Transcription of Nancy Cincotta for the show Camp Sunshine #213

Dr. Lisa:                                   There are people and organizations who we have on our radio show list and we have them on our list for years and years. For some reason, we don’t quite get to them, but they’re always in the back of our minds and we finally get to them. It’s such a wonderful thing to finally connect. Today, we are with two such individuals from Camp Sunshine, which is a really great organization that’s been around for thirty years?

Michael Katz:                       Thirty one years.

Dr. Lisa:                                   Thirty one years. Exactly. Today, we have with us Michael Katz, who is the executive director of Camp Sunshine. He has been involved with the camp since its inception in 1984. Michael has also acted in the camp community and serves as a board member for both Maine Summer Camps and the Maine Camp Experience.

We also have with us Nancy Cincotta, who is Camp Sunshine’s psychosocial director. She works with campers and their families and she is also on faculty at Mt. Sinai after having worked there for thirty years. Thank you so much for coming in. I know that it’s still … It’s a busy time all the time at Camp Sunshine.

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 mats. 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. Again, since its inception. It becomes part of your life.

Dr. Lisa:                                   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:                       Well, we are a camp that sets up retreats, or respites, for families that have a child with a life threatening illness. What 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 sibling joins us and the whole family spends a week at camp.

We run activities for the complete family. What separates us, and I’ll let Nancy speak a little bit more to that, is we also have a psychosocial program. While mom and dad are enjoying camp, they also have the opportunity to build the community, build resources and get away from the challenges that they face on a regular basis, even if it’s just for a short period of time.

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

Nancy Cincotta:                 Camp is magical in a variety of ways. As Mike was saying, I mean, we provide activities for families, every member of the family, to in a way have an opportunity to get away from the illness. We also provide avenues for people to talk about the illness, so it’s actually 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.

Then, you also can have an opportunity to connect with people on a level that you might not have in other places. 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. 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.

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. 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.

It is a wonderful atmosphere for people to feel, I think, somewhat whole again. 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, leave having had what is a very therapeutic experience by virtue of all the different components of the program.

Dr. Lisa:                                   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.

Michael Katz:                       Correct.

Dr. Lisa:                                   It was for kids with cancer.

Michael Katz:                       Correct.

Dr. Lisa:                                   That was the initial program. 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, our mission, 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. That’s how we 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.

We’ve actually become kind of their national symposium for when they get together. 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:                                   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. Some of those illnesses are very rare. They’re some of the bone marrow failure diseases. Fanconi anemia, Diamond-Blackfan anemia, Shwachman–Diamond syndrome and dyskeratosis anemia.

We’re also starting to do that in the low grade brain tumor community as well. 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. It allows you to be able to make connections that you might then later be able to reach out to those physicians and those scientists.

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. They come and they arrive in Maine and it’s the first time that they’re meeting somebody with that illness. It is a pretty remarkable thing that happens for people in that situation.

Dr. Lisa:                                   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.

Michael Katz:                       Correct.

Dr. Lisa:                                   Part of what you provide is actually transportation from different parts of the globe. That’s a big deal.

Michael Katz:                       Right. We don’t want not being able to get to camp financially or for whatever reason it might be to limit a family from being able to get to camp and experience the resources that are available.

Dr. Lisa:                                   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. I believe you and I were having a conversation because we’re writing an article for Maine Magazine about Camp Sunshine. You were describing some of the treatments for kids with cancer that can cause them to have problems with learning, with perhaps emotions, behavior.

We think about chemotherapy with cancer patients causing hair loss and physical problems. 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. 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:                 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. 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 with 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.

It is a very hard reentry back into the world where everybody is healthy and people don’t have that experience. I think when you look healthy, there is an anticipation that everything then goes back to normal. I think it can be quite a struggle for a child and a family to understand what the impact of the illness was and then what kind of supports that they need. 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.

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. I think that because those things are, again, less visible, it becomes more complicated for the world to understand.

