Beyond Brain Tumours
Beyond Brain Tumours is a podcast by, for, and about the brain tumour community. Listen in as we talk to brain tumour survivors, patients, and caregivers as they share their stories and perspectives on brain tumour treatments, research, and survivorship. Learn more about Brain Tumour Foundation of Canada’s resources, programs, and services for people affected by a brain tumour. Visit www.BrainTumour.ca.
Beyond Brain Tumours
Practicing hope: A conversation on courage, connection, and resilience | Part 1
In this episode, we explore hope as more than just optimism- as a mindset that can be built, practiced, and sometimes rediscovered when everything feels like it’s falling apart.
Join us for a heartfelt conversation with Ann, who shares strategies and insights from her journey as a relentless advocate for her daughter. From building partnerships to moving through advocacy, growth, and resilience, this conversation honours not just the successes but the doubts too- and invites listeners to find strength in both.
For additional information, you may visit:
Going for Hope: Strategies That Make it Possible to Persevere: Hovey, Ann
Learn more about Brain Tumour Foundation of Canada at BrainTumour.ca. Follow us on Facebook, Instagram, X, YouTube and Linkedin.
Welcome to Beyond Brain Tumors a podcast of inspiration, hope and support for the brain tumor community. I'm your host, ben Seewald, programs and Services Specialist at Brain Tumor Foundation of Canada. In this episode, I'm excited to chat with Anne Hovey, an author, speaker, facilitator, coach and, if all of that isn't enough, also a mother. Her educational background in engineering and statistics affirmed her appreciation for data and process, while her professional experiences have reinforced the power of soft skills when striving for optimal results. But it's Anne's journey as a relentless advocate for her daughter that is perhaps most inspiring, and I can safely say everyone will benefit from hearing about the lessons she learned and has captured so eloquently in her book, as Anne successfully partnered with her medical team to achieve those optimal results. Thank you so much, anne, for joining us here today.
Speaker 2:It's an honor to be here. Thank you for having me. Thank you so much, anne, for joining us here today. It's an honor to be here, thank you for having me.
Speaker 1:So, Anne, I read your incredible book and it really is terrific. So maybe it's just. It's a little bit important just to establish what your experience is and to outline your daughter's journey specifically Well, how long do we have?
Speaker 2:daughter's journey specifically Well, how long do we have? Kaylin's healthcare journey began two decades ago when she was diagnosed with a juvenile parasitic astrocytoma. It's a mouthful in her brainstem. She wasn't yet three and, as frightening and overwhelming as it all was, it still took me several weeks and three exploratory-like brain surgeries to process just how grave her situation was. It became a lot clearer after being told that she maybe had a year to live. There have been way too many interventions to attempt to share them here, but the challenges include a fourth life-saving brain surgery in New York, include a fourth life-saving brain surgery in New York, four months of resulting rehabilitation at Bloorview, two eye surgeries, five surgeries on her left foot and several tumor progressions. Two of these progressions actually resulted in a total of over six years of weekly chemotherapy. Navigating this journey has easily been our greatest challenge. Thankfully, I can also share that her recovery has been exceptional, so much better than anyone expected. She made it much beyond the 10 to 12 months and she will be 24 this year.
Speaker 1:Oh, wow, that's terrific yeah it's fantastic. You say in your book that life is about growth and adversity inspires it and hope fuels it. You talk in your book about hope being the quality most responsible for the exceptional results during your journey.
Speaker 2:Can you expand on that? Yes, I can. I view hope as the single most important fuel for any productive or constructive action that I took. And I feel that way because if you are not hopeful, like if you really don't believe that taking an action or doing a therapy or making a choice on interventions is going to open the door to the best outcome possible for your child or for yourself, you're not going to take the action, you're not going to go through with it, because why put yourself into something difficult or push yourself when there's no chance of it making a difference? So hope has definitely fueled anything. Anytime I did something that was constructive or productive on our journey, it was fueled by my hopefulness that it would make a difference.
Speaker 1:Yeah, and so then, yeah, I'd love to know kind of the specific watershed moment where you really realized that that hope was the only path forward, the only path forward.
