Why parents with young kids fall through the cracks during cancer

[0:17]  Welcome back to another episode here on the Heart Hustle Podcast. We have Miss Haley in the building. Almost called you Mr. But you're not. You're a Miss Haley. Miss Haley, how are you doing today?

[0:24]  Good. I'm glad to be here. Thanks for having me.

[0:26]  Same, same. Where are you virtually? So we everyone that's watching or listening knows exactly where you're located.

[0:30]  I am in Oakland, California.

[0:32]  Oakland, California. Born and raised there?

[0:34]  No, I'm originally from the suburbs outside of DC from Rockville, Maryland. and I've been out here though for nineteen years. So long time.

[0:44]  Are you liking the West Coast though?

[0:44]  I am liking the West Coast. It took me a minute to get used to the whole thing, but it

[0:50]  Yeah.

[0:51]  was a culture shock. But now now I'm fully rooted. So it's it's good. Yeah.

[0:56]  Y did you still got family out in the D C area? Or did they also

[0:59]  Yeah, my dad yeah, my dad lives out in DC still and that's kinda it though. We're all now we're all over, so yeah, yeah, yeah.

[1:07]  Okay. That's what happens. You get older, everybody starts to separate, and then you you know, hopefully still spend that time during holidays. You guys get together during holidays and stuff like that or?

[1:17]  Yeah, we do. I mean, we I, you know, I take my kids out east, I would say once a year. That was like one of the sort of requirements for me to be able to stay out here. Is I needed some summer. The one thing that Oakland does not have is like a really nice, the summer is not as hot and like magical as like an East Coast. So no fireflies here, you know? So like

[1:39]  in Orlando, Florida, so I know what it looks like to have that heat on the east side coast.

[1:44]  Yeah. Yeah. Yeah. Yeah. Like people eat ice cream here and they're like, teeth are chattering. They're like, It's August, it's time for ice cream and they're like, you know. Yeah.

[1:54]  heard that about Boston that people said in Boston, even during the winter times, the ice cream shop is still a thing. And I'm like, who the hell is eating

[2:01]  Mm-mm.

[2:02]  ice cream during the cold times? Cause I'm sure not. You what I mean? I'm eating

[2:05]  Th exactly. I'm with you.

[2:06]  soup. I want some s hot soup. Kaylee,

[2:09]  Mm.

[2:09]  what is the organization you represent and what is title?

[2:11]  Sure. I'm the executive director of Bright Spot Network and we support families that are navigating a parent's cancer diagnosis when the kids are under ten years old.

[2:22]  Wow, and how did you get into the line of work?

[2:25]  it was kind of a circuitous path, but I was diagnosed with stage three C colon cancer when I was 37 and I had just returned back to work from my own maternity leave. And so I had a six-month-old baby at the time and a three-year-old.

[2:41]  Mm-hmm.

[2:42]  And while I was very, very lucky to have great medical care, I found myself kind of like falling through the cracks socially. I needed support. as a new parent, as a new cancer patient. And my kids were so little, and all the resources I was finding were for families and parents who had kids that were older. They were resources for teenagers and middle schoolers, a group of kids that really needs a lot of support, but it wasn't the support that I needed and that my family needed at the time. So eventually I was connected to another cancer patient, another mom who had been diagnosed while pregnant and had kids the same age as mine. And much of what we connected about, not the only thing, but a lot of what we connected about was having little kids and trying to navigate this cancer journey at the same time. And Bright Spot Network was born from, you know, that friendship and and trying to build the trying to build what we wish that we had had when we were initially diagnosed.

[3:41]  So this is put together by you and a group of friends?

[3:46]  Originally it was me and now a member of my board, Amy Barnes. we together just yeah, just kind of went out to our community and were like, you know, this is what we're imagining and kind of got our community support, both you know, as advisors and you know, strategic thinkers, but also in like the real like nuts and bolts, like, okay, like Amy's mom started to help run the The Bright Reads program, we started giving out books for free to families because we we knew that books are a great way to talk to, especially little kids, about a parent's cancer.

[4:24]  Yeah.

[4:24]  you know, we started right before COVID and we had fundraised and we knew that families who in general, right, COVID was a huge financial stress for families. And if you already were not working because of a cancer diagnosis and all of a sudden a partner or co parent. also wasn't working now because of COVID. That hour reduction was just, you know, so much for these families while they were navigating a cancer diagnosis. So we started a financial assistance program from that. So all of these different pieces, it was all very, very community based. and now we've grown and we're serving about 3,000 families a year and we're national. And yeah.

[5:07]  Let's go.

[5:07]  Yeah.

[5:07]  What was your background like before you get started in this? 'Cause it seems like you you had it going on. I mean, this is a three thousand people and and that's a long that's a lot of people.

