Camp Sunshine #213

Nancy Cincotta:

Someone may go through their whole life not meeting somebody else. You know when they come and they arrive in Maine and it's the first time that they're meeting somebody, how do we do it?

Meg Dermody:

All of a sudden one day your world changes. It comes to a screeching Halt.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle and you are listening to Love Maine radio show number 213, Camp Sunshine, airing for the first time on Sunday, October 18, 2015. When children become seriously ill, their lives are forever changed, as are the lives of their families. For more than three decades, Camp Sunshine has been providing hope and help to families who are struggling with life threatening illnesses. Today we speak with Camp Sunshine Executive Director Michael Cates and Psychosocial Director Nancy Cincada as well as Meg Dermody, mother of a Camp Sunshine family. Thank you for joining us.

Dr. Lisa Belisle:

people and organizations who we have on our radio show list and we have them on our list for years and years and for some reason we don't quite get to them. But they're always in the back of our minds and when we finally get to them, it's such a wonderful thing to finally Connect. And today we are with two such individuals from Camp Sunshine, which is a really great organization that's been around for 30 years.

Michael Katz:

31 years.

Dr. Lisa Belisle:

31 years, exactly. Today we have with us Michael Cates, who is the executive director of Camp Sunshine. He has been involved with the camp since its inception in 1984. Michael is also active in the camp community and serves as a board member for both Maine summer camps and the main camp experience. We also have with us Nancy Sinkata, who is Camp Sunshine's psychosocial director. She works with campers and their families and she's also on faculty at Mount Sinai after having worked there for 30 years. Thank you so much for coming in. I know that it's a busy time all the time at Camp Sunshine and the fact that you're here and Nancy, you're here having come up from New York where you have to go back and follow the Mets, that's very important. So we're lucky to have you both here today. This is a thing for you. Both of you have been with Camp Sunshine a really long time.

Michael Katz:

We have since again since its inception. And it just becomes part of your life.

Dr. Lisa Belisle:

Well, tell me about Camp Sunshine for people who are listening, and I can't imagine there are many that haven't heard of Camp Sunshine, but for people who are listening, give me a little bit of background on it.

Michael Katz:

We are a camp that sets up retreats or respites for families that have a child with a life threatening illness. And what kind of makes us a little bit more unique than any other camp is the whole family joins us at camp. The mom, the dad, the children, the ill sibling as well as the, well siblings join us and the whole family spend a week at camp. We run activities for the complete family, have the events. But what separates us, and I'll let Nancy speak a little bit more to that is we also have a psychosocial program. So while mom and dad are enjoying camp, they also have the opportunity to build community, build resources, and get away from the challenges they face on a regular basis, even if it's just for a short period of time.

Dr. Lisa Belisle:

Talk to me about that, Nancy. I know that this is a really important piece is the family, the dynamics, the impact of a long standing or even a shorter illness on a child and a family. What is it that Camp Sunshine does that makes you different?

Nancy Cincotta:

So camp is magical in a variety of ways. And as Mike was saying, we provide activities for families, every member of the family, to kind of, in a way have an opportunity to get away from the illness. But we also provide avenues for people to talk about the illness. So it's actually kind of the blend of the recreational and the psychosocial piece that create this place where you can experience maybe more joy than you have experienced since your child was diagnosed or since you were diagnosed, if you're the child. And then you also can have an opportunity to connect with people on a level that you might not have in other places. So sometimes when you're diagnosed, you may feel isolated, your family may feel isolated, and that you're the only people in the world going through this experience. And, you know, when you're growing up and you're a kid, you really want to be able to be like everybody else and to know people that are going through the same journey that you are. And so you come to this place where suddenly everybody has a very similar experience to what you're going through. And I think it makes you feel like you're not alone anymore. And I think it makes families feel like they're not going crazy. That in fact, this is the path that people take, and these are the kinds of things that people think about and they experience. So it is a wonderful atmosphere for people to feel, I think, somewhat whole again. And I think that by having the whole family there, it allows people at every level of the family to connect with each other and to, I think, kind of leave having had what is a very therapeutic experience by virtue of all the different components of the program.

Dr. Lisa Belisle:

When Camp Sunshine began, it was weeks that were held at the beginning and the end of the summer. This was held at Point Sebago, and it was for kids with cancer, Correct? That was the initial program. But now you're on your own campus still near Point Sebago. But you also have families coming in year round. You have programs for not just cancer, but specifically brain tumor. You have sickle cell anemia. You have some pretty rare illnesses as well. What caused that to occur? Why did you go from two or three weeks with one specific disease process to year round and many.

Michael Katz:

Well, the admission, as you state, initially started with serving the oncology community, but there was also a need out there for other illnesses as well that had reached out to us. And that's how we. We kind of expanded to illnesses like lupus, the sickle cell, as you referred to, and also some rare diseases out there, Fanconi anemia. There was certainly a need for that community to have an area where they could meet. And we've actually become kind of the national symposium for when they get together and it's just amazing to see the resources that take place at camp for our Fanconi anemia session there, where we have families come from all over the country, all over the world, to meet doctors that have come from all over the country, all over the world to learn more about the illness and where they can go on their journey.

Dr. Lisa Belisle:

Nancy, you were saying that one of the things that was interesting about that aspect of things is that people can take a more active role in their own treatment plan and even in the research of the disease.

