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The Current Transcript for January 25, 2016

Host: Anna Marie Tremonti

IN THIS EPISODE

Prologue:

[Music: theme]

SOUNDCLIP

I went through the main doors of the school and he walked out right when he seen me and I was still watching him loading the gun. Then I ran across the school yelling. I just ran as fast as I can and I just stood there watching him shoot the first guy.

ANNA MARIA TREMONTI: By the time he got to the school it was over within minutes, but it was enough to leave a trail of grief. It's been a weekend of mourning and disbelief and a multitude of questions in tiny La Loche. In a moment we’re asking how the community is coping and what it needs now. Also today, after covering brutal conflict in crisis in several African countries, Anjan Sundaram headed to Rwanda to teach journalism, excited to be in a country praised by the West for its remarkable post genocide turnaround and its progressive president. And then he tried actually reporting.

SOUNDCLIP

ANJAN SUNDARAM: The policeman came up behind me and said, I see you. You're looking and writing. You can't do that.

AMT: His story of the last journalists in a dictatorship in half an hour. And then Demetri Kafinas had a brain tumor.

SOUNDCLIP

DEMETRI KOFINAS: I went in for an MRI and a tech there, after the MRI was over, I was you know walking to leave and he goes yep it's definitely craniophayngioma, and I was like, huh?

AMT: It was benign. An operation was tricky so he left it there. But then it grew and it threw him into dementia in his 20s. In an hour we bring you the story of one man's journey toward profound loss and the turnaround that brought everything back. I’m Anna Maria Tremonti. This is The Current.

La Loche, Sask., struggle to cope with tragic mass shooting

Guests: Erin Collins, Connie Cheecham

SOUNDCLIP

[Music: country music]

I don’t know how we’re going to recover from something like this I don't know how anybody moved on from this. Like, four lives were taken from this at the school and their home where they're supposed to be safe. They're supposed to be safe in the school and at home and yet they weren’t.

ANNA MARIA TREMONTI: Well, Erin Sylvester emits the sounds of a candlelight vigil last night for the victims of Friday's mass shooting in La Loche in northern Saskatchewan. There are only about 3,000 people in La Loche and they are reeling from what happened Friday. Two teenage brothers, a teacher and an educational assistant were killed. Seven others are in hospital with gunshot wounds. A 17-year-old youth has been arrested and charged with multiple counts of first degree murder and attempted murder. And of course, under the rules of Youth Criminal Justice and the act of youth criminal justice, we cannot name him. He’s scheduled to make his first appearance in court this morning. As that process begins, the community is facing a week like no other. CBC national reporter Erin Collins has been in La Loche this weekend and he joins us now from Buffalo Narrows, Saskatchewan, just south of La Loche. Hello Erin.

ERIN COLLINS: Good morning.

AMT: What's it been like in La Loche since that shooting?

ERIN COLLINS: Well, I think that obviously the people here are coming to grips with something that you know, is difficult to comprehend and this is a community that's been described as very tight knit. And I think that's a very fair description. This is a very, very remote community. It's really, it's at the end of Highway 155 here in Northern Saskatchewan, about 700 kilometers north of Saskatoon so, when you’re here, you really feel like you could be at the end of the world. You know, a very small place. One main road, cluster of homes, a local rink, very intimate, very small, all kind of perched on a frozen lake here. And when you live in a place like that so removed from everywhere else; so isolated, I think the people here grow very close to their neighbours. When something like this happens they all, they share the experience together. You know, just a quick story to illustrate a little bit about sort of what this community is like. I was at the Sunday mass yesterday morning chatting with people as they were on their way and I struck up a conversation with a woman named Albertine Janvier. Of course, she shares a last name with one of the victims in Friday's shooting, 21-year-old teacher's assistant, Marie Janvier. So, I ask Albertine you know, is she related to Marie and she says well no, not really, kind of. She's a distant relation but of course, she knew Marie and her family very well. Now you sort of fast forward throughout the day. Later that day I'm listening to the acting mayor of La Loche speak after he's met with The Premier and the politicians. Of course, he's also a Janvier. Kevin Janvier, also unrelated. Turns out later as we're speaking with other members of the community, Marie Janvier’s father is also named Kevin. So, you know, it's a very, very small community, a lot of shared history here; a lot of shared names here. And this is really one of those places where you know, not only does everybody know everyone but there's a pretty good chance that most people, or many people are maybe even related on one level or another. So when a tragedy like this comes to town, no one's spared, dealing with the grief kind of—

AMT: Yeah, yeah. And so I'm wondering how they've reacted to the sort of-- the influx of politicians and media and the Premier's there, came yesterday. How’d they react to all of that?

ERIN COLLINS: Well, you know, obviously that's overwhelming especially given the size of this community. I mean, just the number of RCMP officers here is overwhelming. They’re literally on every corner right, which is expected and it's a good thing but it's certainly not situation normal here. And you know, satellite trucks are not something that you’re used to seeing in downtown La Loche. So, you know, this is a community that’s in shock and that certainly didn't help. That kind of shock is expected but I kind of sense this was also a community that was starting to get on with sort of the hard work of healing; looking at why this happened in their town. And one thing I kept hearing over and over again from people was that this is, it's a community with a serious drug and alcohol problem. People were very blunt about that. I spoke with a man outside of that same church service I mentioned earlier. He said that he had struggled with addiction for most of his life. The church had managed to sort of help him sort his life out and turn his life around but that a lot of others, especially young people weren't so lucky. Another fellow I spoke with said that he kind of feels surrounded. You know, there's drugs, there's gangs, there's these all night party houses is how he describes them, that are that are really everywhere. He said he feels kind of trapped in his own home and then you have an experience like this, you have a tragic event like this and of course, The Premier is here, the National Chief of the Assembly of First Nations here, Federal Cabinet ministers here and of course all of us media are here turning the spotlight on this community. And I'll be honest, a lot of people aren’t very happy about that. There's a bit of a sense of resentment towards us which I also think is pretty understandable but I'll tell you another quick story—

AMT: Well, let me just ask you though as we talk about the-- you make the point there are a lot of RCMP there.

ERIN COLLINS: Yeah.

AMT: Do we know, do you have any more of a sense of what went down at that school?

ERIN COLLINS: Well, this is stuff that obviously people are talking about. I mean the community has--there's a lot of people with a lot of opinions and a lot of ideas about what happened. Obviously you played that very powerful tape from a young person who was inside the school. It's just conjecture at this point though. We don't, that's the stuff that's going to come out further down the road when we get into court and so on.

AMT: Now there are those who are already saying they want the school torn down?

ERIN COLLINS: That came out yesterday at the news conference when sort of the politicians came out of their closed door meeting and it was the acting mayor who first brought that up but the NDP and the MLA for the area also mentioned that she would support that as well. The idea being that, you know, the building represents the trauma. And the trauma won't go away unless the building goes away. Of course, there's a whole other load of problems if you if you knock the community school down. Where the children go? How do you get back to a sense of normalcy in a community like this if the school is not there anymore? So, that's certainly an idea that was put forward by some leaders here. I'm not sure if it's realistic or not.

