Transcription of Meg Dermody for the show Camp Sunshine #213
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.