Speaker 2:Well, I think I think I realized that hope was a critical ally before this. But it was such a powerful moment for my daughter because she was trying to relearn how to walk and crawl while we were living at Bloorview for four months Now, holland Bloorview and she had gone to the bathroom our bathroom is four steps down from the main level and I said, oh, guess what? Because? And we're home for the weekend, so when you were stable, you were able to go home and experience normal, whatever normal was. And the idea was that the child would would receive therapy, sort of ongoing therapy, by doing fun, normal things. And so I thought, ok, well, we're going to practice, we're going to have her practice her crawling, because we've been working on crawling. And I said, ok, you're going to crawl up these four stairs. And she said, no, I know I'm not. And she was three at the time and she was determined and I said, no, I believe in you. You've been doing such an amazing job. I know you can do this. You know all the work you're doing is getting you places. And Kay was like pick me up. And I said, no, you've got this, I believe in you. And when she went up on the first step her left arm. She has left side hemiplegia and her left arm gave way. And so it proved to her that she was not. You know, I'm not going to go up the stairs, pick me up.
Speaker 2:And that's when the yelling started and her younger sister was sleeping. So I was like, oh boy, this is going to be interesting. And I just said, oh, my goodness, what have I done? I've now created a situation where I've told her what's possible. I told her I believed in her. I told her that all of her hard work is amounting to something great. And if I pick her up, am I going to be undermining everything I've just said? And that was a real worry for me because of my experience with some of my coaching. For me, because of my my experience with some of my coaching, you know, and my leadership if you say something, you have to your actions have to support that you believe what you've said. So I went to, I said well, I'll hold your, I'll hold your waistband.
Speaker 2:And that's when the yelling got a little louder. She said pick me up. And I did not. I came up to the. I came up and sat on the floor and I said I believe in you. I know you can do this. And I literally thought was this the dumbest thing I've ever done?
Speaker 2:And a few minutes later, maybe, just maybe it was just 30 seconds later, but a period of time later I had this beautiful three-year-old, smiling girl in front of me saying I'm proud of me, and I said well, you should be, because you've accomplished something and you've proven to yourself that when you try, you can do things. And I believe me, I, I. It was such a sigh of relief that it hadn't all gone wrong, but the one thing I was clear on was that I would never have put her in that position if I wasn't hopeful she could do it, that I would never have pushed her through that experience if I wasn't hopeful that she could do it, because why would I do that to a child and why would I make her that upset when she'd already been to hell and back? Why wouldn't I just pick her up and cuddle her and tell her I loved her Right?
Speaker 1:I'll just add that your belief in your daughter and your belief and your hope that your daughter could overcome what she has been through really led to her achieving that next big step in her recovery and her development well, it's interesting because I really do think there was like you're turning, it's like you're turning a corner and, um, that was such a power.
Speaker 2:I call it a corner. And that was such a power, I call it a watershed moment, because it was such a powerful moment that we reflected on several times saying, okay, you've already proven to yourself that when you try, you can accomplish. And she'd be upset about something and I'd say, well, have you practiced? Have you tried? Like, don't be, don't be upset about it unless you've actually tried. You know, if it's important to you, you'll keep working at it. And that watershed moment really set that up.
Speaker 1:And when we got back to Blurview on the Monday, she was in a different headspace but also as a myself and as someone who has worked with teams kind of all of my life. That ability to see that somebody else believes in you and believes that you can do something that you might not believe yourself that you can do is such a powerful tool. Also through your story I kind of heard just the incredible amount that you believe that your daughter could do it and she saw that other people could see that she could do it and she did it and I think that's just an incredible thing.
Speaker 2:Yeah, it was, it was. I was so very thankful it worked out that way.
Speaker 1:Yeah, yeah, okay. So, and can you share with me just a few?
Speaker 2:Well, that's actually why I wrote the book was because in the book, I cover the strategies that I used at some very difficult moments along our journey, and those strategies when I used them, there were several times that I was in a position, an emotional position where I was kind of spiraling downward with my fear or concern for my child, and when I embraced a strategy, I experienced this turning away from that towards. I mean, it may not have been a 180 degree turn, but I was moving towards the okay, what can I do now and what can I do to help her, or what can I do to make this, you know, find a way to make this decision, or, um. And so my strategies that I document in the book. I can honestly say I relied on them heavily to move through really challenging moments for me emotionally. The other other things I've relied on, though, is I have relied on my relationships with my circle of people that are important to me. That's both my family and dear friends, and it's also the connections that we've made along the way of people who have lived similar experiences to me.
Speaker 2:And then the last thing that really, really contributes to remaining hopeful and protecting that hope is putting some time and energy into my own physical health and well-being. I did not do a good job of this for several years and it is. It became a priority because it had to. So take making sure that when you, when you spend time with people you love and you're connected to you, don't feel alone and a trouble share is a trouble. Halved trouble share is a trouble have, and when you are fatigued it's more, it's easier to feel less hopeful. So that's why the physical health and well-being is important too. So, yes, I did use my strategies, but, man, those other two things are very important.