AMT: Is it clear how long it will take before the students in that community can go back to school?

ERIN COLLINS: It's you know, what it's a terrific question and I think it's, when you talk about that sense of normalcy especially if you're if you have kids and you understand the importance of that structure and getting back to school that's an essential step. It's something that the Premier was asked about. It's something that the Public Safety Minister was asked about. The answer, really from them was you know, the kids will go back when their parents feel comfortable; when the community feels that it's safe to go back. And right now, this is a community that's feeling some very raw emotions. So, really when is that, tomorrow? Next week? Next month? It wasn't clear. But not before the folks are ready to send their kids back.

AMT: And the 17-year-old whose charge is supposed to be in court, but in a different community, am I right? Or is it in La Loche that—

ERIN COLLINS: No. It's in Meadow Lake which is you know, they say, sort of a neighbouring community. I think that actually might sort of sum up this kind of community the best. It's four hours away right, so it's four hours on not a great road. So that court appearance is expected to happen some point today. We don't know a whole lot about it. I would imagine a first appearance is going to be quite brief, but that’s happening in Meadow Lake about 400 kilometers away.

AMT: It speaks to the remoteness again on what’s available in the town itself.

ERIN COLLINS: It does.

AMT: And what is not available.

ERIN COLLINS: And there's-- it's a place that at the wrong time of day, if you’re coming from a big city, simple things that you would expect aren’t there. It’s very difficult to find a meal. So, I mean there's just, it's a different kind of community and it's an adjustment for us being here. And it's an adjustment for the folks here who are in the process of dealing with this terrible, terrible tragedy to have all these people essentially in their in their home because the lines are blurred when the place is so small. And there has been some, there has been some resentment towards the media here. There is the--we've been sort of told that we were not wanted by some folks, certainly not by everyone. But it's a sentiment that I can understand—

AMT: It’s kind of overwhelming.

ERIN COLLINS: It is and you get that sentiment from folks. Why do you only show up when bad things happen here? There are good things here. Why is it that you're here again when something bad happens? It almost makes them only reflect on the negative aspects of their community and there certainly are many positive aspects here, many, many nice good solid people that I've met while I was here.

AMT: Okay, well Erin Collins, thanks for your time this morning.

ERIN COLLINS: You bet.

AMT: ERIN Collins, national reporter for CBC News. He joined us from Buffalo Narrows, just south of La Loche, Saskatchewan. He’s reporting out of La Loche, of course, throughout all of this.

SOUNDCLIP

DON HERMAN: Most of the community in northern Saskatchewan say that alcohol and drugs is the problem. And most of the people around the communities are afraid to talk about it because if they do, and anybody got charged and goes to jail, that person comes back, they’re going to be going after that person. And we know that La Loche, the community’s dealers knows, the cops knows, the people surrounding knows what's going on this community regarding drugs and alcohol. I know what I'm talking about. I'm surrounded by drug dealers. I'm surrounded by party house. I'm surrounded by bootleggers. I’m surrounded by a block that is always alive 24/7. And I reported so many times. They think I'm joking.

AMT: That is Don Herman who spent his entire life in La Loche. He's the uncle of the two brothers who were killed inside their home. 17- year- old Dayne, and 13- year- old Drayden Fontaine. Connie Cheecham is as a Human Resources Coordinator with the Clearwater River Dene Nation. She spent a lot of time thinking about what needs to change to address the deeper problems in this community and we've reached her at her home in La Loche. Hello Connie.

CONNIE CHEECHAM: Hi, Anna Maria.

AMT: First of all, let's just talk about what happened on Friday. What went through your mind when you heard of about all of this happening?

CONNIE CHEECHAM: Well, it was just you know, unbelievable. You just couldn't fathom the whole you know, everything. You just couldn't comprehend what was happening. So it was more a physical reaction. You know, the stress related reaction Friday, and I just stayed home with my daughter. I just, you know, and then Saturday I felt more like an emotional reaction. And yesterday you know, I went to church and I felt so much better there.

AMT: And then what are your neighbours saying? What are you talking about as you meet your neighbours?

CONNIE CHEECHAM: Well, I've spoken to you know, a couple of my teacher friends just to see how they're doing and to provide support to them. And we spoke about you know, some of the needs that need to happen at the school level as well.

AMT: You just heard that clip from Don Herman talking about the problem with addiction and alcohol and drug abuse. How do you respond to what he says?

CONNIE CHEECHAM: He's absolutely correct in that assessment. It’s at a crisis level and it has been for a while. And I remember saying to a reporter From Star Phoenix when we sat down with them regarding you know the rash of suicides that were having in this community. And at that point I did say that we are at a crisis point and that we need some supports from elsewhere including our community. As well, we need to rely on the internal resources of our community as well.

AMT: I want to ask you about that. We've heard a lot about the suicide rate being three times the national average; the suicide rate is so high. What does that mean in real terms, what kinds of things you seeing in your community?

CONNIE CHEECHAM: Well, in terms of the suicide rate like I've you know, talked to some young people like my daughter and her friends when I we first moved back here in 2005. That's when, that summer, when it's—no, 2007, that summer is when the suicides started to happen and it just kept going. And that was the first time you know, my daughters have heard about suicide and it was so difficult for them to deal with that. We had to get counsellors. You know, and their friends. We had to support their friends. And so she was saying that everyone knows from that either you know, tried to commit suicide or succeeded with suicide. So, everyone does know someone. We have a lot of kids that need to be heard and this is just you know, a sign, a cry for help.

AMT: Connie, what you need in that community that you don't have?

CONNIE CHEECHAM: Well, I think we need to focus really on the young people, the children that are at the elementary level, we need to really focus on these kids in the high school, especially. We need supports for them. We need counseling and when I was talking to some teachers, you know, they were talking about how we need psychological assessment being provided for some of the students. So, they go kind of to get lost in the system these days, fall through the crack that way. Some of the kids that are not helped when we know, teachers would identify certain kids that would need help but again, there didn't seem to be any follow up.

AMT: Well you don't have psychologists or psychiatrists who live there, do you?

CONNIE CHEECHAM: No. And—

AMT: Doctors fly in?

CONNIE CHEECHAM: Doctors fly in and then we have some doctors that live here that are on call. But our needs aren't being met even at the hospital level. That's also, for me, a broken system. At the hospital level there is very--there's other issues that, in terms of the needs we do need to address some of the needs that I spoke about. How the kids need a lot of counseling support, both traditional and Western. You know, we need to coordinate these things together at the community with these systems of outside help.

AMT: You mention traditional. This is an area that you have said in the past is lacking as well; the link to your traditions, the Dene tradition.