Nancy Cincotta:

Yeah, we have three or four programs during the course of the year where people can come and they can meet people who are both doing the treatment of or research about their particular illness. And some of those illnesses are very rare. There's some of the bone marrow failure diseases, Fanconi anemia, diamondback Schwachman diamond syndrome, and dyskeratosis anemia. And we're also starting to do that in the low grade brain tumor community as well. And the thought would be is that people are stronger by being empowered with information and that they can. Particularly when you think you have something very rare and there's only certain places in the country where the illness is treated, it gives you the opportunity to meet people that you may later need for treatment and for you to understand procedures, say you're going to need a bone marrow transplant, to understand the dynamics of that before you are in a situation where you need that service. And it allows you to be able to kind of make connections that you might then later be able to reach out to those physicians and those scientists to be able to do. And, you know, in all of the illnesses that we serve, we have the same sense among families when they become connected to each other. But in some of the rarer illnesses, someone may go through their whole life not meeting somebody else. You know, when they come and they arrive in Maine and it's the first time that they're meeting somebody with that illness. So it is a pretty remarkable thing that happens for people in that situation.

Dr. Lisa Belisle:

I was surprised to learn that you have people coming not just from Maine, but all over the country and really all over the world. And part of what you provide. Because all of this is free, correct? Part of what you provide is actually transportation from different parts of the globe. That's a big deal, right?

Michael Katz:

We don't want not being able to get to camp financially or whatever it might be to limit a family from being able to get to camp and experience the resources that are available.

Dr. Lisa Belisle:

Nancy, one of the things that I think about and I think in part prompted by an earlier conversation that you and I had is the long term implication of some of these treatments upon children and their families. And I believe you and I were having a conversation because we're writing an article for Maine Magazine about Camp Sunshine and you were describing some of the treatments for kids with cancer that can have caused them to have problems with learning, with perhaps emotions, behavior. We think about chemotherapy with cancer patients causing hair loss and, you know, physical problems. But when you're giving chemotherapy or radiation to a growing body, then you're really impacting brain cells and a lot more things that impact learning than perhaps adults have to deal with. So tell me about what that means to the parents who have saved their child from dying, but now are trying to help them move up through their education, perhaps try to go to college.

Nancy Cincotta:

So I think for everybody, when your child is diagnosed with cancer, your first reaction is to do everything that you can do to cure your child. And I think that's the focus of the medical community, it's the focus of the family, and it is very much the need at hand. I think one of the things that we see is that a lot of families of kids with leukemia and some other diagnoses who've had a tremendous amount of chemotherapy and maybe radiation, that in fact kids do have issues, some in executive functioning, some in learning, some behavioral issues. And it is very hard re entry back into the world where everybody is healthy and people don't have that experience. And I think when you look healthy, there is an anticipation that everything then goes back to normal. And I think it can be quite a struggle for a child and a family to understand what the impact of the illness would was and then what kind of supports that they need. And sometimes you have kids who are old enough that they are aware that there was something that they could do pretty well before they were diagnosed. And then they have regressed to a place where it is much harder for them to do those things. And I think so there's a lot of different struggles in how people learn what it is that the late effects are for them. Then learn strategies to deal with the late effects and to understand if there are things that there will be hope that they can change and improve and go back to what was previously normal, or what things people will need to learn to compensate with as they grow. And I think that because those things are again less visible, it becomes more complicated for the world to understand. And for some people, it feels again like they're on an individual journey to have people Understand that. And so then some of the empowerment comes to come to realize that it's not just your child that is experiencing this. And I think it's really hard for parents sometimes because you feel like, what is your role in parenting? You know, did you do something or is there something more you should be doing for your child? And it becomes a different battle when you realize that this may be. These may be things that are being faced by a lot of other kids in the community. So I think that there's a tremendous amount of education that needs to happen even after people are off treatment. And I think that is a way in which the pediatric world and the adult world are somewhat different. So there are late effects and maybe more lasting effects and more noticeable effects for children, but they're not as commonly known and managed.

Dr. Lisa Belisle:

And that's in direct contrast with, I guess, the lore of the camp is that the co founders were watching a news report on television and a reporter put a microphone in the face of a child who had cancer and said, how does it feel to know that you're going to die? And this was so striking to the founders of the camp that they said, well, we need to do. I mean, how horrible that one would ask a child that question, first of all. And second of all, what can we do for these children who maybe are dying? But Nancy, what you're saying is maybe they aren't dying. Maybe there are longer term survival issues. And this has all shifted dramatically over the last 30, 31 years that the camp has been in existence. So, Mike, tell me how one, I guess, walks that line between knowing that you have children who are perhaps have been immune suppressed because they're getting treatment for cancer, but also want to go in the swimming pool, also want to go out on the lake, and perhaps maybe they need assistive devices, maybe they need a wheelchair, maybe they need crutches. How do you provide a full camp experience knowing that there may be different abilities that your campers and families have?

Meg Dermody:

Right.

Michael Katz:

Well, the camp facility itself is set up with that in mind. So many of the activities are geared towards having that ability. If a child does need some type of accommodation that we can fill that need. Other ways that we work around that too, is we also have a number of volunteers that help each camp session. But if we do have a child, and we call them a one on one candidate, we supply volunteers that would be just that, mentor for that child. So if there's any need for accommodations, that assigned volunteer will be there for that child throughout the whole week to make sure that child can be inclusive with the rest of the groups. And we have other items around the camp. In fact, to get into the pool, we have a. A standard wheelchair accessible mechanical item that could get the children to the pool. We have on our playground a wheelchair accessible swing. We've developed a lot of different ideas into the program so that everybody will be inclusive into the different activities and events. And again, looking at the different varieties of where a child or where a family may be, we've adapted the program as well, or I should say expanded the mission. Along with our regular camp type sessions, we do have a post treatment session which is where we hope that the children go. But as Nancy had outlined, there's still issues attached to that as well. But we've designed a session specifically for post treatment families.