[5:15]  Yeah, I mean, I come from a nonprofit, the nonprofit space. So that part was not new for me. originally, kind of in my before times. I so my before before times, I was an academic. I have a PhD in history. and I thought I really wanted to be an academic, but I loved being in the classroom, but the research wasn't really getting me out of bed in the morning, and so I made a pivot. to something that I had been really passionate about for a long time, which is criminal justice. And I started initially I was volunteering at San Quentin that now has a fully accredited two-year college on the grounds of San Quentin. at the time it wasn't kind of as established as it is now.

[6:00]  Mm.

[6:00]  And so I was volunteering there, teaching there, and I was working with first gen. Students for students who were this was the first the first per person in their family to attend college. And then I quickly kind of just like made a pivot in in my life where I I was working inside San Francisco jails, kind of running college and career programming for an organization called Five Keys. And I joined the board for Mount Tamil Pius College, which is this college inside San Quentin. And that was really my work. and it's such important, beautiful, great work. And I was doing that when when I was diagnosed with cancer. And my cancer diagnosis really obviously it was terrifying, it was a terrifying time, especially with two little kids. and I had to, you know, I was still doing the work while I was navigating my diagnosis and treatment and all of that. But when I was on the other end of my treatment, I realized that I just kind of needed to slow down and working inside you know, working inside a jail or prison is just really intense work and I I needed a little I needed something a little different. And then also my heart was being pulled in this other way and I was you know, meeting people every single day whose stories were you know, intersected with my own and they needed support and and they were scared and had all of these kind of competing, you know, competing things in their lives. And so Bright Spot really was was pulling me in this other direction. So I was coming from a nonprofit space, but

[10:27]  Born from that. Yeah.

[10:45]  I just kind of always

[14:49]  Okay.

[15:47]  say that like I'm really attracted to just miseries is the is the thread is the career th thread there. So and bureaucracy.

[21:22]  man. I I I appreciate you for you know g you've seems to be in this space of passion and purpose for a very long time. And definitely now more purposeful work for sure because it means even so much more to you because you were at one point in your life part of this, right? And now you wanna

[24:39]  Yeah.

[24:43]  make sure that others could have that same you know, we always get into places because we want to be for someone else what we wish we had. And that's

[24:43]  Yeah.

[24:43]  really what you created. You created something for others that you wish you had. And even though you didn't have it, now you're able to provide it. And that just so much more rewarding on that, you know, space because you can come from it on a different like, hey, I understand where you're at level. But I want to kind of go back because I I feel like every chapter of our lives, that journey right, of history to academics, to the jail, they all teach you something. There's something to learn from that journey.

[24:45]  Totally. A hundred percent.

[24:45]  What do you think you learn from those moments that you bring into today's work that you do?

[24:46]  Well, I mean, you know, on a really, you know, one thing that I think a lot about with my like academic career is just how like just how critical it is to like one, always be learning. even though I was doing like academic learning, you know, I take that first of all it's like a love. Like I love part of what I love about my job is I'm learning something new every day. Like I'm doing I wear a lot of hats and I feel like it's a super privilege to be able to learn something new every day. And so even though I'm not necessarily like learning like a an academic, you know, I'm not like learning about

[24:48]  Yeah, yeah, yeah.

[24:48]  the past necessarily. I'm learning like new skills all the time. And that's something I feel really grateful for. And then I think one of the, you know, I mean I learned Absolutely, just like a tremendous amount working in you know, inside inside jails and prisons was just

[24:49]  Yeah.

[24:49]  a tremendous learning opportunity for me. and I think there, I mean, I think one of the big one of the big things I learned is just working inside a bureaucracy, you really have to just kind of put one foot in front of the other. And you know, if there's a will, there's a way. You know, like it's like sometimes just Like you just gonna gotta find the path that's gonna get you to the get you to point B or whatever you're trying to do. And you might have to take more than one, more than one try. I mean, that's I would say just one of the many lessons that came from that came from that experience, but or from that work, but yeah, an important

[24:55]  Yeah.

[24:55]  one.

[24:55]  I love it. I love that. I love the the story from the past. Let's get into the today and what you're doing now and for the future is that you have some different programs. I'm as I I'm looking at them. There's virtual support groups, the Bright Box, the Bright Grants,

[24:57]  Mm-hmm.

[24:57]  the Bright Reads, so many different things. Like if you can just kinda talk about to the programs and resource that you guys provide for those that are listening and watching

[24:59]  Yeah.

[24:59]  and understand what you guys do.

[24:59]  Yeah. So, you know, at the heart of it, Bright Spot's supporting families that are navigating a parent's cancer and who have kids that are zero to ten years old. And so we know that this zero to ten year old age group really needs connection with their parents and they need to, you know, know what's happening. That's gonna help them further connect to their parents. So Big part of the work is providing tools to help parents talk to their kids about the parents' cancer. So, you know, when I was diagnosed, a lot of people said, your three-year-old's not gonna remember, don't even worry about it. You don't need to talk to her. But, you know, I knew right away, like my cancer was really serious. And within between getting diagnosed and my first surgery was was seven days. So that means like in those seven days, I was You know, getting scanned, getting, you know, I mean, like preparing for the surgery. Yeah,

[24:59]  You were like there, but not there, probably.