CONNIE CHEECHAM: Yeah, the young kids are seen as losing that connection. The one wonderful aspect is that we see is we are still hanging on to our language and that language is our connection to the elders when we can speak to the elders about our pain. And the elders, when they talk, like will we listen to from healthy elders and they speak you know, it really makes us mentally—Like, for example you know, I'm compiling some concepts for traditional words of advice. Over the years that I've learned from my parents and then I'm verifying some of the concepts with elders just you know, to promote mental wellbeing for our young children; that they can hang on to some teachings and empower them to be successful and to live healthy lives.

AMT: Talk to me a little bit more about the town, though. What do you need to do to keep--this is a town without a coffee shop, you’ve got a couple of bars. You don't have restaurants. You don't have a movie theater.

CONNIE CHEECHAM: No. The kids are very bored here and it's a real issue. I mean the kids can you know, go with some of their families up north to do some traditional activities, but not every family has you know, access to vehicles and all these necessities to do those things, or to even have a cabin up north. So, we need to create an outlet. They need to go somewhere you know, in a building where they can feel safe and feel free to do these things like, to access resources, and computers. We need a youth center and I know that there's been talks of you know, maybe putting a proposal in and I think that's already in the works. But we do need that youth center geared only for the youth to provide supports for them. They need a place where they feel safe; where they can be heard.

AMT: Do you think that played into what we saw unfold on Friday?

CONNIE CHEECHAM: Well, I cannot speculate what played into that horrific tragedy. But I believe if this individual needed help and he didn't receive that help

AMT: Okay.

CONNIE CHEECHAM: And to prevent you know, more kids falling through the cracks. We need intervention from Northern Lights school division, for them to provide ongoing access to a psychologist to do assessments and to identify some support.

AMT: Okay, Connie—

CONNIE CHEECHAM: A lot of those things.

AMT: Yeah. Connie Cheecham, we have to leave it there but thank you for your perspective on all of this today.

CONNIE CHEECHAM: Okay. Thank you.

AMT: That is Connie Cheecham, Human Resources Coordinator with the Clearwater River Dene Nation and advocate for traditional languages. Well, she joins us from La Loche, Saskatchewan.

Rwandan president 'extremely effective at crushing dissent,' says author

Guests: Anjan Sundarme, Fred Muvunyi

AMT: That's the sound of celebration in Rwanda an entire stadium of people singing dancing cheering wildly. After the 2010 election of President Paul Kagame a he had been elected with a resoundingly 93 percent of the vote. And those cheers must have still been echoing inside his head when he went to the people again, last December. This time, in a referendum to change the rules and extend his term limits and clear the way for a third Paul Kagame presidential term, that vote was a landslide victory too despite heavy criticism on the international stage. Here is President Paul Kagame responding to his critics.

SOUNDCLIP

Time as you know something [unintelligible] the majority of Rwandans have chosen dictatorship. I think that is giving dictatorship a good name. If a dictatorship means, one, the choice of people, two, if a dictatorship produces securities, stability, women in Parliament, it’s about people living together where the past has been terrible and different. If that amounts to dictatorship, then, what can I say?

AMT: The president says he has the Rwandan people behind him in his bid to run again but despite that support and the public jubilation the journalists who cover Rwanda say there is a darker reality at play. Anjan Sundaram knows those journalists better than most; he has been their teacher in the capital city of Kigali. Anjan Sundaram has documented their experiences in his book, Bad News: Last Journalists in a Dictatorship. As part of our occasional series on Eye on The Media, he joins me in Toronto, hello.

ANJAN SUNDARAM: Thank you, Anna Maria.

AMT: What did you think as you were listening to that Paul Kagame clip?

ANJAN SUNDARAM: He's been extremely effective at crushing dissent, crushing independent voices. There is no real opposition in the country today there is no voice that opposes the voice of the government and Kagame after accomplishing this comes out and says, “If you want to know what the Rwandan people think, ask them.” Knowing very well what they will say because his force is so powerful.

AMT: So we heard that rally too, what is that like being at a big rally in Rwanda when you see outpourings of support?

ANJAN SUNDARAM: It's like being at a devotional gathering. People in Rwanda see it as a duty to come out and show their support for Kagame because they know the local authorities are watching. Kagame has been very effective at sending out local authorities to gather the vote. The authorities reach the smallest unit, almost every family. This is how Kagame manages to obtain incredible turnouts, figures like 93 per cent of the vote. Recently when he changed the Constitution in December, apparently 98 per cent of the country supported that change.

AMT: And so if you're a journalist at one of those rallies, what's happening behind the scenes?

ANJAN SUNDARAM: The policeman came up behind me and said, I see you. You're looking and writing. You can't do that. And I said, why? Isn't this a public space? Anyone can come here and watch Kagame. And he said, people are watching you as you write. And I could sense the nervousness in the policeman. Rwandans have an oral culture, when they see someone writing, it's like recording the truth. As long as the truth remains oral, the regime can massage that, manipulate that, and change reality change your memories. And the policeman said to me, if you need to know anything. Ask this Rwandan man next to you. Then if you write something wrong, we'll know who to go to.

AMT: Wow. How did you respond to that?

ANJAN SUNDARAM: The policeman went away and my Rwandan friend said to me that he was a part of the Secret Service and I said, Why? And apparently, the policeman was being nice to me. Only powerful policemen are nice to me. And so I put my notebook in my back pocket and began to write on my hand on the inside and to hide my notes I held my hand in a fist.

AMT: That's incredible. So this is about the control that the Kagame government has on the Rwandan people, give me another example of what's going on.

ANJAN SUNDARAM: On the surface it looks like Rwanda has changed a lot since 1994, since genocide. But in reality the country hasn't changed that much. The entire country is divided into little villages. Each village has about 100 families. Each of those 100 families has a chief and an informer and orders from the center are passed to that village through a very efficient chain of command. This is an extremely powerful and effective system when Kagame orders plastic bags to be eradicated from the country they disappear overnight because every village goes to work and takes away their plastic bags. And the same system was used to execute the genocide. When the order to kill was given, it was transmitted through a similar mechanism to this last village in the most remote corner of the country. And people, an hour later, set out with their machetes. And Kagame instead of dismantling the system has chosen to retain it and reinforce it and use it for his ends.

AMT: Well you tell another story of going into villages, it's got to do with thatched roofs, tell us that story.

ANJAN SUNDARAM: So I'd heard these rumors that people were homeless in the country. It wasn't being reported in the local press and a journalist told me about them. And so we set out to investigate. We reached these remote villages and I was shocked. I was walking through villages with huts whose roofs were on the ground. People were living outside had contracted pneumonia malaria. They were really in horrific conditions it looked like a war zone. And yet I could see no trace of violence, no trace of aggression. And I asked one of them, Who did this to you? Was it the army, was it the police? And I was shocked by his answer he said, No we did. And apparently Kagame in one of his speeches had said that these thatched roofs were primitive. And the local authority, as often happens in a dictatorship, in their zeal to please the leader. They set out as soon as Kagame said this and told people to tear down their roofs. And the people climbed on top of the thatched roofs and began to tear the thatch out. And then the people ask the local authorities, “Okay now where do I live?” And the local authority said, “Well we'll have to wait until the replacement houses are built.” And this showed me the danger of not having a free press in the country, how powerful the government can become. The people knew that they had no recourse to justice, the local authority told them to take down their roof and they had no choice no one was going to speak up for them, so they obeyed.