Dr. Lisa Belisle:

There's also room in the schedule for kids to be kids and adults to be adults and then for families to intersect. So that's an interesting thing. There's, I believe adults have sort of adults night out when the kids are, I don't want to say taken care of, but I guess are involved in other activities. Why is that important?

Michael Katz:

Just for the wellness of the families. For many families, many parents dealing with an ill child and the challenges of having an ill child haven't had any time for themselves, haven't had that one night out. So what we do at camp is we provide one evening where the children are under the supervision of the volunteers, mom and dad, kind of. We transform our dining hall into a gourmet cafe area. They have a nice dinner and then they get to be the star of the evening as they perform karaoke. And while they're kind of letting loose and just enjoying themselves for an evening, the children are well taken care of. We have a sleep out with the 9 to 12 group. We bring in things such as Owls of Maine to entertain the younger children. And while that's all going on, mom and dad can just for one evening out of the week, you know, many times haven't had that opportunity, can just experience each other.

Nancy Cincotta:

We also have these fun games, the Super Duper Blooper games for adults and teenagers. And you know, a couple years ago we had an interesting experience. A child was out of her group kind of en route to the bathroom with two volunteers and she peaked her head into the games and they're very funny and people laugh all the time. And she saw her parents and she turned to her volunteer and she said, you know, my parents forgot to tell me that they know how to have fun. And it's just kind of like a moment where you realize that kids see their parents stressed all the time, but here they come, and there's the talent show, and maybe their parents get up and make a fool of themselves in front of everybody. And in a way, it provides the activity itself, provides a very encouraging atmosphere. And it really does bring people back to kind of laughter and fun and recognizing that they can. Even if they're in the middle of this illness experience, they can still have fun. And we're talking about activities before. We have some programs, like the retinoblastoma program, where every child has an issue with sight. Some children have lost an eye to the disease, some have lost both. And so sometimes we will do something creative and we will have everybody, you know, wear, you know, a bandana over their eyes so that they're doing the activity without sight. Or we've brought in games that use different balls and different activities that have bells and different things in them so that everybody will participate in something and there'll be kind of an evenness about the experience. And we've had great luck in really kind of helping everybody see what the world is for the person who may not have sight. And so that's kind of like one example. But we have that happen in other programs related to the illness as well.

Michael Katz:

And we get some of the activities for that particular week that Nancy's referring to. Some of the evening activities, more audio based. I don't know if you've heard of Rick Charette, who's big in the community around here.

Dr. Lisa Belisle:

Doesn't he do something about Bubblegum?

Michael Katz:

He does. He has a song about Bubblegum. But he comes to camp at no charge for that week because he knows that the children have visual issues. And he's all about music and making the children happy. So he comes in and donates his time and talents.

Dr. Lisa Belisle:

An important component of Camp Sunshine is volunteering. And it's not just volunteering. Every session has its own set of volunteers, and every session is roughly a week long. It sounds like you also might have some weekend sessions that go on as well. But you also have people who have volunteered to do things like make quilts. And I was struck by the fact that you had a group that volunteered to make quilts, and you have these lovely. They look like the units where people stay, the volunteers and the families. They look like hotel. Very nice hotel.

Michael Katz:

Hotel suites.

Dr. Lisa Belisle:

Hotel suites. And you had so many people wanting to make quilts for these suites that you not only were able to do the initial beds, but you were Able to give extra, extra quilts. There are so many people that want to give to Camp Sunshine. That seems like that's an interesting place to be, because not every nonprofit has the number of people willing to volunteer

Michael Katz:

that you do right now. We've been very fortunate, and it kind of reaffirms your faith in humanity when you see. On all levels. And the quilting that you referred to is. When we were first opening up the facility, our facility that we're in now, we wanted to make it a little bit more homey. We had some folks in the quilting community that said, geez, would like to help. How can we help? And so we said, well, you know, putting quilts on the twin beds, the bunk beds, would be a great start for the families. And they said, well, how many? We said, well, we have 40 rooms. So between a set of twin monks. Excuse me, twin beds, set of bunk beds, and a futon, each room required five. So they said, all right, well, let's send this out to the community. And they sent it out to the quilting community. And as you said, we've got enough quilts to put in all the rooms and enough to turn them over at the end of each week so we can wash them as well as we have. The buildings are decorated with the quilts also. So you put the call out there, and they'd be amazed at the human spirit that what comes back. As far as each camp session, it requires between about 80 and 90 volunteers to run a camp session. As we divide the children into various age groups and want to make sure that they're all well taken care of, the ratios that we have at camp, I don't think you'll find anywhere else at any camp across the country. It's phenomenal, and we get a lot of support for that. It's because of these volunteers that were able to run the camp each year. Probably used in the neighborhood of about 2,000 volunteers just at camp sessions. When you were out, you would ask me about how many volunteers do you think you've used since its inception in 1984. And numbers at the beginning weren't quite as accurate, But I'd say roughly in our 31 years, just in camp sessions itself, we're probably in the neighborhood of about 28,000 volunteers that have worked at camp, and that doesn't even factor in the volunteers that we use at our pumpkin festivals at our polar plunges. So we're probably in the neighborhood of about 30 to 35,000 volunteers that have made Camp Sunshine happen. And we're very grateful for that.