Speaker 1:Well, and it's so easy to just focus on the what's right in front of you and kind of put everything else aside, when even you know, intellectually, we know that we have to take care of our own situation as well, but it's, it's so easy to just pour yourself and all of yourself into, uh, the person that needs your help in the moment, right yeah, well, because, because you could.
Speaker 2:You know your reason for not taking the dog out for a walk was a reason, it wasn't an excuse. I mean, you really did have a day where you're exhausted. That would have been the perfect time to you know, get outside and release the stress, right.
Speaker 1:That's right, yeah. Now you also mentioned that you did find connection with your community. Find connection with your community. I know that a lot of people who kind of go through these situations and scenarios really struggle to find kind of others in the same boat, and so could you just elaborate a little bit as to where you found your connection with others who have a similar lived experience?
Speaker 2:Well, I'm going to. I'm just going to first of all, empathize with why it's hard to do, because I, you know, in the first few years of our journey, I was so caught up in our journey and how challenging it was that I wasn't looking for other connections with people who had similar experiences. I was too. I was just literally trying to get through it, you know, step by step by step, and my first experience connecting with others that had similar experiences was through family camp at Camp Trium, which is now known as Camp Fire Circle, and I cannot believe the depth of the connections that were nurtured by five days of being with other families and you're sharing a table with them, at a meal they have. The campfire circle, I imagine has the same programs as Camp Troyan. We've moved beyond that, though agewise we've aged out, but they actually had planned events that parents got the opportunity to talk in a more relaxed environment.
Speaker 2:I hadn't spent in a hospital arena. You're, you smile at someone, you say hi, and then you move on. There's no connection there, and so it they. They do a fantastic job of honoring the whole family's journey and, as a result, you got to come away thinking, oh my gosh, I I didn't have to explain to someone what I was feeling or what I was dealing with. They, they, they knew. And once that happened, once I had that experience, I now. I then became more open to other things like brainwave, right? You'd think, oh okay, that was such a great positive experience with other families then. Then I'm going to try this now, but it was it. It did take me a bit to to decide that I was going to fill out the registration papers and see what happened. That connection was critical. I came away having laughed harder in five days than I'd had in several months before.
Speaker 1:Oh my gosh, and what a magical thing that is right To be able to share those experiences with people who get it, it's true. In your book you also kind of mentioned the importance of asking for help. So can I ask, who did you ask for help that really made a difference to you?
Speaker 2:You know, I think the question that would be easier to answer because it would be less people on it, it would be to who did I ask for help? That didn't make a difference, because that would be. I'd have a hard time finding one experience where I truly asked for help and didn't fundamentally benefit from it. When you are in a desperate place, even the smallest bit of help like there's, there's big help you get, and there's also, you know, someone offering to hold my, my toddler or not, or my baby at the. Also, you know someone offering to hold my, my toddler or not, or my baby at the time. You know help is.
Speaker 2:It reminds us that we're not alone, and I, I, my strategy as I write about the book is ask for help and ask everybody, anybody, anybody for help. So there was not one member of our, our healthcare team that I didn't ask for help from, and it wouldn't necessarily just be once that I asked for it and I got amazing help. I got amazing help. There were a couple times where I didn't get the help I wanted and I just would find another source or I would ask in a different way.
Speaker 1:And I just would find another source or I would ask in a different way. Well, and I think that that really speaks to your specific mindset on data and process and kind of continuing to approach the problem until you get the optimal result that you're looking for, right.
Speaker 2:Yeah, a bit stubborn, a bit stubborn. And one of the stories I actually told at the symposium last week was our diagnosing doctor told me, several years into our journey, that he thought I was delusional. And I was like, well, okay, well, it takes a little bit of crazy to you know, get through this journey and he goes no, no, I really, I think you're, you're delusional. You, I thought you were delusional because you weren't paying attention to, you know, the gravity of your daughter's situation and he said you kept pushing us to work with her as if the best results were going to be possible. You know, through through my asking, you know, and said but I've learned through her journey that when you push for the best results possible, you'll achieve things we didn't think were right. What a gift, what a gift that was to give me.
Speaker 1:Yeah, wow, that's incredible, yeah, yeah.
Speaker 2:I was asking for help. So, even if, even if I even asked when I could tell that, my, when I asked someone, well, I'd like to consider this goal for Kay I'd like to consider you, could you could tell whether or not they thought you were a bit crazy, right?
