A Decision Tree

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news, information and discussion for our community. 

Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. Today we're gonna be talking about the U C S F Pediatric Stroke Research Center, as well as visit with guest Jennifer Dwyer, whose beautiful son Braden gained his wings just days after his AVM rupture.

And we're gonna end with a short discussion on the first part of chapter two of our current focus book, suffer Strong by Katherine [00:01:00] and Jay. But before we get started, I wanted to let everyone know that the American Stroke Association, which is a branch of the very well-known American Heart Association, has moved up their timeline for their Stroke Hero awards and are now accepting nominations through December 6th of this year.

Now earlier, my son won the pediatric award for 2022. So do you know another stroke hero? The American Stroke Association's Stroke Hero Awards annually recognize everyday people who have shown resilience and used their experience as a stroke survivor, caregiver advocate. Or group to help others. So go on their website, www.stroke.org/hero awards and consider nominating yourself or someone you know by December 6th.

Now, before we get started, we have had a few questions about the AVM Alliance in general. In addition to our podcast, you can find our page on [00:02:00] Facebook, which is AVM Alliance, a pediatric stroke page, as well as interact as part of our community on our Facebook group, AVM Alliance, a Brain AVM Aneurysm Pediatric Group.

Our online group is dedicated to filling the needs of the pediatric stroke community while supporting the charitable organizations who make a difference. Our goal is to create a community of support and assistance with the mission to educate the public about pediatric stroke, as well as show children who have this condition that they are not alone, and provide valuable information to help others on this journey.

So in a bit of news today, the U C S F. Center of Excellence in hemorrhagic stroke research was awarded the American Heart Association's Henrietta B and Frederick H Burger Foundation Award for their innovative and multidisciplinary approach to cerebral vascular research. Now, currently, U C S F is leading three [00:03:00] projects under the guidance of Dr.

Heather Fullerton and through these, the Center hopes to improve the care of children with brain AVMs around the globe. Now, Half of all strokes that occur in children are hemorrhagic, and that means they're caused by bleeding into the brain. Most childhood stroke research has looked at ischemic stroke, which is the blockage of blood flow to the brain as a true center of excellence in hemorrhagic stroke research.

U C S F and its collaborators have worked together. Put together the first major study of pediatric hemorrhagic stroke with an emphasis on the most common cause in childhood, which happens to be brain arterial venous malformations, otherwise known as brain AVMs. Now the brain avm is a malformed vessel that is usually present at birth, but can change over time in ways that make them more likely to bleed and injure the surrounding brain.

And after such [00:04:00] injury, children can struggle for a lifetime. So doctors can cure AVMs and prevent stroke through surgery or treatment with radiation in some cases. However, these treatments can injure the brain and sometimes children can develop another AV M even after the first one is cured. The doctors need better information to help guide their treatment decisions, and that's basically what the goal of this study is.

They're going to gather information that will help each individual child born with a brain a v m have the best possible outcome. And they've put it in three separate projects. Project one is going to analyze the images of the brain and blood tests in order to help predict the dangerous changes that can occur to an avm.

Project two is gonna use the imaging to map out the brain networks around the avm. And the goal there is to help preserve those networks and hence the brain function of the surrounding tissue during an AVM [00:05:00] treatment. And. Three is going to build up the International Pediatric Stroke Study, and as part of that study, there have already been over 6,000 children who have had ischemic stroke that have participated.

This project is going to add an additional registry to the one that's already there. For children who have brain AVMs and who have had hemorrhagic stroke, and this registry is gonna help doctors and researchers around the world understand the demographics and social determinants of hemorrhagic stroke treatment and outcome.

It's gonna look at race education and where a child lives, as an example. Now as a final aim, this project results are going to be used to develop a decision tree. And this decision tree is going to try to help doctors guide the proper care and treatment of brain AVMs and children. So today I am very [00:06:00] pleased to introduce you to Jennifer Dwyer, who is just an amazing mama doing all she can to help raise awareness and funding for early detection.

After her sweet son Braden gained his wings from his AVM rupture 

Jennifer Dwyer: January 22nd. It was a ped day. It was also my husband's birthday. I said we're gonna be eating a bit late cuz everyone was having a nap cuz they're out all night long. So I said, we'll make dinner for dad like a bit late, like around eight or something.

So I was in the living room having tea and folding laundry and he was in my bedroom and he was playing on his ps4 and all of a sudden he was laughing and you know, like a normal child. And then all of a. He jumped out of the bed and he came running into the living room and he was like holding his head.

He's like, mom, I have a really bad, bad headache. And I'm like, he never, this child does never complain. He could probably take so much, but he would never, ever complain about anything. So I literally looked at him and I knew right away, okay. And he goes, can I have [00:07:00] Tylenol or Advil? Which is very rare.

Mm-hmm. . So I turned around cupboard and I was going to get Tylenol and my son Shane turned around and said, mom, look at him. As I turned around, I've never seen this in my life. The water was coming out of his eyes like just. , it was like a fountain. Mm-hmm. . And, oh my God, Braden, are you okay? And I, I literally was holding him.