Dr. Lisa Belisle:

And these are volunteers that you very carefully try to match with. You try to match their talents with the needs of the camp. You very carefully try to understand, make sure that the volunteers are appropriately educated and have the right background. I don't want to say background check. That makes it sound kind of onerous, but.

Michael Katz:

Well, no, actually we do background checks on all the volunteers as well.

Dr. Lisa Belisle:

It's necessary and important. So these are people. So you've actually already vetted out probably other people, and you're still left with this enormous number of people who are volunteering.

Michael Katz:

Right. We go to various workshops and seminars, and we're kind of the envy of all the nonprofits that where do you get all these volunteers? And again, it's just the experience that happens at camp. They go home and they tell a friend or they tell a co worker, and it builds from there. But we do. We vet the volunteers between reference checks and background checks. And as you mentioned, we do try to put them in a placement where it's going to be successful for them as well as camp. So if we have an individual that maybe runs a day camp or a daycare at home, more likely than not, we're going to put them in with our totlaters, our three to five year old. So it lends itself to success.

Dr. Lisa Belisle:

Nancy, your husband is not a volunteer, but he's employed by the camp and as the medical director. And his specialty is, I think it's pediatric rheumatology. Rheumatology. So he's a pediatric subspecialist, but he's responsible. He's doing camp medicine, essentially. And you're coming up back and forth from New York all the time. This has been an enormous commitment for you and your husband, and so for your family, really. Why have you continued to do this?

Nancy Cincotta:

So, Cam Sunshine is a pretty amazing model, and it is not the kind of thing that you could do in the middle of New York City or in the middle of a major city, because you need. We're on how many acres?

Michael Katz:

We've got about 30 acres.

Nancy Cincotta:

So we have the ability to do things that, again, are hard to imagine someplace else. And some of it is the combination of this amazing facility and then the people that we've generated. You know, we're talking about volunteers. And you think about, like, where would you have a cohort of 80 people who come together in the interest for the sole purpose in that week to make the magic happen and to really be able to meet the needs of the families who are present? And to allow people to feel like they are so special and that dealing with the illness is. It's a big deal, but it's doable and that everybody can help you do it. So I think that the commitment comes from the passion for the program, which really provides a tremendous service to families. And if you know people who are living with a life threatening illness, you understand how difficult life can be, how difficult medical care can be, how many ups and downs there are on the roller coaster and how when people get bad news, what that means. But you know, we have kids who have, you know, surgeries that I think some adults would never feel like they could recover from. And you know, that a kid goes into surgery knowing that, you know, I'm going to have this brain tumor removed and I'm going to in six weeks be at Camp Sunshine and I really want to be there. And I think that we have become a very interesting component of the medical journey for a lot of people because I think there is. Kids are inspired to be able to get back and to do the activities and to be part of the. And so we become kind of like a home away from home, but I think an inspiration through the journey and you become part of that. You become part of the mechanism that helps people actually live day to day with their illnesses. And I think for whether you're a physician or you're a social worker, the feeling that you can help and seeing that you help and seeing how much people value what you've done for them and how much they tell you you have helped them with it, you have changed their life, is something that is worth the many hours of commuting and the many years of commuting to do it. You know, when Mike was talking before about volunteers, there's this other component to the program where we've developed the opportunity for families to come back and volunteer and to give back to the community. We actually have an amazing donor that enabled us to build a building for family volunteers. And we, we have increasing number of families who've gone through the program and then are coming back to help other families. And some of the magic of that is if you're a parent of a child newly diagnosed with leukemia and you come to camp, it's the first time you're letting your kid go into a group and there's a volunteer in the group who has a child who was diagnosed with leukemia 10 years ago, who else could you be more comfortable with than to hand your child over to that person? So we have not only people who are Volunteering because they are altruistic, amazing people. We also have people who are volunteering because they know how much we have helped them and they want to help and give back to the community that they have come from. So that, you know, you become Inspired by watching 10, 12, 14 volunteers come and be able to share kind of both their illness journey and their experience with Camp Sunshine. So it's an amazing program.

Dr. Lisa Belisle:

Mike, I know that all of this requires money and this is why you have some great fundraising events that take place over the year. You have some polar dips in October. You also have the Pumpkin Fest at L.L. bean.

Michael Katz:

We do. That'll be coming up in October. Great fun. We're looking for volunteers for that as well as folks to just come out and enjoy the day. We have bands face painting and there are a number of carved Jack O' lanterns that they can see lit up. And much like our volunteers that help during the camp session, we have camp families to come out and help as well. It's just a nice day and it's a great day of fun. So we encourage people to come out to that, that is in October. We also have a big Monte Carlo weekend that takes place at where camp initially started over at Point Sebago. We actually have a camp session, oncology session taking place at our camp and next door going on at the same time at the big Monte Carlo weekend. And we look for people if they can donate any items that we put up for auction. That's one of our bigger fundraisers as well. You mentioned polar plunges. That'll be coming up probably sooner than we would like as it gets a little colder here. So that's a great way. And then we've had some great corporate support as well. This year alone, one of our biggest corporate supporter, Tropical Smoothie stopped by camp and dropped off a check for a million dollars. So very helpful to camp.