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. I think it’s really hard for parents sometimes because you feel like, “What is your role in parenting? Did you do something or is there something more you should be doing for your child?”

It becomes a different battle when you realize that these may be things that are being faced by a lot of other kids in the community. I think that there’s a tremendous amount of education that needs to happen even after people are off treatment. I think that is a way in which the pediatric world and the adult world are somewhat different. 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:                                   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. 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?” 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?”

Nancy, what you’re saying is maybe they aren’t dying. Maybe there are longer term survival issues and this is all shifted dramatically over the last thirty, thirty one years that the camp has been in existence. 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 then 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?

Michael Katz:                       Right. Well, the camp facility itself is set up with that in mind. Many of the activities are geared towards having that ability for if a child does need some type of accommodation that we can fulfill that need. Other ways that we work around that, too, is we also have a number of volunteers that help each camp session.

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. 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.

We have other items around the camp. In fact to get into the pool, we have a stand, wheelchair accessible mechanical item, that can get the children into 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.

Again, looking at the different varieties of where a child or 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. 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:                                   There’s also room in the schedule for kids to be kids and adults to be adults and then for families to intersect. That’s an interesting thing. There’s … I believe adults have sort of “adults night out”, when the kids are-

Michael Katz:                       Right.

Dr. Lisa:                                   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. What we do at camp is we provide one evening where the children are under the supervision of the volunteers. Mom and Dad … We transform our dining hall into a gourmet café area. They have a nice dinner and then they get to be the stars of the evening as they perform karaoke.

While they’re letting loose and just enjoying themselves for an evening, the children are well taken care of. We have a sleep out with the nine to twelve group. We bring in things such as “Owls of Maine” to entertain the younger children. While that’s all going on, Mom and Dad can just, for one evening out of the week, 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. A couple of years ago, we had interesting experience. A child was out of her group en route to the bathroom with two volunteers and she peeked her head into the games. They’re very funny and people laugh all the time. 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.”

It was 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. Maybe their parents get up and make a fool of themselves in front of everybody. In a way it provides, the activity itself provides, a very encouraging atmosphere. It really does bring people back to laughter and fun and recognizing that they can … Even if they’re in the middle of this illness experience, they can still have fun.

We were 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. Sometimes we will do something creative. We will have everybody wear a bandana over their eyes so that they’re doing the activity without sight, where 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.

There will be an evenness about the experience. We’ve had great luck in really helping everybody see what the world is for the person who may not have sight. That’s one example, but we have that happen in other programs related to the illness as well.

Michael Katz:                       We gear some of the activities for that particular week that Nancy’s referring to. Some of the evening activities are more audio-based. I don’t know if you have heard of, but Rick Charette, who’s big in the community around here, he-

Dr. Lisa:                                   Doesn’t he do something about bubble gum?

Michael Katz:                       He does. He has a song about bubble gum. 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. He comes in and donates his time and talents.

Dr. Lisa:                                   An important component of Camp Sunshine is volunteering. 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. 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 a hotel, very nice hotel-

Michael Katz:                       Hotel suites. Yes.

Dr. Lisa:                                   Hotel suites. 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 quilts. There are so many people that want to give to Camp Sunshine. That’s an interesting place to be because not every nonprofit has the number of people willing to volunteer that you do.

Michael Katz:                       Right. We’ve been very fortunate. It reaffirms your faith in humanity when you see on all levels. 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, “Well, jeez, we’d like to help. How can we help?”

We said, “Well, you know, putting quilts on the twin beds and the bunk beds would be a great start for the families.” They said, “Well, how many?” We said, “Well, we have forty rooms. Between the set of twin bunks … Excuse me, twin beds, a set of bunk beds and a futon, each room required five quilts.” They said, “All right. Well, let’s send this out to the community.”

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 building to decorate it with the quilts, also. You put the call out there and then be amazed at the human spirit that … What comes back.

As far as each camp session, it requires between about eighty and ninety 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 we’re able to run the camp. Each year, probably use in the neighborhood of about two thousand volunteers just at camp sessions. When you were out, you had asked me, “About how many volunteers do you think you’ve used since its inception in 1984?”