Speaker 1:And I was like, yeah, I don't really care if you think I'm crazy, I'm, I'm just going to and if I, if we get it great, if we, we don't, then at least I try it right, yeah, yeah, and it's the not trying that you would completely regret later, right?
Speaker 2:well, but but I understand when people don't try, because we have never been more overwhelmed, yeah, than we are on this type of journey. We walk into an arena, we where we do not have the answers. We are not the one that has the skill set to help our child, something we never prepared for and you also don't want to upset the people that you are relying on to help your child. So you don't want to ask too many times, you don't want to push too hard. It's a very precarious relationship. Well, at least it seems that way to us. I don't think it's that way from the health care providers, but for us it just because we're vulnerable.
Speaker 1:And I mean your specific situation. I mean yes, all across the board for anyone going through this situation, but your specific situation, talk about vulnerable. You have a three-year-old and a newborn and having to navigate all of that at the same time is unthinkable.
Speaker 2:It was the challenge of my lifetime.
Speaker 1:I mean, and also allowed you to figure out a way to capture all of this stuff in this really incredible book that you've put out into the world.
Speaker 2:I will tell you it was a labor of love, because I wouldn't ever call myself a writer, but I've had the opportunity to speak to people, to speak to groups of people, and I've heard that, well, you should write a book. And I'm like, oh my gosh really, and I've always told my kids that if you have the opportunity to make a difference somewhere, then you need to step up. And so I thought, oh my goodness, I'm going to, if I can, if I can help any other parent or caregiver in any way. It's how I make lemonade, right? So I make lemonade from some very sour lemons. We had to navigate.
Speaker 1:And so many lemons too right, we had a few it wasn't just the sourness of the lemons, it was just so many of the lemons just constantly well, actually, back to the back to the hopefulness part.
Speaker 2:I just want to touch on that, based on on your, what you, what you mentioned there is that, uh, one of the things that I cover in Chapter 11 is I talk about protecting, you know, nurturing your resilience, and it is so critical because it's like you have one big lemon and then you stay hopeful. Then you have another big lemon and you go, okay, stay, and you get to the fifth or sixth lemon and if you aren't actively trying to, you know, make another pot of coffee, you know, and so you can drink the cup of resilience type of thing. If you, if you aren't taking the time to do that, then it's very hard to continuously feel that you know that your hope is alive and actively driving action.
Speaker 1:Yeah, and to that point in your book and I can't remember if it's chapter 11 specifically but you explore the concept that the new normal is kind of an ultra marathon and I love that framing. I think that's a terrific way to kind of approach what the new normal looks like. I'm a brain tumor survivor myself and I've had to navigate a very similar thing where I just wanted to get back to normal. But really it's about navigating the new norm and this ultra marathon that is the new norm, and so for some the recovery is really quite straightforward. I've seen this from so many of the community that just want to get back to the way that things used to be. But you found a path back to pre-diagnosis life can be anything but seamless. Can you share a little bit about how you learned to navigate the inevitable adversities and what your coping strategies were?
Speaker 2:That's a big question, and I will do my.
Speaker 1:I will. We can have a whole podcast just on that.
Speaker 2:Actually it feels that way. Um, because I would say that the toughest chapter to write of my book was chapter nine, and that is returning to the new normal. Um, because, quite candidly, as we left Bloorview and we drove west home, I figured that returning to where things were before was a real possibility. And then you have these. You know, that dream gets punctured with ongoing appointments and required therapies, appointments and required therapies, and in our case more interventions were required. So it wasn't normal.
Speaker 2:And when I wrote chapter nine, what's very cool is that I involved the input from other brain tumor mamas that we met on our journey and that are still very dear friends of mine. I just had the opportunity to see one of them last week and that was great. But I asked what made it tough for you to return to the new normal? And chapter nine is a is sort of an homage to, to our, our answers, and you're desperately trying to return to something pre, you know, pre-diagnosis. It's when, and when it's unattainable, that's tough, that's a tough pill to swallow because you have to grieve the loss of that and move on to okay, this is what it is, and to get to that, this is what it is. And with that kind of a hopeful tone, it's not a casual objective. What was the next part of that question?
Speaker 1:what else? What was the next part of that question? Oh, just kind of any others. Any strategies specifically that helped you navigate those adversities and cope with the grief and the loss?
Speaker 2:there, the. I'm going to share what I actually wrote about in in um in the book, because they, they, they were three strategies that absolutely were critical to me, especially as you know we'll use the, the. The idea of the lemon as lemons arrived has continued to arrive um. One was the five by five rule, and I can't take credit for it. I read about it somewhere and it just sort of made sense to me for whatever reason. But the five by five rule is don't worry for more than five minutes right now about something that isn't going to matter in five years.