And he says, mommy, he says You know, I, I, it hurts, like I have this bad headache. And he says first thing he said to me was, am I gonna be okay? And I said, you're gonna be fine. You're gonna be fine. But the minute I turned him around, my husband jumped out of bed and said, what's going on? I said, I don't know what's wrong with him.

And he asked his dad, daddy, am I gonna be okay? By the time he, Kevin reassured him? Yes. His eyes went into like the middle of his, his nose, and. He went into a coma. So we knew right away by this point my daughter had called 9 1 1. The first responders arrived. So this all happened in a period between.

Him arriving at the Children's hospital within four [00:08:00] hours, maybe a little bit less. Okay. They did a scan right away and that's when Dr. Veal came out and said to us, look, your son is very sick. We need to operate in him on tonight. He has an avm. We're like, what in the world is an A V M? Right? So he explained it to us and he said it was in the cerebellum.

Pressing against the brainstem. So basically he says, look, that part was very successful. Now we have to wait. You know, we went into the I C U and saw him all intubated and everything, and he looked like Braden, but just sleeping right? And as the days went on the weekend, it was the weekend. So it it went all right.

And then by the fourth day, Brayden went into a cardiac arrest. What happened is they couldn't get his heartbeat back to regular. Exactly. So basically that doctor that was on duty in ICU that night said to us like, look, there's nothing left we can do for your son. I'm like, what? But in the meantime, our neuro came running cuz he was downstairs and he's like, you gotta do something, you gotta do this, you gotta do that.

He's like, [00:09:00] he was like, you wanted to say Braden so bad, like Right. And I was so in shock. I was like, this is not happening, you know? It, you know, I told my boy he is gonna be okay. Like, what? You got a something right? And so basically we called his sister and his two, two brothers and Nate came down to Montreal.

I had a friend drive them down and it was the worst day of our life, like just to say goodbye. They said, you know, that that's a v m is, so there's not enough studies basically on that, you know. 

Raylene Lewis: Jennifer, what advice can you give to, to parents, you know, who are going through this or to friends? Of parents who are, who are dealing with this, this situation, because a lot of people, you know, they don't know what to say.

They don't know what to, you know, what do you do for somebody when such a, a tragic and sudden thing happens? What's, what's your 

Jennifer Dwyer: advice? You know what my advice would be? Basically just to listen to them, let them talk, [00:10:00] you know, the worst thing you could tell a grieving mother or father, or anyone. You have other children?

I, I hate when I hear that, it's because honest to God, I know I have other children. I have a sign in my office says, my children are my world. They're the reason I live and I breathe. You know, I love every one of them. I never had any favoritism for any of them. I look at my kids, I see the sadness.

They're not the same. You know, like we're still a very closed bunch, but. It's just so tragic, you know, and it, it's so hard for myself and I look at my other children and I can't imagine what they're going through. My advice to other parents you know, who have children as well. My goal now is to help other families children, we have to make a difference.

We gotta find a cure. We gotta do something about this. I mean, I'm pushing, I'm working with my neurosurgeon in the sense. , you know, he told us that he's gonna be with us till his last breath. Like he's been, become a friend of ours. He came to Braden's uh, celebration of life. He's doing studies to do either blood tests to see what we [00:11:00] can do.

I'm pushing for scans. I want like, I mean, I know it's costly, but 

Raylene Lewis: know what, it's a way to find out. It's the one way to find. 

Jennifer Dwyer: Exactly, because they told me after the loss of our son, they said, I can guarantee you the rest of your kids. I said, no, no, you don't understand. One is way too many. I said, my son's not the only one that lost his life due to this, you know, terrible ticking time bomb.

I said, I want all my other children tested. A S A P. 

Raylene Lewis: I did the same thing. Yeah, everybody, my husband, myself, yeah, my Kyle's brother and sister. We were all tested. All tested, 

Jennifer Dwyer: eh. But yeah, so like, basically what I'm doing now is making awareness. I'm doing events going around. I did the golf tournament, which our first year we raised $40,000.

Raylene Lewis: Oh my gosh, you're like my hero. That's amazing. 

Jennifer Dwyer: And we're trying to touch base with like hockey players. And Braden's favorite hockey player was Brendan Gallagher, which is number 11, however ironic, you know? Yes. So we're trying to [00:12:00] like, reach him and see if he would come to, you know, be like the, the big guy that day.

And in honor of Braden and I, I am not gonna give up this fight. Like this is my, my mission in life. 

Raylene Lewis: I completely, I completely understand. I mean, obviously, you know, spreading awareness and trying to help others and in particular trying to get the general population to understand. Yeah. You know, number one, it's only rare until it happens to you , right?

Jennifer Dwyer: I use that all the time. 

Raylene Lewis: Yeah. Yep. And the second thing is, and I, Braden was the same way. Kyler never had a headache. He never had any symptoms. He always passed every single health test with flying colors. Like, if you don't get scanned, you don't know 

Jennifer Dwyer: Jen. I can't, you know, like, but this is another thing, like you have a child with an AVM who's here, but it's, it's, it's so nerve wracking.