AMT: So, and you were teaching journalism at the time, is that a story your students would have jumped at?

ANJAN SUNDARAM: Even if they knew about what was happening they would have been too afraid to report it because this was a case of the government doing harm to their people.

AMT: And they wouldn’t have been able to report that.

ANJAN SUNDARAM: Not at all because the local authorities were at fault.

AMT: And they would have suffered some kind of repercussions.

ANJAN SUNDARAM: Yes, they would have been imprisoned, their lives might have been in danger, and they might have had to flee the country. I came to Rwanda in 2009 to teach a group of 12 journalists. None of them are practicing anymore. One of my colleagues was shot dead on the day he criticised Kagame. Two girls were sent to prison for many years for insulting him and for saying that Rwandans were unhappy with their leaders. Two other journalists are in exile in Sweden. Another joined the President Kagame’s propaganda team and the others simply abandon journalism because it got too dangerous to practice.

AMT: So when they came into your class, who were they? Were they already journalists?

ANJAN SUNDARAM: Yes, they were experienced journalists and they were working for Rwandan outlets and that's the situation today as well. There are great journalists in Rwanda, they're just afraid to practice. And very soon after I began teaching those journalists in Rwanda I realized these were some of the last independent journalists who dared to counter the regime because they felt that society was moving in the wrong direction and someone needed to speak up about it. Today there is no opposing voice in Rwanda. I remember a journalism conference at a hotel when the government was promising to reform the media. And these two elderly journalists stood up and they pointed at the officials on the podium, the government officials, and they said to the government officials, during the genocide there was no free media in our country. There was only one voice, that was the voice of the government and that government told people to kill. How different is our country today? And they were so angry.

AMT: Tell us about Gibson.

ANJAN SUNDARAM: Gibson was one of my favourite students. He was a quiet man, he sat in the back of the class, and I discovered him when I read one of his assignments, a story about a clinic, and the writing was beautiful, simple but beautiful. He studied philosophy and he often spoke of Hegel, and the dialectic and how to apply to his life he saw himself as opposing the government and his opposition is leading to a greater truth. I watched Gibson descend into a kind of paranoia and I watched the regime ruin his mind until he became useless. The regime didn't need to shoot him dead, didn't need to imprison him or torture him. Purely through paranoia, by turning his friends and his family against him, they ruined his ability to think and to function here.

AMT: You make a point, sometimes its other journalists who actually intimidate journalists who want to report the truth.

ANJAN SUNDARAM: It often is. People show their loyalty to the government unfortunately by turning on their own. And this is a very insidious way of controlling people. Their one government uses informants whether it's your neighbour, your family member, sometimes people don't even trust their parents.

AMT: And Gibson starts to even censor himself. You talk about at one point he's writing a series of articles that have to do with health and he writes about, how do you make sure your children are not malnourished and what steps to take. But he never goes to the accountability part of that because there is one and he knows it's there.

ANJAN SUNDARAM: Yes. He basically provides a solution without stating the problem because to state the problem that there is malnutrition in Rwanda would have been criticizing the authorities. And so he knew that that would have been dangerous so he simply said, I'm going to provide information to mothers so they can feed their children better. It was a clever way, without confronting the government, of providing information to the public that would improve their lives.

AMT: Anjan Sundaram stay with me, I want to bring another perspective in from Rwanda. Fred Muvunyi, he was the first chair of the Rwanda Media Commission, the RMC, a body set up in 2013, ostensibly to help journalists and keep them independent from government control. Fred Muvunyi says when he tried to do that he found himself in a dispute with the government. This is how he describes what happened after the BBC made a documentary that questioned Paul Kagame’s role in the genocide.

FRED MUVUNYI: In 2014, October, the Rwandan government suspended the operating agreement under which the BBC's retracts radio service broadcasts as an act of retaliation. So I disagreed with the government's decision. They had asked me to suspend BBC but I was not up to that.

AMT: So when you refused to suspend the BBC, what happened?

FRED MUVUNYI: In the meeting, actually this is that it was okay if I disagreed with them. But then when I started to even disagree with them in public, that's when it became wise to me and some people called me, threatening me, and you know, accusing me of serving for an interest instead of serving London interests.

AMT: What kind of threats were you getting?

FRED MUVUNYI: Saying that I will not succeed. I will be treated as an enemy, and whoever knows the Rwandan context, knows what an enemy of state means. They were accusing me of treasonous acts, if I may put that in that way.

AMT: In other words, something that could lead to some kind of imprisonment or arrest?

FRED MUVUNYI: Yeah, exactly... [crosstalk]

AMT: Or worse.

FRED MUVUNYI: In April actually, there was another scenario when they came up with a draft proposal. They wanted to take some of our embassy powers to [unintelligible]. So when I disagreed with the government even on this, they tried to negotiate me so that they can give me some money and some promises. But when I refused, that's when they started to try to see how they eliminate me or even how they can remove me from that office.

AMT: When you say, eliminate you, what do you mean? Eliminate you from the office?

FRED MUVUNYI: It carries both. They are two ways actually. One was to remove me or take me off as the chairman of Rwanda Media Commission. But the other was even to kill me because someone tipped me off and told me that if I had refused the government offers, then I know what it means, I would be eliminated.

AMT: And this I'm guessing is what made you flee the country?

FRED MUVUNYI: Exactly, exactly. And I had, of course, some help from international organizations even embassies that helped me. Some had information that I didn't even have so they helped me to get out of the country.

AMT: So you were at that great a risk?

FRED MUVUNYI: Yeah. You can imagine. You know I have my family in Rwanda; I have my little boy, my son, who is six years-old. I had three, which was not easy for me. So you can understand the heaviness of these reasons. That led me to flee my country.

AMT: And is your family still back there or have they managed to join you? And how is their safety?

FRED MUVUNYI: I don't know, I don't know. From since I left, it was in May, I had to wait until July. In July, that was the time I was able to speak again to my son. But from that time, it was not possible, I don’t know what happened. I have suspected that the government warned my ex-wife not to talk to me.

AMT: You're in Bonn now though, you can you can't go back can you?

FRED MUVUNYI: For now I cannot because I have seen some signs that it will not be safe for me. But otherwise I wish to go back to my country and serve my country and continue to serve the public as a journalist.

AMT: What do you think they would do if you went home?

FRED MUVUNYI: What they wanted to do when I was in Rwanda.

AMT: Do you then consider Rwanda, at this point, to be a dictatorship?

FRED MUVUNYI: Who can dispute that? I don't think there is anyone who can dispute that.

AMT: And yet in the West, there's still this perception that somehow Rwanda has made a remarkable recovery after the genocide and it is a great success story on many levels including politically.

