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: www.campsunshine.org.
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.
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Dr. Lisa: It is 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. It’s kind of an interesting story. Meg Dermody is the mother of Finn and Shay. 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. The high risk thing, that kind of scares me. 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 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? Oh, 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. 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.
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. You ask me how do I do it, I guess is the question. You don’t have a choice. It just happens. You as a mom know that you just … you do anything for your kids no matter what the situation is and you just move forward.
Dr. Lisa: Well, I think about this … I think I’ve mentioned on the show before for the people who are listening that I have always felt it important to support the causes of the Maine Children’s Cancer Program and the Center for Grieving Children. Mostly I would do this as a doctor. I knew it was important, but it was also kind of warding against anything happening to my children. Pretty much as soon as I got pregnant with my oldest who is now twenty two, I began to fear the thing that all parents fear, which is that something will happen to my child. You’re talking about the reality of something really bad happening to your child.
Meg Dermody: Yeah.
Dr. Lisa: Watching him go through this illness and not knowing really what’s wrong and then finding out something’s really wrong.
Meg Dermody: Mm-hmm (affirmative).
Dr. Lisa: You know, you’re right. There’s no choice. It just … it is what is is. This is still your child that you love and you have to move forward with it. This is just so, I guess, unfathomable for most parents really.
Meg Dermody: It is. You kind of go into shock when it happens, I would say. To have everybody around me is supportive … My family, like I said, I grew up in Maine. My husband grew up in Maine. All of my family was close by. They were there to pick up the pieces that kind of fall apart. When it happened, I mean, like I said before, you kind of float through life in a normal pace. You wake up, you send the kids to school, you … Everything’s just dot to dot to dot.
It just falls apart because your new life is in the hospital every day, day in and day out. Something like cancer … It’s not an appendix or anything like that. “It’s a marathon, it’s not a sprint.” Our oncologist would … Said that to us. To take our time and pace it. We had amazing social workers next to us who would just say, “You are your home.” I struggled with that because as a stay-at-home mom, I mean, I create my home and I value it so much.
Just to be ripped apart from your home, your family, your routine … She said to me, “You are their home. For your kids, you are home.” To keep that love around my kids. That was my philosophy going through the whole thing. I was pretty calm going through the whole thing. It was just, “Here, we’re going to make home here now. This is our new normality and we’re just going to do it.”
Dr. Lisa: Now the way you described Finn going into kindergarten was very talkative and curious and vivacious and kind of ready to take on the world. It was the fall of this kindergarten year that he started having these episodes of vomiting. You were just knowing that something wasn’t really quite right with him. Then he needed to have surgery.
Meg Dermody: Yep.
Dr. Lisa: His personality changed and actually his whole physical self really changed after that.
Meg Dermody: Completely changed. This is what’s very sad. I felt like I lost my child for months because after a surgery, some kids … It’s when they go into that area of the brain, you don’t really know the outcome. Finn had a condition called posterior fossa syndrome. It’s just basically the trauma that’s left after the surgery. 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 after he did start talking was, “Where is my iPad?” We got a kick out of that. He was like, “Finally. I can say ‘Where’s my … Get me my iPad.'” I mean that was my biggest struggle was just not being so afraid that he didn’t know what was going on. 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.
No one would ever leave his side. Either Tim or I were right there with him. We were passing ships in the night. 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 one years old at the time. She loved it. She loved the playroom and child life services. Everybody at Barbara Bush is amazing. We did most of our treatment at Barbara Bush and then we went down to Boston for other things.
Dr. Lisa: Yeah. You described that you were still nursing her when you found out about this. You’re still trying to help your one, one and a half year old with her normal development, normal nourishment.
Meg Dermody: Yeah.
Dr. Lisa: Then you’re struggling with this other situation.
Meg Dermody: Yeah.
Dr. Lisa: It’s interesting that she just didn’t know any difference, that she was just as happy. There’s a playroom-
Meg Dermody: It was normal for her.
Dr. Lisa: Exactly. There’s people to talk to, there’s people to interact with.
Meg Dermody: It was exciting for her, which is strange, but … we talk with many families at Camp Sunshine. Everybody has different experiences and the kids that … If they’re already in a routine like going to school, it’s harder on them. For Shayla to be that age and her personality, it didn’t disrupt her too much. We were … I don’t want to say grateful, really, for that situation, but …
Dr. Lisa: 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. 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. 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 … 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. I had said to you earlier, it’s comparable to that.