Dr. Lisa Belisle:

So those of you who are listening, if you have a Tropical Smoothie store in your area, please visit. Please visit and tell them that Camp Sunshine sent you. Yes, thank them and thank them. What is the website for Camp Sunshine?

Michael Katz:

For those who'd like more information, www.campsunshine.org org

Dr. Lisa Belisle:

I really appreciate the work that you've both been doing over the last three plus decades now with Camp Sunshine. It was a pleasure to go out and spend time with you at Camp Sunshine and I look forward to. I know our readers of Maine magazine look forward to our upcoming article about Camp Sunshine. We've been speaking with Michael Cates and Nancy Cincada both of Camp Sunshine. Keep up the good work and thank you so much for supporting the children and families who are going through so much.

Michael Katz:

Thank you. And thank you for having us and helping spread awareness about Camp Sunshine.

Nancy Cincotta:

Yes, thank you very much.

Dr. Lisa Belisle:

my great pleasure today to have with me an individual who has lived a life I hope never to live, sadly. But she's living it in a really great way. So it's kind of an interesting story. Meg Dermody is the mother of Finn and Shea. She grew up in South Paris. She's an artist and an art teacher. Her husband grew up in Portland. Their family became involved with Camp Sunshine the year after Finn's diagnosis with high risk medulloblastoma, which is a brain tumor for those of you who don't know. And the high risk thing, that kind of scares me. So this is what I mean when I say you're living at least that part of it that is the part of the life that I have always as a mother thought I don't know how people do it. I guess you're going to tell us, tell us about Finn.

Meg Dermody:

How do we do it? All of a sudden one day your world changes. It comes to a screeching halt. It happened when Finn was in kindergarten. He was just started, he was five years old and you're living a completely simple, normal life. And he was diagnosed. We just ended up in the er. All of a sudden to find a brain tumor. He would wake up and he would. His symptoms were showing for about three months. He would wake up and vomit here and there. And frequently we didn't know what was going on with Finn. And he. Asked me how did I did it, how Do I do it, I guess is the question. And you don't have a choice. It just happens. And you as a mom, know that you just, you do anything for your kids, no matter what the situation is, and just more forward.

Dr. Lisa Belisle:

Well, I think about this. I think I've mentioned on the show before, for people who are listening, that I have always felt important to support the causes of the Maine Children's Cancer Program and the center for Grieving Children. And mostly I would do this as a doctor, I knew it was important, but it was also like kind of warning against anything happening to my children. And pretty much as soon as I got pregnant with my oldest, who is now 22, I began to fear the thing that all parents fear, which is that something will happen to my child. But you're talking about the reality of something really bad happening to your child and watching him go through this illness and not knowing really what's wrong and then finding out something's really wrong. You're right. There's no choice. It is what it is. This is still your child that you love, and you have to move forward with it. But this is just so, I guess, unfathomable for most parents. Really, it is.

Meg Dermody:

You kind of go into shock when it happens. I would say to have everybody around me supportive. My family, like I said, I grew up in Maine, my husband grew up in Maine. So all of my family was close by. So they were there to kind of pick up the pieces that kind of fall apart when it happened. I mean, like I said before, like you, you kind of float through life in a normal pace. Like you, you wake up, you send the kids to school you. Everything's just da, da, da, da, da. And it just, just. It just falls apart because your new life is in the hospital every day, day in and day out, and something like cancer. It's not an appendix or anything like that.

Nancy Cincotta:

It's.

Meg Dermody:

It's a marathon, it's not a sprint. Our oncologist would say that to us to take our time and pace it. And you have to. We had amazing social workers next to us who would just say, this is your. This, you are your home. Because I struggled with that. Because, you know, as a stay at home mom, I mean, I create my home and I value it so much. So just to be ripped apart from your home, your family, your routine. And she said to me, you are their home, so you are for your kids, you are home. So to make, to keep that love around my kids. And that was kind of our, my philosophy going through the Whole thing. I was pretty calm going through the whole thing. And it was just, here. We're gonna make home here now. This is our new normality, and we're just gonna do it.

Dr. Lisa Belisle:

The way you described Finn going into kindergarten was very talkative and curious and vivacious and kind of ready to take on the world. And it was the fall of his kindergarten year that he started having these episodes of vomiting. And you were just knowing that something wasn't really quite right with him. And then you needed to have. He needed to have surgery. And his personality changed, and actually his whole physical self really changed after that.

Meg Dermody:

Completely changed. I felt. This is what's very sad. I felt like I lost much of. For months, because after surgery, some kids, when they go into that area of the brain, you don't really know the outcome. But Finn had a condition called posterior fossa syndrome. And it's basically the trauma that's left after the surgery. And he couldn't walk, he couldn't talk. He was mute for about two and a half months afterwards. He couldn't move his arms and legs. His first sentence so after he did start talking was, where's my iPad? So wait, that we got that kick. He was like, finally, I can say, where's my. Get me my iPad. But it was. It's. I mean, that was my biggest struggle, was just not being so afraid that he didn't know what was going on. I mean. I mean, not to be able to communicate with your child, not to reassure them. That's the only way I could show him that we're all here, family was here. I'd bring in lamps in the hospital room and make it as homey as possible. And no one would ever leave his side. Either Tim or I were right there with him. We were passing ships in the night.

Nancy Cincotta:

We.