FRED MUVUNYI: Well, I have to say that is true, there is remarkable progress since 1994, a country that has gone through genocide, and about a million people had been cured. And the survivors and even perpetrators have tried to be together and work together to develop the country. Of course through the leadership of the current ruling party, Rwanda Patriotic Front, that is true. There is a remarkable progress. But when it comes to governance, democratic governance, it's another story. When it comes to human rights, it's another story. When it comes to freedom of press, it's another story.

AMT: So that is Fred Muvunyi, a Rwandan journalist, former chair of the Rwanda Media Commission. He fled Rwanda last year he was speaking to me from Bonn, Germany. Anjan Sundaram, what are you thinking as you listen to him? Does that reflect what happened to your own students?

ANJAN SUNDARAM: Absolutely. And I have to say first of all that, I admire people like Fred so much. Yes, I would see often, people who pose no legitimate threat to the government but who simply wanted to do their work and inform the public, like Fred. They would begin to receive threats and have to flee the country.

AMT: You know you're there for five years, you're working with them you're watching that paranoia, you're seeing what it means. How does all of that affect you as you're there?

ANJAN SUNDARAM: In the beginning, Rwanda was an amazing country to live in I went there to write my first book on Congo and it was quiet, it was clean. I had electricity and water. I was one of the lucky six per cent in the country who had electricity. But everything functioned and it was wonderful. Over time, I began to realize as I worked with journalists. I began to enter the world of repression and fear that many people lived in. At the end of my five years, it became very difficult to stay on.

AMT: You make the point too, that it's not solely the journalists. At one point, I think it's Gibson, you're looking at a road, a big well lit road. And there's nobody walking on it and Gibson says to you, where the people? Aren't you curious, where are the people? And then he makes you look, not very far from where you live, where it's not lit up and everybody's walking home where it's dark because they don't want to be watched.

ANJAN SUNDARAM: Gibson taught me how to look in a dictatorship. When he showed me that road, that road was a symbol of Rwanda’s progress. It was well paved, well lit. It was what all the diplomats and foreigners pointed to, to say Rwanda has come so far from the genocide. He showed me that we can look at the same thing and we can see something completely different. The world can see a symbol of progress and development in Rwanda. And the people can see a place where they must be fearful a place where the government can watch them.

AMT: You had another student named Roger. His story ended up being very different from those other students. Tell me about him.

ANJAN SUNDARAM: Roger came to me asking for help to flee the country and he said his life was in danger. I said I couldn't do that I don't help people get out of the country. Those journalists who choose to stay, I help them do their jobs safely as possible and as best as I can and they can. Roger began to show me things that the government wouldn't want people to see. He showed me these huts where people were doing themselves harm. No one was reporting this, he took me inside and I really trusted him until I realised that he was in fact working for the government.

AMT: A Secret Service agent.

ANJAN SUNDARAM: Yes, exactly. He works in counter-intelligence, this is his training. He is trained to go into the enemy camp and gain their trust and become one of them, and I was told even to kill his own people in order to prove his loyalty to the other side. And to be honest, I was frightened.

AMT: Why do you think he was told to spend time with you what was that about?

ANJAN SUNDARAM: It was probably because I had helped my students flee the country. And the government, of course, must have found out about this and the government must have been concerned. They wanted to find out whether I was part of the opposition network there’s a significant opposition at work outside the country that even has loyalties in the Rwandan army and poses a significant threat to Kagame. I believe that the government would have wanted to find out whether I was linked to those groups in some way. And I believe that the reason I was safe, in the end in Rwanda, was because they found out that I had no connections, I was simply someone trying to train my journalists, and I was trying to help them be safe.

AMT: The story we hear about Rwanda is very different from the story you tell in your book. You do talk to people who are diplomats and embassy people and I get the impression that they know as much as you know. But they don't say anything either. And we're talking about foreign diplomats.

ANJAN SUNDARAM: This is what stunned me; I thought the diplomats didn’t know. I went up to them and I said, look at what's happening, and they said, we know. Rwanda is actually a paradise for development officers. It's one of the few places where the government’s instructions are carried through to incredible extent of the population. In other countries like India, if development officials tell people to wash their hands, it's a challenge, it’s an uphill task. In Rwanda, the government says, wash your hands, everyone's going to wash their hands. And development officers, to be honest, find it a sort of paradise. They drop their plans, the development projects are carried through, and many of the officers get promotions for having carried out their program so successfully. It's not in the diplomats’ interest to reveal the repression. They benefit from it in a perverse sort of way.

AMT: Well Rwanda gets, what is it, a billion dollars in aid from the west every year, forty percent of its annual budget. If there is a political awareness of the leadership of Paul Kagame, in fact when he held the referendum that gave him the power to run again and change the constitution and run again the US denounced that like there are that there are governments on the record with that. But what is it that keeps things just moving forward on that track?

ANJAN SUNDARAM: With gummies most recent announcement that he's changing the constitution to run for a third term, potentially stay president until 2034. It's become increasingly uncomfortable and inconvenient for foreign governments to support him publicly. I believe that Western governments are going to distance themselves from him. But I don't know if they're going to stop sending him money. And this is always been the case, during my time in Rwanda as well. I would talk to the diplomats about the repression, about the exile of journalists and not only journalists there were dozens of politicians, teachers, academics, all sorts of people who were fleeing the country because their lives were in danger. And when I would talk to the diplomats they said yes we’re raising it with the government. But the Rwandan government knew that come the weekend they would receive their cheque.

AMT: So let me ask you, you have left Rwanda, you've written about these journalists, have you put them in greater danger by documenting their stories?

ANJAN SUNDARAM: There are no journalists operating independently in Rwanda today. In fact, those journalists who stood up to the government and have been exiled or silenced, their names are largely unspoken because they're seen as enemies of the state. My purpose in writing this book was to document and put on the record, the stories of these journalists who saw early where their country was heading, so clearly and so true, and they stood up to it and they suffered. I wanted to make sure that their stories were not forgotten.

AMT: What about you, can you go back to Rwanda?

ANJAN SUNDARAM: I wouldn't try. There have been press in Rwanda calling me an enemy of the government, and enemies of the state as Fred mention have turned up dead.

AMT: Do you fear for your safety, still?

ANJAN SUNDARAM: Foreigners outside Rwanda have been threatened. Canadians have been threatened. In Canada, and to be honest I don't know, but we’ll have to see.

AMT: Lots to ask about as we move forward in terms of what our own governments are doing. Thank you for coming in.

ANJAN SUNDARAM: Thank you so much Ana Maria.

AMT: Anjan Sundaram, journalist, and the author of Bad News: Last Journalists in a Dictatorship, he spoke to us in our Toronto studio. Now we did contact the Rwandan High Commission in Ottawa for a comment on this story, no one was made available. Let us know what you think of what he had to say, you can tweet us we are @thecurrentCBC. You can find us online at cbc.ca/thecurrent. If you’re joining us partway through, and you want to listen to whole thing you can download the podcast from the site or listen right there. And find us on Facebook as well. Stay with us coming up next mind and matter the story of a man, his benign tumor, and the measure it took to reboot his memory. I'm Anna Maria Tremonti, this is The Current on CBC Radio One, Sirius XM, and online on cbc.ca/thecurrent.