Yeah. Because you, [00:13:00] you're, you're doing everything in the power that you can. Right, and you best for your child, you know? And then yet you got people like myself and other people too that lost their child, and we're all, so we're everyone's suffering. You know? 

Raylene Lewis: Definitely we're suffering all the time. It's just, it's just in different ways.

It was just eating me up inside that I can't cure my kid. I can't fix him. Yeah. So if I can't fix him, then it's like, well, what can I do? What can I control? Just like you. , I think the similar with you. And it's like, okay, well then what we can do is we can be the ones to raise money and raise awareness.

Braden has has siblings, right? Just like Kyler. Kyler has a brother and a sister. What do you think the community should be doing to help support the, the siblings who are affected by, by brain avm, blood brain vessel disease? 

Jennifer Dwyer: That's a really good question. You know, The community itself [00:14:00] has been super amazing with us.

From the time that we lost Braden in front of our home. I don't know if you've ever seen the pictures I had posted, but it's actually on the website too. There's like three trees, three Christmas trees that are all lit up and they have like little fairy lights and the community came and they hung wooden hearts with messages written down for.

And like the kids too, they'd go out there. And even my daughter was saying recently, like sometimes, you know, she'll still go out there and read the things that have been up there. We're coming up to. Almost two years in January. So everything's still there. We've lost a few in the winds and stuff, but people still check in.

We have a lot of good support from the community, you know, people never forgot. So like everyone's there, they're, you know, it's a matter of just reaching out and. 

Raylene Lewis: Yeah. So just, just not, not disappearing. Providing good community support is like the biggest thing that you can Yep. Recommend and letting the kids know that they're, that they're cared about and stuff too.

Oh yeah. Now if [00:15:00] somebody wants wants to know like, how to find you or find your story or see what you're doing, where's the best place for them to go? 

Jennifer Dwyer: So, the best place I would go to the website, which is www.team braden.org. . And from there they'll see everything. We have some merch, like sweaters and and t-shirts and bracelets and we have winter toks and all kinds of stuff as well.

And they can make a donation on that page, which goes directly to the foundation. With what we're trying to do is trying to, you know, turn the ugly into a, a positive, you know, 

Raylene Lewis: well, you're doing an amazing job and keep keep telling his story and we'll keep sharing it. 

Jennifer Dwyer: Absolutely, and I'll definitely keep Kyla in our thoughts and prayers every day.

And you know, and same for you if you take care of yourself and your family. 

Raylene Lewis: Moving on to chapter two of our focus book Suffer Strong. Now, this chapter was written by Jay Wolf and it explains the concept of redefining the [00:16:00] past. He starts with pointing out the fact that every story. Starts with a memory and that while some memories are remembered fondly, others make us long for some things that were but never will be again.

There have been many days where I couldn't click on the memories this time last year on Facebook for that very reason. . In fact, I'm gonna be honest, I changed my settings for a while so that they wouldn't even pop up as a choice. When I looked at those memories, I would think that was before my son's diagnosis.

That was before the brain bleed, before everything changed, and I'm sure many people can relate to the phrase, if I only knew then what I know. As Jay writes, it's easy to feel bitter when we're not living the life we thought we would be. And sometimes it seems impossible to try to find anything good in a story of trauma and loss.

And I'll agree with that a hundred percent. [00:17:00] James refers to a psychiatrist whose name is Dr. Kurt Thompson. And Dr. Thompson teaches that our memories are made from what we pay attention to. So what we focus on matters. I mean, this is super true. When Kyler was in therapy and he was getting lost and couldn't remember anything, they basically said that the problem was that the focus part of his brain.

To help him remember, wasn't encoding anything and it had to be retaught. Well, Dr. Kurt says that basically, since what we focus on matters so much, our brain uses the memories of what's happened in our past to anticipate our future. Well, with this in mind, the author J poses the question, can we remember our past stories in a way that narrates beautiful stories in our.

When I read this, I was pretty skeptical, but the book says that the antidote when [00:18:00] this feels impossible is always gratitude. He quotes an author from 1937 who says, gratitude changes the pangs of memory and our perspective on things as it allows us to begin to pull back the layers of loss and reveal the goodness underneath.

The hard story needs to be. And take as long as we need to do so. But as Jay says, redefining the past is critical to allowing peace on the inside that will eventually lead to healing and one day, maybe even joy as well. Today's quote is by Alicia Scott. Don't let the storms of your past cloud your vision for a brighter.

And I'm gonna add one of my personal favorites when it rains, look for rainbows and when it's dark, look for stars. I always like to end our time together with a motivational song recommendation. I don't play the song [00:19:00] because of copyright laws. But there have been many times on this journey where a song really spoke out to me and helped me with my day.

Today I'm recommending you check out The Dog Days are Over the demo version by Florence and the Machine from the 2009 album Lungs. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational. Don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast.

Remember, you're never walking this journey alone. Take care of y'all.