Meg Dermody:

Like I said, our family kind of just broke apart. We weren't all together all the time. We were when we could. Shayla was 1 years old at the time, and she loved it. She loved the playroom and Child Life Services, and everybody at Barbara Bush is amazing. We did most of our treatment at Bubberbush, and then we went down to Boston for other things.

Dr. Lisa Belisle:

But, yeah, you described that you were still nursing her when you found out about this. So in addition. So you're still trying to have, like, you're trying to help your 1.1-2-2 year old with her, like, normal development, normal nourishment, and then you're struggling with this other situation. But it's interesting that. It's interesting that she Just didn't know any difference. So she was just as happy. There's a playroom.

Meg Dermody:

It's normal for her.

Dr. Lisa Belisle:

Exactly. There's people to talk to. There's people to interact with.

Meg Dermody:

It was exciting for her, and. Which is strange, but he, you know, we think about, you know, if. And we talk with many families at Camp Sunshine, everybody has different experiences. And the kids that, you know, if they're already in a routine like going to school, it's harder on them. So for Shayla to be that age and her personality, it didn't disrupt her too much. So we were. I don't want to say grateful, really, for that situation, but.

Dr. Lisa Belisle:

So Camp Sunshine, I'm interested in this. I went and visited, and they do have an amazing structure, physical plant. They have boats on the waterfront, and they have just a beautiful pool area. And then they have great people working there. They have great volunteers. But it seems like what families have described predominantly is getting back a sense of normalcy and getting back a sense of just the importance of the family unit. And I don't know. Can you speak to that?

Meg Dermody:

Yeah, it does give you back some normalcy. I mean, one of our first things we did when we. After. Because Finn's treatment was pretty intense. Like most brain tumors, we just lived in the hospital. We waited to do all these things until after his treatment. One of the things was a make a wish trip to Disney. And it's. I had said to you earlier, it's comparable to that. Finn's childhood was ripped away for a about a year and a half. He missed out on kindergarten. So to have these opportunities like Camp Sunshine, you go and the whole family is treated. You're all, you. You're all given that attention and just to be able to relax a little bit and not have to worry about everything and know that your kids are. The volunteer ratio is amazing. And to have that relief of my kids are being taken care of, I can relax. As a parent, what are some of

Dr. Lisa Belisle:

the activities that you enjoyed doing for

Meg Dermody:

me or for my kids?

Dr. Lisa Belisle:

Well, both, really.

Meg Dermody:

Oh, the activities at Camp Sunshine, you know, it's really simple stuff. Like they have this thing called the Super Duper Blooper games. And that's hilarious because it's just the adults divided into teams. You're never on the team with your spouse, and. And you do silly games like the kids do, like pass the hula hoop through a circle. It's good, just simple fun that just makes you laugh and laughing and just relaxing is an amazing healing process. It's refreshing it's revitalizing. So that was. That's a funny one to do. And there's a love cup trophy at the end, which is very sought after. And the other activity is always the parents discussion group. It's always nice to just get to know who's in the group that session, hear their stories, help if you can. They can help you continue to support the community that's kind of growing there within the families and for the kids. You know, Finn was. He's in a new age group this year, and so he's in the 9-12s. And, you know, he did different things. He did the rock wall, the challenge course. So there are amazing opportunities for him to grow because the side effects of a brain tumor are pretty severe. And we struggle with him. Even though he's in remission for three years, his cancer doesn't. He doesn't go away. That's why Camp Sunshine's so nice. You can always come back. It doesn't end.

Nancy Cincotta:

Yeah.

Dr. Lisa Belisle:

In our conversation, you were saying that Finn has really noticed some of the things that have been impacted by his brain tumor. Like maybe his balance isn't quite what he would like it to be. And if, as you're, you know, if you're a nine year old, you're. You're out there playing sports with your friends or even just walking down the hall at school. So some of these things that, I mean, yeah, you can get rid of the brain tumor and you can be in remission, but there's still after effects that these kids deal with on an ongoing basis.

Meg Dermody:

Yep.

Dr. Lisa Belisle:

So how about Shayla? How did she like Camp Sunshine, and how does she like Camp Sunshine?

Meg Dermody:

She loves it. She looks forward every time. Every time we come back, she asks when we're going again. She's a little social butterfly, so she makes friends very easily. She picks that one right away when she gets there. So, I mean, she loves it. There's no question she's gonna grow up there. I mean, we'll continue to go throughout Finn's development and, you know, hopefully, like, when we're all growing, when they're all grown up, being so close, I'll come back and volunteer. And a lot of families do that. When they get to a place, they'll come back.

Dr. Lisa Belisle:

And you're now at the stage where you were with Finn when Finn was diagnosed. This fall is where you are with Shayla. Does that bring anything up for you?

Meg Dermody:

It did. I did pretty well, actually, when she got on the bus. I'm doing well now. It was before I would say probably around maybe I was getting a lot of reoccurrence of knowing it wasn't going to happen again, but just experiencing the marker of when it happened to Finn. And I guess I think what really hits home is just having not known for so long. With Finn, it went for three months before we knew. So just kind of. It falls back to that time of we didn't know and this is going to happen, so. But I'm doing okay, so. Because it won't happen again to Shayla. So.

Dr. Lisa Belisle:

Yeah, it's not really a genetic.

Meg Dermody:

No, it's not. There are some brain tumors that are. That they have to test sibling for, but his is not one of them.