How a man with a brain tumour rebooted his memory

Guests: Sheila Singh

ANNA MARIA TREMONTI: Hello, I'm Anna Maria Tremonti and this is The Current. It's estimated that about 55,000 Canadians are living with brain tumours. Every day 27 people are added to that list. While they are rare, still with those numbers, they can be devastating even when they are benign. For tumours that are not cancerous some experts say there's been a paradigm shift in how they're treated. For years the philosophy was to remove the tumour entirely, something that is still done today, but that can cause big risks and potentially leave patients blind or with permanent brain damage. Increasingly, surgeons try to use minimally invasive methods to reduce benign tumours rather than destroy them. Today, we bring you the story of one man, New Yorker Demetri Kofinas, who was diagnosed with Craniopharyngioma in 2009. He was 28 at the time. And we begin this story the day he learned of his brain tumour. This is Leif Zapf-Gilje’s documentary Mind and Matter.

DEMETRI KOFINAS: I went in for an MRI and a tech there, after the MRI was over I was walking to leave, and he goes, yep, it's definitely Craniopharyngioma. And I was like, huh? I mean, just like that, he just said it. It almost sounded like me sort of discovering a problem in some sort of machine that I was using or something where I was really excited to find a bug that I could fix. He sort of just came across this image and as if he was just excited to see a very rare tumour in my head.

ALEXANDER KOFINAS: I am Alexander Kofinas, Demetri’s father. In reality, there were not too many options. The options they gave us were very unwanted, unpleasant, fearful. Two choices existed then. One was to open up the skull and kind of lift off the brain, lift up the brain a little bit with metal instruments, which invariably they can damage the brain, they can damage nerves, they can do different things to you, lead into complications that would be lifelong, such as loss of vision, loss of hearing, and, of course, traumatic injury to the brain that can affect mobility and so forth. The other choice would be to go through the nose. And, of course, in order to do that, to get to the tumour, you have to sacrifice the pituitary.

DEMETRI KOFINAS: Both of those procedures guaranteed that I would lose all of my hormone production from my pituitary, which meant loss of testosterone, loss of growth hormone, anti-diuretic hormone. I can't, I mean, I can't list them all right now, but it would have been very difficult to live that way. You know, you're discovering it now as an incidental finding. It's not causing you any symptoms. And it may never cause you any symptoms. So just because you discovered it doesn't mean that you should do something with it.

ALEXANDER KOFINAS: You know, I’m a surgeon myself and the mentality we have- as they say give a surgeon a knife and he's going to take out anything you have- and Demetri made a choice that I agreed fully with him, that we're going to sit and wait.

DEMETRI KOFINAS: It's difficult to look back at just how painful it was to live that way.

ALEXANDER KOFINAS: It's like, you're in your bedroom and you have a tiger in the corner and you never know when he’s going to really attack you.

DEMETRI KOFINAS: So that terrified me. I had become very depressed and it was more of a- how would I describe it? I fell apart. I was really unclear about what the point was of anything that I was doing because I didn't know what I wanted to do in my life if I didn't know how much time I had. Do I have six months? Do I have five years? Do I have 50 years? How much time do I have? And depending on how much time I have that's going to affect what I want to do with my time. I was immobilized.

[dramatic music]

DEMETRI KOFINAS: I spent a year, sort of, almost a year stumbling and this opportunity opened up.

SOUNDCLIP

REPORTER: Thanks very much for joining us, Mr. Kofinas. Now the pictures...

DEMETRI KOFINAS: I was in Greece on for a wedding at the time and this was when there were a lot of riots and Greece was in the news and I got a call from RT International saying, would you want to come on air to discuss the latest happenings in Greece and—

SOUNDCLIP

REPORTER: …from Greece to make sense of all of this is Demetri Kofinas. He is on the ground in Greece…

DEMETRI KOFINAS: The next couple of days I did 11interviews total live—

SOUNDCLIP

I think that the markets have not priced in a Greek default.

DEMETRI KOFINAS: And it was amazing. I was completely unqualified by any normal measure, but I had the passion and I had the drive and I had the confidence. After those two days I was given one offer to create a show, a finance show. That to me was like, wow. That's it. That's what I want to do. I couldn't have been happier.

[dramatic music]

DEMETRI KOFINAS: Not a single day passed, when I was in Washington, DC, when I was not acutely aware of my mortality. And I knew that working as hard as I was working; just everything that I was doing was not healthy. In fact, I remember having a conversation with a friend of mine who told me, you know you really shouldn't be doing this because it’s just unhealthy in general. And I said, you know what, you're right. You're entirely right, but I don't care.

MONA ZUGHBI: He was writing the show, booking the guests for the show. It was just insane. I’m Mona Zughbi. So when I met him he was just sort of in that mode of, like, I can do anything and everything and my show is so awesome. And he was just like the man on campus, if you will.

DEMETRI KOFINAS: I didn't become aware of any symptoms until I got back to New York. My grandfather died. When I was on my way up from Washington, DC to New York and I had forgotten about that. I had our plane ride to Santa Monica that when I was on the flight I forgot where I was going.

MONA ZUGHBI: He started exhibiting a lot of forgetfulness. And he completely was just-- To me, he felt like he was a shell of himself.

DEMETRI KOFINAS: Things seemed weird. Concepts were weird. I give an example of a giraffe and this was actually a real example of one of many different cases where a concept, like a giraffe, in my mind didn't make sense. It felt weird. There's something really weird about a giraffe. I knew that it was an animal with a long neck. But what was an animal?

[bizarre music]

ALEXANDER KOFINAS: It became really devastating. He could not hold a discussion. He could not make any sense of things. And we realized that he was lost. He would go-- He was looking for an apartment, for example, and he would have an appointment with a broker and he would forget to go. Or he would meet with a broker and see the apartment and then after a while he would call him back and say, hey, I mean, when am I going to see the apartment? I tried to convince him to go back for a follow up MRI, but he wouldn’t take it. It was a two-week, maybe three-week period that eventually we had to forcefully call a family meeting. And we convinced him that he's going to have to go for an MRI to see what is going on because I told him, you know, it's very likely with this symptoms you have because of the of the tumour expanding. So he agreed and we went for this MRI. The news, of course, was not good. The tumour had more than doubled, so that expansion of the tumour started that compressing the structures of the basic brain, of the base of the brain rather, all channels and areas that the memory process is going through and without them you can't- depends on the level of damage you may not be able to make memories at all or you make memories but you cannot recall them. And that is the case of anterograde amnesia. You stop remembering anything going forward. Whatever happens to you from that moment on you don’t remember.

[music]

DEMETRI KOFINAS: And after that my father handled everything. He’s both a physician and obviously I was not in a condition to make appointments or really understand what I was doing, so he reached out to some friends and they gave him some names.