Finn’s childhood was ripped away for about a year and a half. He missed out on kindergarten. To have these opportunities like Camp Sunshine, you go and the whole family is treated. You’re all given that attention. 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. To have that relief of my kids are being taken care of, I can relax as a parent.
Dr. Lisa: What are some of the activities that you enjoyed doing?
Meg Dermody: For me or for my kids?
Dr. Lisa: Well, both really.
Meg Dermody: Oh, the activities at Camp Sunshine. It’s really simple stuff like they have this thing called the super duper blooper games. That’s hilarious because it’s just the adults divided into teams. You’re never on the team with your spouse. 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 laugh.
Laughing and just relaxing is an amazing healing process. It’s refreshing, it’s revitalizing, so that’s a funny one to do. There’s a love cup trophy at the end which is very sought after. The other activities, 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.
Finn … he’s in a new age group this year. He’s in the nine to twelves. He did different things. He did the rock wall, the challenge course. There are amazing opportunities for him to grow because the side effects of a brain tumor are pretty severe. We struggle with him. I mean, even though he’s in remission for three years, this … It’s cancer. He doesn’t go away. That’s why Camp Sunshine’s so nice. You can always come back. It doesn’t end.
Dr. Lisa: Yeah. 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. If you’re a nine year old, you’re out there playing sports with your friends or even just walking down the hall at school.
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. How about Shayla? How did she like Camp Sunshine? How does she like Camp Sunshine?
Meg Dermody: She loves it. She looks forward to it 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 out one right away when she gets there. I mean, she loves it. There’s no question she’s going to grow up there. I mean, we’ll continue to go throughout Finn’s development and hopefully when they’re all grown up, being so close, I’ll come back and volunteer. A lot of families do that. When they get to a place, they’ll come back.
Dr. Lisa: You’re now at the stage where you are with Finn when Finn was diagnosed this fall.
Meg Dermody: Yes.
Dr. Lisa: Is where you are with Shayla.
Meg Dermody: Yes.
Dr. Lisa: 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 May, I was getting a lot of recurrence of “Is this …” Knowing it wasn’t going to happen again, but just experiencing the marker of when it happened to Finn. I think what really hits home is just having not known for so long with Finn. It went for three months before we knew. It falls back to that time of we didn’t know and this is going to happen, but I’m doing okay. It won’t happen again to Shayla, so …
Dr. Lisa: Yeah. It’s not really a genetic cancer.
Meg Dermody: No, it’s not. There are some brain tumors that are that they have to test a sibling for, but his is not one of them.
Dr. Lisa: Then, you also have … 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. You’ve described Finn as being … He’s in remission.
Meg Dermody: Mm-hmm (affirmative).
Dr. Lisa: 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: They’re still following him on a very regular basis.
Meg Dermody: Yes. We just graduated to every six months scan. Before, we were every three months, every four months. We were every three months for about over two years. Maybe at two years … Yeah and then we went to four months.
Dr. Lisa: For you, this isn’t something that ever really goes away. There’s always the next appointment. That and you want to get to the next clean scan, the next clean bill of health.
Meg Dermody: Yep.
Dr. Lisa: It’s something that just … It’s kind of there.
Meg Dermody: Yeah, and a lot of follow-up care. With all his side effects, it’s hearing, it’s vision … His vision was affected. A lot of things. We know a lot of doctors.
Dr. Lisa: You’ve done occupational therapy, physical therapy, speech therapy. From our conversation, you said he’s graduated out of a lot of therapies, but he’s still being cared for and supported.
Meg Dermody: Yep.
Dr. Lisa: 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. You focus on the child that is really being … Or if it’s cancer or any sort of major illness, you focus on the one who’s having the thing wrong with them. Then there’s a whole other set of dynamics that goes on. If you and your husband were ships passing in the night for some period of time or you’re trying to raise two small children, he’s trying to work … How did that go for you?
Meg Dermody: It wasn’t without stress, I’ll tell you that. We handled it very differently. I mean, Tim and I love each other very much and we have that foundation of love. It never … I mean, it’s really hard to go through that and some couples don’t make it because it’s so stressful, but we had two different ways of handling it. We complement each other nicely. 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.” 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 going to worry.” I kind of remained calm. He was a little bit less calm. It caused a lot of stress because like, “Just calm down, Tim. Calm down.”