Dr. Lisa Belisle:

And then you also have. So you have that possibility. That's the sort of the echoes of what happened with one of your children and that possibly causing you to worry a little bit about the other child. But you've described Finn as being. He's in remission. I think you told me that you have to be five years out before you're considered to be a survivor.

Meg Dermody:

Yes.

Dr. Lisa Belisle:

And they're still following him on a very regular basis.

Meg Dermody:

Yes. We just graduated to every six month scan before we were every three months, every four months. We were every three months for about over two years. Just maybe two years.

Dr. Lisa Belisle:

Yeah.

Meg Dermody:

And then we went to four months.

Dr. Lisa Belisle:

So for you, this isn't something that ever really goes away. It's, you know, there's always the next appointment and you want to, you know, get to the next clean scan, to the next clean bill of health. Yeah, it's something that just, it's kind of there.

Meg Dermody:

Yeah. And a lot of follow up care with all its side effects. It's hearing, it's vision, his vision was affected a lot of things. We know a lot of doctors and

Dr. Lisa Belisle:

you've done occupational therapy, physical therapy, speech therapy. And from what our. In our conversation, you said he's graduated out of a lot of. A lot of therapies. But he's still, he's still being cared for and supported.

Meg Dermody:

Yep.

Dr. Lisa Belisle:

So I guess I wonder how this has impacted you and your husband because it's not an easy thing to go through this in a family. And everybody, you know, you focus on the, focus on the child that is really being impacted or if it's cancer or any, any sort of major illness, you focus on the one who's having the thing wrong with them. But then there's a whole other set of dynamics that goes on. And if you and your husband were ships passing in the night for Some period of time, and you're trying to raise two small children, and he's trying to work. And, you know, how. How did that go for you?

Meg Dermody:

It wasn't without stress, I'll tell you that. Because we handled it very differently. I mean, Tim and I love each other very much, and it. We have that foundation of love, so it never. I mean, it's really. It's really hard to. To go through that. And some couples don't make it because it's so stressful, but we just. We had two different ways of handling it. We complement each other nicely. And he, you know, he was the one. He's an engineer. He was the one making sure everything was done, written down, and don't miss this, don't miss that. And I was more the nurturer, the caretaker, and just kind of focusing on, okay, we don't have anything to worry about, so I'm not gonna worry. So I kind of remained calm. He was a little bit less calm, and it caused a lot of stress because, you know, like, you know, just calm down, Tim. Calm down. But, you know, just like the diagnosis, you muddle through it and you get your space, and we come back at the end and we're grateful and we hug each other. That we're. We have Finn. I mean, the night before surgery was just horrifying. Just looking at each other, looking into each other's eyes, not knowing if we were gonna lose our child the next day. I mean, just facing that was horrible. So wasn't without difficulties, but we did it. The nurse staff would joke to see who was on. Is Meg on? Is Tim on? Oh, Meg's on.

Nancy Cincotta:

Okay, good.

Dr. Lisa Belisle:

Poor Tim.

Meg Dermody:

He's. He. He. He makes sure everything's done. He won't let anybody slide, you know?

Dr. Lisa Belisle:

Well, you know, I think you. That's an important point, is that in most couples, in most families, there's a set of relationships that are, if it works well, are very complimentary.

Meg Dermody:

Yes.

Dr. Lisa Belisle:

So in some ways, you're right. You could be who you were, he could be who he was, and you were both able to really contribute something significant to keeping your family going.

Meg Dermody:

Yep.

Dr. Lisa Belisle:

I'm assuming that's kind of why you got together in the first place, is that you complimented each other. Well, I think we do.

Meg Dermody:

And at the heart, there's love. So, I mean, that just holds us together. We just. To start undying love for each other and for our kids.

Dr. Lisa Belisle:

And Camp Sunshine actually has an emphasis on the parents as well. Isn't there a parents night out?

Meg Dermody:

Yes. With Karaoke. Sober karaoke.

Nancy Cincotta:

Wow.

Dr. Lisa Belisle:

Well, tell me about that.

Meg Dermody:

It's really funny. Like I said, it's more laughs. I mean, they have a nice parent dinner. They take the kids out. They do like the 9 to 12 year olds do an overnight, so Finn got to do that. And then they take the younger ones for a movie late, so it goes till about 10. They serve us usually turkey and stuffing and a really nice dinner. They have the tablecloths out. They have a. They hire a karaoke DJ and it goes.

Nancy Cincotta:

It's.

Meg Dermody:

It's always interesting. It's usually a lot of people setting everybody up for ridiculous songs. So more laughs, which is very healing.

Dr. Lisa Belisle:

Which song did you sing this past one?

Nancy Cincotta:

Mm.

Meg Dermody:

I was set up for pink.

Dr. Lisa Belisle:

Pink?

Meg Dermody:

Yes, because I had pink hair at the time.

Dr. Lisa Belisle:

Okay. How'd it go?

Meg Dermody:

It was fun.

Dr. Lisa Belisle:

It seems like that would be important that you'd have to kind of laugh about some of this stuff while you're going through.

Meg Dermody:

Humor is important. And yeah, you have to kind of develop a, an interesting sense of medical humor going through it that normally you wouldn't joke about, but just kind of have to.

Dr. Lisa Belisle:

Yes, I, when I was going through my own set of surgeries and looking at the various, what that would mean over time, like the actual, like the drains that would be coming out of my body and the scars that would be left, I would just have to look at it and be like, you know, I could cry about this, but you know, this kind of ridiculous really in the end. And so if you can laugh about it, if you can get to that place, it can somehow help you heal, I think. Yeah, maybe a little harder when it's your, when it's a child of yours,

Nancy Cincotta:

I guess it's hard.

