years in this position that I have learned is sometimes it's harder on the parents than the child going through it.

I think Addie's dad said that so well in the video.

But the kids are really resilient and I think in my role, I appreciate being able to take some of those weights off with, hey, we can get you some help with paperwork from work or we can help coordinate with the school, whether that's home bound or cyber or we're just gonna take a break from school right now.

And then probably the biggest relief is knowing there's agencies like ThinkBIG that can really help because whether you're working or not, your income's reduced.

So you may not have the medical bills because your insurance coverage is there, but that doesn't stop your everyday bills from coming in.

- Right, right.

Well, when my granddaughter was ill, there's also the fact of their siblings oftentimes at home who cares for them, you know, how does their life go on?

And my other grandchildren at that time were homeschooled.

So the other grandma and I traded off.

She took care of the bulk of the homeschooling and I pretty much had them from Thursday to Monday.

Just, you know, cooking, cleaning the home, taking care of household things and trying to create some normalcy for them as well.

So I think that was my big role in that situation.

And just when I work with families, you know, sometimes they'll ask me, "How did you get started in ThinkBIG?"

And I have that little open door to share that I really do understand what you're going through because we were there as a family.

And, you know, I think that in some way when they know that somebody really does understand, it's helpful to them.

They feel, "I'm not in this alone."

And that's really one of I think the biggest part of ThinkBIG's mission is helping them feel cared for.

- And Nate, from your, obviously you're dealing with a lot of the physical repercussions of this diagnosis.

How do you find that children manage that?

And as a physician, how are you helping the parents manage?

- Well, children are resilient.

They really do bounce back very quickly.

Amazingly enough, you know, their growth seems to catch up after their treatment.

They tend to catch up in school for the most part because they're so, you know, so driven to get back to normal.

It's just truly amazing to watch these children go through this and how resilient and how amazing and how much they still want to have fun.

You know, make jokes, make fun of their doctors.

The parents, you know, as pediatric oncologists, we have two big jobs.

Get the child well and help the parents through it by explaining to them what's going on with their child, how they can help and what to look for.

And also to make sure that they are connected to all of the great resources that help them maintain at least as much normalcy as possible for themselves and their family to help the siblings, you know, not miss too much of their childhood.

And then, of course, you know, focusing on not just the treatment for the child, but helping the child cope with all of the things that they go through.

- Yeah, I can only imagine.

In terms of trying to maintain normalcy, we're trying to help families stay connected to their jobs and their kids.

You're trying to make sure that people are getting bills paid.

But once the kids go back to school, I'm just curious what that readjustment is like, if anyone can speak to that a little bit.

I don't know if kids may still have treatments that they have to have even though they've returned to school.

- Well, I'll start with the sort of the medical perspective.

There are times when going to school, you know, probably isn't safe or will result in more challenges than the child really needs at that time.

But we do try to get them back to school as soon as they can, even if they're still on treatment.

We want them to live, you know, as normal as a life as they can, but also continue on through school.

If we can get them to continue on to the next grade for example, then that's a success.

- Yeah, I think Addie was a prime example of that, saying that she has the basketball game, right?

You wanna get back to what's normal.

- And I think most schools that I've worked with are really accommodating.

I've helped families with recommendations for 504 plans that if, you know, the kid's in school and they need a little bit longer with assignments, they get that.

If they need to move their seat up to the front, they get that, or leave a little bit early to get to the next class on time.

The schools are really great as a support for our kids.

- Yeah, I know the school nurses definitely work really hard as do the guidance counselors and I didn't even think about the fact that you might have to connect with the school around a 504 plan or something of that sort.

Is there anything you'd like to add to that, Diane?

- I just think that, you know, for my family, the experience was one that even though it was probably the darkest time in our lives, we had so many people that gave us an outpouring of support.

There were people doing fundraisers, there were so many things going on in the community.

And, of course people, you know, our church was praying for us and people were caring.

And I mean, that just means more than, it's just not a word you say thank you.

It's really deep and heartfelt when, you know, you really almost depend on that.

So it was definitely present.

- Yeah, I'm glad you mentioned fundraisers because I definitely wanted to ask if people wanted to donate to ThinkBIG, how could they do so 'cause I'm sure you would love to be able to expand your services.

- Sure, well, we have a credit card portal right on our website, www.thinkbigpa.org.

And, you know, it's really simple, user friendly, and, you know, it really helps the families, you know.

They don't have to think about their electric bill, they don't have to think about, you know, the small incidentals and things, so every little bit helps.

- Yeah, and if you could, can you just tell us maybe one positive story that you've seen in your years of doing this work?

- I think one of my, oh gosh, I have so many favorite stories.

For me, it's seeing the kids come back after treatment, whether it's their one-year follow up, their two-year follow up, and just them being excited to come back.

They spend so much time with us, it becomes like another little family.

We get to know them, we get to know their siblings and uncles, cousins, grandparents.

And to see them come back and so many, like Diane just talked about giving back, so many of our patients give back.

And I think that is just what brings it all together.

And for me, it's being able to maybe link a family that went through it with a family who's just starting out with that journey.

And the networking piece of it I think is one of my favorite, favorite things just to see 'cause for me to say it as a social worker is fantastic, but when you hear it from somebody who's gone through it, it just means so much more.

- I appreciate you all sharing your insights.

Thank you to all of our guests for their insights and to all of you for joining us.

This and every episode of Keystone Edition is available on demand on your YouTube channel, and now as a special audio podcast, so you'll never miss an episode.

Visit wvia.org/keystoneeditionhealth to stream episodes or subscribe to the podcast.

For Keystone Edition Health, I'm Tonyehn Verkitus.

Have a good evening.

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