ALEXANDER KOFINAS: And so we made an appointment. And it was literally the first time that I saw some light in the tunnel.

DR. JEFFREY GREENFIELD: My name Jeffrey Greenfield and I am the neurosurgeon that operated on Demetri. The typical approach puts many, many crucial structures at risk and damage to those structures occurs at a very, very high rate. Conversely, when you go through the brain, if you know the anatomy well and you map out your trajectory well, you can actually take a very, very safe trajectory through the brain and approach the lesion from the backside, sort of sneaking up behind it.

ALEXANDER KOFINAS: He told us, the surgeon Dr. Greenfield, that he doesn't expect any complications. It's basically a procedure that, yes, it is invasive, but it is minimally invasive and does not cause any damage because you open up a little hole in the skull and you put a probe through the brain. But the brain is like a thick, like a thick bush, for example. You can push a stick through a bush without breaking any branches or any leaves. It was an amazing moment. I immediately felt a tremendous relief and confidence that Demetri will fine. Demetri could not understand that yet.

DEMETRI KOFINAS: ‘Course, I didn't understand it. Even if I didn't have dementia, I would have been initially, sort of, shocked because I didn't know you could pass through the brain without hurting it.

ALEXANDER KOFINAS: I mean, what we saw was not just that, okay, this is another way of doing things, but there was a human touch in the communication. We connected with the other surgeons we saw. [voice catches] People don't realize how-- even physicians don't understand how important is the trust between the patient and the physician.

DEMETRI KOFINAS: What was most terrifying was that I might lose everyone. I might lose myself, also. And I had already been losing myself. I'd been losing my mind. So I had, sort of, I had a fear about being lost in sort of eternity, sort of, just falling into darkness.

ALEXANDER KOFINAS: I was waiting outside of the intensive care unit until they came and told us that Demetri was back.

DEMETRI KOFINAS: As I was becoming conscious the first memory I had was I was being positioned was this pain in my head. And immediately, I was like, oh, brain surgery. And the only reason that I was able to do that was because this pressure that was on my hypothalamus and on my cognitive areas of my brain had been alleviated. So I was able to think. And, you know, I immediately thought, oh, you know, pain in my head. I had surgery. And I looked at my dad.

ALEXANDER KOFINAS: I told him, you know, something and I don't remember exactly what was the statement.

DEMETRI KOFINAS: He said to me that it was great. He was great. Greenfield completely collapsed the cyst. And he actually saw the hypothalamus pulsating. And I sort of looked at him and I said, wow. He saw the hypothalamus pulsating, really. And my father was just silent. I mean, he was silent. His tears- his eyes began to well up. And he looked at my mother and he said did you hear what he just said?

ALEXANDER KOFINAS: And I said, oh, my god, Demetri, you’re back. And I started crying, because I realized that he was back. Indeed.

DEMETRI KOFINAS: For him to see me understand immediately of what the pulsation of the hypothalamus meant-- I immediately understood what that meant. I said, oh, it was pulsating. It means that, you know, there was blood. There's a resurgence of blood. That means, you know, it's working.

ALEXANDER KOFINAS: I mean, I don't think that they're enough words in the dictionary for me to express my gratitude and relief and excitement for him being back and being my Demetri , with his energy, and the intelligence, and his ability to think.

DEMETRI KOFINAS: I would just be sitting in my hospital bed and memories would come back. And as they dropped there were like, it was like rain. I describe it like rain. It was like pieces of my life were just dropping like rain droplets.

ALEXANDER KOFINAS: He was just pouring, and pouring, and telling me things and how they were happening and he says, you know, dad, it’s like I have this pipeline downloading stuff to me.

DEMETRI KOFINAS: I mean, that sort of intense period was for the first 48 hours, you know, 72 hours. That's where I really did that most intensely. It was scary getting memories back. Because it showed me that my memory wasn't perfect and that I had forgotten all this stuff.

[music]

DEMETRI KOFINAS: When I got home from my surgery it was an incredible experience. I got home, well, to my parents' house and I had been to my parents' house before my surgery and I got back to New York. And I, for example, would forget the garage code, wouldn't remember how to open the garage. And when I got home from the hospital I opened the garage. I mean, I have to tell you, the experience of having things like that happen it was surreal. It felt like the boy who could fly.

[music]

MONA ZUGHBI: I was actually super excited for him to come back into news. So I made the crazy assumption that he was coming back and he was like, oh no. It seemed to me he was more tapped into the things that he really genuinely loved, like the arts.

SOUNDCLIP

Where goes Cesario? After him I love more than I love these eyes, more than my life, more than…

MONA ZUGHBI: Now he has his own production company. And he's producing off-Broadway plays.

DEMETRI KOFINAS: We have a particular approach, which is, we take from actors, improvisers, comedians, and musical performers.

SOUNDCLIP

VOICE 1: Like that?

VOICE 2: Yep.

VOICE 3: Perfect.

VOICE 2: All right. Ready? We’re quiet backstage.

DEMETRI KOFINAS: And that makes the performance very different.

SOUNDCLIP

VOICE: And Act Five. Go.

DEMETRI KOFINAS: Right now, we're focusing on Shakespeare, because, well, primarily, you know have to pay.

ALEXANDER KOFINAS: Seeing him with all these-- I mean, he has this renewed urgency on his part to create and his experience has made it a lot more passionate for him.

DEMETRI KOFINAS: I had such an amazing life as a result of the fact that I had to confront my mortality. I know that death is not just a theoretical thing. You know, it's really actually something that happens to us and understanding that and living your life that way, it really frees you and it's enabled me to do things that I think I never would have done.

ALEXANDER KOFINAS: I'm extremely excited. I’m unbelievably excited by this thing. I can't-- I absorb it, I live it. I mean, I enjoy every moment. I enjoy every moment because I thought they would never back again. You know, I can’t tell if it is as great as when he was born. And I think it is greater because I do not know him before he was born, but then I knew him and I lost him. He came back.

[music]

AMT: We've been listening to Mind and Matter, produced by is Leif Zapf-Gilje. The Current’s documentary editor is Joan Webber. Well, to tell us more about such tumours and give us more perspective, I'm joined by Dr. Sheila Singh. She’s an associate professor of surgery, a pediatric neurosurgeon at McMaster Children's Hospital, also a scientist at the McMaster Stem Cell and Cancer Research Institute. Dr. Singh is in our Hamilton, Ontario studio. Hello.

DR. SHEILA SINGH: Good morning, Anna Maria.

AMT: Well, what were you thinking as you listened to Demetri’s story?

DR. SHEILA SINGH: Well, this is an amazing story and just the imagery alone is quite stunning, you know, his droplets of rain analogy for recovering all his memories. And it's really, it's an unusual presentation for Craniopharyngioma, but it is seen.

AMT: How so? Why is it unusual?