Meg Dermody:

We probably took it out in the residence mostly, but.

Dr. Lisa Belisle:

Well, tell me about that because I, you know, I did my training at Maine Medical center and it was Barbara Bush. The children's hospital was just, had just been completed. And I remember that the nurses were so very protective of the patients, especially the patients with cancer. They did not want us experimenting on these children in any way whatsoever. And as a resident and a medical student, I never wanted to experiment. But you know, there is some educational aspect to some of this and you don't have the same long term relationship that say a nurse might. But in the end, I felt like the team that developed around a patient, a child, a family, could really be very strong and helpful and supportive. What was your experience like?

Meg Dermody:

They definitely become part of your. They become family, especially the nurses, because they Are. They are very protective and you get to know them, especially when you spend that much time in the. I mean, we were. We lived there, so the nurses were just amazing there and your doctors. I mean, everybody that plays a role.

Dr. Lisa Belisle:

So I'm just curious, as you are going through this with your son and with your family, what were some helpful things that people did or said when. For you? Because I think that there's always this question, like, I know that this terrible thing is happening. I don't know what to say. And maybe there's. I don't. I won't say anything. What were things that people, when they reached out to you, what. What was useful to you or what was what meant something to you?

Meg Dermody:

I guess everybody's individual way of expressing their support and their love speaks, even if it wasn't anything specific. Whether you're religious or not. I mean, just people praying, not you, but in general, just people thinking about you, really, it carries you a long way. People. My sister set up a supportive meals, so just having people bring in food, feed us, take care of little things at the house. People's individual ways of just showing that they're thinking of you in whatever way that it is, whether it be big, whether it be creating a fundraiser or just, you know, our local librarian bringing over books for us because we don't go to the library anymore. I mean, things like that.

Dr. Lisa Belisle:

So it sounds like in your mind there's not really a wrong answer.

Meg Dermody:

I don't think that's a wrong answer.

Dr. Lisa Belisle:

And is that similar with the volunteers at Camp Sunshine? If they're willing to be there, they're willing to show up.

Meg Dermody:

Yeah. And they're amazing. I always want to take them home with me because they're all just thrilled to be there. They becomes such a. It's a relationship between the families and the volunteers. Something magical happens there at Camp Sunshine and we all get something out of it. You think it would be the saddest place on the earth and it's. It's not. There are very sad times, but everybody appreciates a lot of things. So you don't. You kind of leave the normal life, just the day to day, all those little things that people, like, fuss about and it disappears at Camp Sunshine. It just disappears. So that's why we never want to leave.

Dr. Lisa Belisle:

How many years have you been going there now?

Meg Dermody:

Just. Oh, what was that? 2013. Summer of 2013. So two years. Yep.

Dr. Lisa Belisle:

And you get to go until Finn's 18? I don't know.

Meg Dermody:

Is that it?

Dr. Lisa Belisle:

Well, I think so. I Think that they. I haven't looked at that part yet. Well, I'm just thinking you've got some. You've got a good long time ahead of you.

Meg Dermody:

Yeah, we do. That would make sense. Yeah. Because the teen group, they would graduate of the teen group.

Dr. Lisa Belisle:

And then from what I understand, and I could be wrong. So people who are listening, if I'm wrong, I'm owning it right now. But from what I'm understanding, then there are other ways that you can go back. Even if your child has gotten to.

Meg Dermody:

A lot of people come back and volunteer. A lot of patients come back and volunteer.

Dr. Lisa Belisle:

Well, Meg, I. It does. I always learn something from my conversations. And I really appreciate your taking the time out of your very busy schedule. I know you put the kids on the bus this morning, you know, trying to juggle all of this stuff, and you're willing to come in and talk. I'm gonna give a shout out to your husband because I certainly want him to know that he's with us here in spirit. You represented him well.

Meg Dermody:

You're here, Tim.

Dr. Lisa Belisle:

That's right. You're here, Tim. But I appreciate your talking with us and sharing with us what this has been like to go through. And I encourage people to think about what you might be able to do yourself or people in your community who have children with cancer or even any other sort of serious illness, whatever it sounds like, according to what Meg says, whatever it is that you can do will be appreciated and maybe even a Camp Sunshine volunteering position. Maybe even that. We've been speaking with Meg Dermody, who is the mother of Finn and Shayla and wife of Tim and artist and advocate for Camp Sunshine. Thanks so much for coming in and talking with me today.

Meg Dermody:

Thank you.

Dr. Lisa Belisle:

You've been listening to Love Maine radio show number 213, Camp Sunshine. Our guests have included Michael Cates, Nancy Cincotta and Meg Dermody. Love Maine Radio is downloadable for free on itunes. Follow me on Twitter as DrLisa and see my running travel, food and wellness photos as bountiful1 on Instagram. We love to hear from you, so please let us know what you think of the Love Maine Radio. We welcome your suggestions for future shows. Also let our sponsors know that you have heard about them here. We are privileged that they enable us to bring Love Maine Radio to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Camp Sunshine show. If you like what you've heard, please subscribe to our podcast and take a moment to give us feedback on itunes. Thank you for allowing me to be a part of your day. May you have a bountiful life.

Dr. Lisa Belisle:

She said Baby, I'm sleeping.