Numbers at the beginning weren’t quite as accurate, but I’d say roughly in our thirty one years just in camp sessions itself, we’re probably in the neighborhood of about twenty eight thousand volunteers that have worked the camp. That doesn’t even factor in the volunteers that we use at our pumpkin festivals, at our polar plunges. We’re probably in the neighborhood of about thirty to thirty five thousand volunteers that have made Camp Sunshine happen and we’re very grateful for that.

Dr. Lisa:                                   These are volunteers that you very carefully 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, and actually, we do do background checks on all the volunteers as well.

Dr. Lisa:                                   It’s necessary and important. These are people … 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?” Again, it’s just the experience that happens at camp. They go home and they tell a friend or they tell a coworker and it builds from there. We do. We vet the volunteers between reference checks and background checks.

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. If we have an individual that, say, maybe runs a day camp or a day care at home, more likely than not, we’re going to put them in with our tot-lotters, our three to five year olds. It lends itself to success.

Dr. Lisa:                                   Nancy, your husband is not a volunteer, but he’s employed by the camp and is the medical director. His specialty is … I think it’s pediatric-

Nancy Cincotta:                 Rheumatology.

Dr. Lisa:                                   Rheumatology. He’s a pediatric sub-specialist, but he’s responsible … He’s doing camp medicine, essentially. You’re coming up back and forth from New York all the time. This has been an enormous commitment for you and your husband, so for your family, really. Why have you continued to do this?

Nancy Cincotta:                 Camp Sunshine is a pretty amazing model. 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 got about thirty acres.

Nancy Cincotta:                 We have the ability to do things that, again, are hard to imagine someplace else. Some of it is the combination of this amazing facility and then the people that we have generated. We were talking about volunteers. You think about where would you have a cohort of eighty 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.

I think that the commitment comes from the passion for the program, which really provides a tremendous service to families. 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 in the rollercoaster and how when people get bad news, what that means. We have kids who have surgeries that I think some adults would never feel like they could recover from.

You know that a kid goes into surgery knowing that, “I’m going to have this brain tumor removed and I’m going to in six weeks be at Camp Sunshine. I really want to be there.” 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 this. We become kind of a home away from home, but I think an inspiration through the journey. You become part of that.

You become part of the mechanism that helps people actually live day to day with their illnesses. I think 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, whether you have changed their life, is something that is worth the many hours of commuting and the many years of commuting to do it.

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, to give back to the community. We actually have an amazing donor that enabled us to build a building for family volunteers. We have increasing number of families who’ve gone through the program and then are coming back to help other families.

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 ten years ago, who else could you be more comfortable with than to hand your child over to that person?

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. They want to help and give back to the community that they have come from. You become inspired by watching ten, twelve, fourteen volunteers come and be able to share both their illness journey and their experience with Camp Sunshine. It’s an amazing program.

Dr. Lisa:                                   Mike, I know that all of this requires money. This is why you have some great fundraising events that take place over the year. You have some polar dips-

Michael Katz:                       We do.

Dr. Lisa:                                   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, there’s face painting, and there are a number of carved jack-o-lanterns that they can see lit up. Much like our volunteers that help during the camp session, we have camp families that come out and help as well.

It’s just a nice day and it’s a great day of fun. 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, are the big Monte Carlo weekend.

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. That’s a great way. 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. Very helpful to camp.

Dr. Lisa:                                   Those of you who are listening, if you have a Tropical Smoothie store in your area-

Michael Katz:                       Please visit.

Dr. Lisa:                                   Please visit and tell them that Camp Sunshine sent you.

Michael Katz:                       Yes.

Nancy Cincotta:                 And thank them.

Dr. Lisa:                                   And thank them. What is the website for Camp Sunshine for those who’d like more information?

Michael Katz:             

Dr. Lisa:                                   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. 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 Katz and Nancy Cincotta, 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.