Speaker 1:Oh, wow.
Speaker 2:And for me, just uttering that to me, when something pops up and I'm anxious or afraid or angry about something, when I say five by five, it immediately puts things into perspective and it's like oh yeah, this isn't going to matter in five years. Okay, you still need to work through the emotion, but don't take days, don't, don't, you know, think about this forever. Give yourself the five minutes. The other thing that I've noticed is it's not like I stopped thinking about that issue once I get past that five minutes, but the sting of the issue is gone, like if I really know that's not going to be something I have to worry about in five years. Like if I really know that's not going to be something I have to worry about in five years. The sting of that issue is okay, I'm just, it helps me move through. The perspective is invaluable. And the other thing is is, if it's something like, oh, this is going to matter in five years, then I know that it is something that maybe I need to be a little more proactive in deciding. Well, what are my steps then? What are my steps and who do I need to get involved?
Speaker 2:Another I think that the strategy that I have singularly used the most is a breathing strategy, and it is where I breathe in for four, I hold for four and then I release for however long it takes it's seven, eight, it doesn't matter but you release as I release.
Speaker 2:What is critical for me is to say thank you for something, and I will admit that there are times when finding that thing that I'm thankful for in that moment is extremely difficult and it takes time to come up with it. I've now, I've now, as I've, as I've got many more years experience, I now my go-to to start with is thank you know, thank you for my strength, and then I say that a few times and then I that other things start coming in and I'm, I'm able. Yeah, thank you for my family, thank you for my this, thank you for my health, thank you for my. You know, but when I do this deep breathing, never have I gone through 10 cycles and not been changed emotionally and and in a better place where I'm, you know, remembering, okay, there's, there's some really good things going on and that helps power my hopefulness for the difficult thing I'm dealing with.
Speaker 1:And then, yeah, that's so powerful and I mean especially, I mean I think oxygen is one of the basic building blocks of life, and so to to work kind of those fundamental components into your mindfulness exercise, I think is just a terrific idea.
Speaker 2:It has seriously gotten me out of some very, very dark, unhappy places. And the other thing I write about is something I used when I was first in my in a very difficult professional role and I was feeling very insecure for for very good reasons and I realized that I was spending too much time and energy thinking about that, thinking about the fact that there were people who didn't really want me there to be doing the you know, doing what I was supposed to be doing, and I thought you're putting so much time thinking about that that you're not putting your energy towards what you can do to try to, you know, fix this. And so I had this moment. I said black box it in. Black box your insecurities, put them up on a shelf. You cannot look at those insecurities until you're finished this project, because you need to finish this project, give your best to it and honor the people who put you in this position and who believe in you.
Speaker 2:The story is really quite interesting, but I know we have limited time and I did. I black boxed it and the minute I kind of figuratively put that box on a shelf and said don't look at that, you can't waste your time. I sort of turned towards my desk and my computer and and I started to think of what can I do right now? And it wasn't until I opened up that that get rid of all those, you know, your concerns about what people are thinking. That's it's not helping you. And so I have black boxed more than one emotion, more than one insecurity in this two decade journey.
Speaker 1:Wow, yeah, again. Just super helpful advice, I think, is. I mean, everybody going through these kind of things needs these strategies and these kind of guidance, touch points, and so to compartmentalize but also kind of bring in fundamental building blocks of life, and how you can navigate these things effectively is so helpful.
Speaker 2:Well, and I want to share that, it wasn't like I had the moment and was like, okay, this is one of my strategies. I didn't recognize them for critical strategies until time had passed and I was back in the same position and I needed something. I think, oh my gosh, what do I do? And then I realized, oh my gosh, I'm calling on this and this is helping me move through it, and that's that's why I recognize it as a strategy like after the fact, and sometimes you know more than just a couple months after the fact.
Speaker 1:Yeah, and I think that I mean hopefully this podcast will help people to get to those places a little bit sooner and to stand on the shoulders of those who have come before, and that's what I'm hopeful for this podcast that we can do. Oh, me too, yeah.
Speaker 2:Me too.
Speaker 1:Well, thank you, anne, for this terrific chat. You have tremendous insight, you've offered tangible suggestions and I know that you've sparked hope in the lives of every member of this community. Join us for part two of our conversation Beyond Brain Tumors, with Anne Hovey, as we discuss the finer points of successfully partnering with your medical team to achieve optimal results, and how Anne was relentless in building a winning team. Learn from someone who had to go through it All to come in the next episode of the Beyond Brain Tumors podcast.