DR. SHEILA SINGH: So Craniopharyngioma is a tumour that arises from primitive, what we call, embryonal rest cells or, if you can imagine, primitive cells that were destined to form one structure, but got arrested in the wrong place, migrated and traveled to the wrong place. So the place that they originated from is called the stomodaeum or primitive mouth organ of the developing human and those cells migrate somehow strangely to the brain and arrest there and then form this tumour. And that's why in the name Craniopharyngioma, you have cranio, meaning brain or skull, and pharynx is, of course, the throat. So you have these cells that aren't supposed to be there, that will grow slowly, and they generate a tumour that is composed of both solid and cystic structures. So the solid structures are quite inaccessible. They're usually wrapped around and right in the middle of the brain and put pressure on very vital structures, as you heard, so the tumour will press on the optic nerves and on the pituitary gland and on the hypothalamus which sends signals to the pituitary to tell the pituitary which hormones to release. And so, as a result, most children, when they come in and present with this tumour, will be short and fat and have a loss of vision, blind. And that's the typical presentation is to come in with headaches and sometimes the onset of precocious puberty because hormones aren't being released properly.

AMT: And so normally you see patients a lot younger than when he first got diagnosed, it sounds like.

DR. SHEILA SINGH: That’s right. We do see Craniopharyngioma in adults but the typical age is usually eight to 14 is when they show up with these signs and symptoms. To come in with a purely emotional and behavioural presentation, such as Demetri’s, is a little more unusual and usually this is often picked up either with a visual disturbance; the children will completely lose the their visual fields on the side, bilaterally. And sometimes they'll come in also with the hormonal presentations, which you'll either notice as an eight year old going through precocious puberty when they shouldn't be, or, for example, maybe the 14-year-old is coming in with delayed puberty.

AMT: And how do you normally treat that?

DR. SHEILA SINGH: So originally, usually, they’ll be seen by an ophthalmologist or an endocrinologist. And in some settings the children will come in with a blockage of their fluid and with pressure on the brain. In that case, come straight to the neurosurgeon. In any case, whichever pathway through which they're diagnosed, they usually obtain an MRI of the brain at some point and then that will diagnose the tumour. And as you mentioned at the beginning of your documentary, there really has been a paradigm shift. Historically, we used to try to remove these tumours completely. And we would really almost ravage some of those structures I told you about. You know, we’d permanently damage the pituitary gland, in some cases, the optic nerves, or the chiasm where the two optic nerves meet. There are major blood vessels there and children could have strokes. And, of course, the frontal lobes themselves could be damaged causing permanent behavioural or cognitive disturbances. And so we gradually shifted away from that gross total resection approach of trying to remove the whole tumour all at once to just dealing with components of the tumour that are causing pressure on the brain and leaving the rest of the tumour alone. Because, as you also mentioned, this is a benign tumour and it's not going to damage or hurt the person by virtue of its biology, only by virtue of its location, its proximity to dangerous structures.

AMT: And its growth, I guess, eh. What happens to when you reduce it without removing it completely? Does it grow back? Does it continue to grow sometimes?

DR. SHEILA SINGH: Excellent question. So as I was listening to Demeitri's documentary I was thinking in my head, he'll likely need some more procedures in his life, but hopefully they'll be the similar minimally invasive procedures. The cyst that was drained could very likely re-accumulate, because, as you point out, the tumour that's generating the cysts, it's still there. And so if the cyst re-accumulates, there's various strategies we have to either drain it again, as the neurosurgeon Dr. Greenfield did, or in some cases what we've done is we actually place a tiny tube into the cyst cavity, draining to a reservoir that we place under the scalp and that way if we see on an MRI that the cyst has re-accumulated, we can just aspirate the fluid from the scalp. And that saves the patient a major surgery.

AMT: And essentially that's what it is then, it's a fluid in this tumour? It’s not like a hard mass?

DR. SHEILA SINGH: It's the tumour itself that is wrapped around the major structures, there's usually a solid component that's very firm. In some cases, it's almost like a rock; it's been growing there for so long, we presume. But the cystic structures are filled with a yellowish fluid. It's kind of a thickish, yellowish fluid that can be aspirated. So some of the minimally invasive procedures we now use is this we’ll take an endoscope and we can navigate our way through a safe corridor through the brain and drop into the cyst, open or make a window in the cyst, and then drain the contents of the cyst. And in some cases we’ll leave behind that tube or that reservoir, so that we can come back and drain again in an even less invasive way.

AMT: Now, we heard that his memories came back after the surgery. It was, you know, he could actually recognize that he started to remember things and recognize things. How common is that, to reverse the symptoms?

DR. SHEILA SINGH: It's so funny, because when I did speak to Leif, who produced and wrote the documentary, I was sharing with him similar experience that I also have patients who have recovered, who presented with major behavioural and memory cognitive changes, and the minute the cyst was drained they did improve and recover function as well. And, so, part of this is by virtue of Demetri's relative youth; the younger you are the easier it is to recover and regenerate, in terms of brain function. But secondly, imagine that the cyst is like a big balloon that's growing slowly and slowly and pressing on the brain. The brain itself, it's almost like the electrical wires in the brain are not able to function properly, but they're not permanently damaged. So, if you were to puncture the balloon and release the contents of the balloon, then suddenly that part of the brain it’s not under pressure anymore and it can resume its normal function. So that's what happened, I think, with Demetri.

AMT: Now, you talk about this. Give me an idea; it's still a pretty rare thing, is it?

DR. SHEILA SINGH: Yes, absolutely, out of all of brain tumours that present in children Craniopharyngioma only represents maximally eight percent. And it's even more rare in adults, probably between one and two percent of all adult brain tumours. So, yes, it's quite rare.

AMT: Would the adults have had it since childhood and just not known?

DR. SHEILA SINGH: That's a good question. There's two pathological subtypes of Craniopharyngioma . One is more common in adults and one is more common in children, so they may have slightly different origins, but overall we believe this tumour has been there since those primitive cells arrested during development. So, perhaps this tumour has been growing since the child or the adult was even born.

AMT: How common is it that such a thing is misdiagnosed?

DR. SHEILA SINGH: You know, because of the nature of the slow growth of this tumour it can be quite indolent in the way that it presents and I often find with all my patients who present with cognitive or behavioural or almost psychiatric changes, sometimes it takes longer for them to get an MRI because people aren't recognizing that there's something catastrophic happening, for example, that the person's not so sick that they're an emergency with a decrease level of consciousness and vomiting. That would get you an MRI very quickly. But when you have very slow indolent symptoms that build up, that are somewhat subtle, and sometimes related to personality change, you don't come to an MRI as quickly.

AMT: That’s fascinating. Dr. Sheila Singh. Thank you for sharing your perspective on all of this with us.

DR. SHEILA SINGH: Thank you, Anna Maria.

AMT: That is Sheila Singh. She is a surgeon and researcher at McMaster University, associate professor of surgery and pediatric neurosurgery at McMaster Children's Hospital, also a scientist at the Stem Cell and Cancer Research Institute at McMaster and she joined us from Hamilton. That is our program for today. I’m Anna Maria Tremonti. Thank you for listening to The Current.

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January 25, 2016 Episode Transcript

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