Just like the diagnosis, you muddle through it in your space. We come back at the end and we’re grateful and we hug each other that 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 going to lose our child the next day. I mean, just facing that was horrible. It 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. Okay, good.”
Dr. Lisa: Poor Tim.
Meg Dermody: He makes sure everything’s done. He won’t let anybody slide.
Dr. Lisa: Well, I think that’s an important point is that in most couples and most families, there’s a set of relationships that are, if it works well, are very complementary.
Meg Dermody: Yes.
Dr. Lisa: 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: I’m assuming that’s kind of why you got together in the first place is that you complemented each other well.
Meg Dermody: I think so. I think we do. At the heart, there’s love, so I mean, that just holds us together. Just our undying love for each other and for our kids.
Dr. Lisa: Camp Sunshine actually has an emphasis on the parents as well.
Meg Dermody: Yes.
Dr. Lisa: Isn’t there a parents’ night out?
Meg Dermody: Yes. With karaoke. Sober karaoke.
Dr. Lisa: Wow. 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. The nine to twelves do an overnight, so Finn got to do that and then, they take the younger ones for a movie late. It goes til about 10:00. They serve us usually turkey and stuffing and a really nice dinner. They had the tablecloths out. They hire a karaoke DJ. 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: Which song did you sing?
Meg Dermody: This past one?
Dr. Lisa: Mm-hmm (affirmative).
Meg Dermody: I was set up for Pink.
Dr. Lisa: Pink!
Meg Dermody: Yes, because I had pink hair at the time.
Dr. Lisa: Okay. How’d it go?
Meg Dermody: It was fun.
Dr. Lisa: 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. Yeah, and you have to kind of develop an interesting sense of medical humor going through it. Normally you wouldn’t joke about, but just kind of have to.
Dr. Lisa: Yes. When I was going through my own set of surgeries and looking at the various … What that would mean over time, like the actual 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 is kind of ridiculous really in the end.” If you can laugh about it, if you can get to that place, it can somehow help you heal, I think.
Meg Dermody: Yeah.
Dr. Lisa: Maybe a little harder when it’s a child of yours, I guess.
Meg Dermody: It’s hard. We probably took it out on the residents mostly, but …
Dr. Lisa: Well, tell me about that because I … I did my training at Maine Medical Center. It was Barbara Bush, the Children’s Hospital, had just been completed.
Meg Dermody: Right.
Dr. Lisa: 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. As a resident and a medical student, I never wanted to experiment, but there is some educational aspect to some of this and you don’t have the same long-term relationship that, say, a nurse might. 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 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 lived there. The nurses were just amazing there and your doctors … I mean, everybody that plays a role.
Dr. Lisa: I’m just curious. As you were going through this with your son and with your family, what were some helpful things that people did or said when … For you? I think that there’s always this question like, “I know that this terrible thing is happening. I don’t know what to say.” Maybe there’s “I won’t say anything.” What were things that people … When they reached out to you, what was useful to you? Or 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. My sister set up a support of 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 our local librarian bringing over books for us because we don’t go to the library anymore. I mean, things like that.
Dr. Lisa: It sounds like, in your mind, there’s not really a wrong answer.
Meg Dermody: I don’t think there is a wrong answer.
Dr. Lisa: 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. They’re all just thrilled to be there. They become 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 would think it would be the saddest place on the earth and it’s not. There are very sad times, but everybody appreciates a lot of things. You kind of leave the normal life of just the day to day. All those little things that people fuss about and it disappears at Camp Sunshine. It just disappears, so that’s why we never want to leave.
Dr. Lisa: 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: You get to go until Finn’s eighteen.
Meg Dermody: Is that it?
Dr. Lisa: Well, I think so. I think that they … I think-
Meg Dermody: I haven’t looked at that part yet.
Dr. Lisa: Well, I’m just thinking 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 out of the teen group.
Dr. Lisa: 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. From what I’m understanding, then there are other ways that you can go back, even if your child has gotten to aging out.
Meg Dermody: Yeah. A lot of people come back and volunteer. A lot of patients come back and volunteer. It’s a family.
Dr. Lisa: 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’re trying to juggle all of this stuff and you’re willing to come in and talk. I 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: That’s right. You’re here, Tim. I appreciate your talking with us and sharing with us what this has been like to go through. I encourage people to think about what you might be able to do yourself for 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. 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, an artist, and advocate for Camp Sunshine. Thanks so much for coming in and talking with me today.
Meg Dermody: Thank you.