[24:59]  you know, I was in 10 different places. And so that meant that, you know, we're really lucky to have family support. So that meant grandparents were picking her up from preschool. It meant that, you know, people were around. My dad flew in, you know, like all of these things were changes. And beyond that, you know, when you have a a crisis like that happening at home, there's a change in the mood, right? My daughter. noticed that change in the mood despite our best intentions, you know. On top of that, she had never been, I had never the only time I had ever been apart from her for more than like a night or two was when I gave birth to her sister. So, you know, now I was like, you know, I might be in the hospital for three to five days. You know, so these are like really big, big shifts for her. So it was important for us to use you know, appropriate language to tell her what was happening, let her kind of prep her on what was gonna be happening. So Bright Spot provides tools that help parents to have some of those conversations, ranging from a free book program where we'll send families books in the mail to guides, tips. We also have coloring books that kind of talk about They were just an opportunity for parents to kind of sit side by side with their kid and color and then have those conversations. These coloring pages talk about what cancer is, and they also talk about kind of changes to a parent's body that they might need to like prep their kid on. You know, maybe they're in a wheelchair, maybe they lose their hair, maybe they have a port or an ostomy bag. These are all things that talking to your kid is going to allow them to navigate this difficult moment with more ease and less anxiety. So That's like one, that's one thing that we do.

[24:59]  Yeah, yeah.

[24:59]  We also have opportunities for connection for parents to connect with other parents. So we offer virtual support groups for parents, for parents who have a stage four diagnosis, for parents with inactive treatment, for parents who are in survivorship, parents of color. We also offer a group for partners who need, you know, caregivers who need so much support during this time, as well as for parents who are bereaved, so who've lost a partner or co-parent. we also offer opportunities for kids to connect with other kids. we know that that connection is really important for kids. So we offer groups for zero to five year olds that can make kind of like a circle time that you would attend with a parent, as well as groups for older kids. Again, just opportunities for like learning new coping skills, connecting with other kids. All of these things are really great. And then we also offer opportunities for families to connect. So, like a family fun night, things like that. We also have. webinars and other educational opportunities, as well

[24:59]  I love it.

[24:59]  as a financial assistance grant.

[24:59]  I love it. I mean, community is everything, right? Like sometimes

[24:59]  Yeah.

[24:59]  we don't realize that, and I always say this because representation comes in not the color of our skins, but the stories that we tell. And when

[24:59]  Mm-hmm.

[24:59]  we can put those people together in the same rooms and they can kind of share their stories, they realize that they're not alone. allows them

[24:59]  Powerful.

[24:59]  to yeah, a hundred percent. I mean, you just speaking and telling your story. I was actually on a call earlier, I think it's pink. Pink good girls or something like I can't what

[24:59]  Mm-hmm.

[24:59]  it was, but they do around breast cancer. And I have this friend that I didn't even know. She this she had cancer breast cancer twice. The first time she didn't tell nobody she dealt with it for two years and then told nobody. The second time it happened while she was pregnant and she had to deal with that. And having to, you know, do I get chemo? You know, save my child's life. And

[24:59]  Terrifying, yeah.

[24:59]  now I I tell her, I said, hey man, you have to share that story because the story

[24:59]  Mm-hmm.

[24:59]  is so powerful, and you don't realize that if you tell that story, how many more women will go get? checked and how many more women would

[24:59]  Mm-hmm.

[24:59]  take this more seriously because a lot of the times we just need to we just need to hear the stories, right? We just need to

[24:59]  Totally.

[24:59]  and then know that there's places for us to go more than anything. so kudos to you.

[24:59]  Hundred percent.

[24:59]  Kudos for you to being strong enough to tell your story, but also to bring the community around that as well. I think that's that's huge.

[24:59]  Well, I appreciate that. I mean, I always say that one thing that was really one thing that really was powerful for me was you know, being diagnosed with like a very serious diagnosis at 37 with two kids, you know, two little little kids is terrifying, but not being able to find the resources that you need, which is part of those stories, right? made that terrifying experience an alienating one as well. And that's a really hard, that's a really hard place to start receiving chemotherapy, right? Or to recover from surgery is to feel so isolated and alone. And so it really wasn't until I met Amy, who became, you know, we became co-founders of Bright Spot that I think for both of us we found the community that we needed, which is why we knew we knew it was so critical to build to build this out. And even just, you know, even just having the website. I hear from people that have never attended a program. They never did anything. Maybe they downloaded something, but they're like, I'm just so glad to know that this is there is is in some ways enough, right? Cause that just like is

[24:59]  Yeah.

[24:59]  enough to know that you're not all alone in this, that you're not the only one who has, you know, this this terrifying thing happening in their lives.

[24:59]  You mentioned people finding it, you know, via the website, however they may find it. What does that communication look like? Like how are you guys getting the word out? how are we staying engaged with individuals as you mentioned? Have we thought about that and that perspective, making sure people don't fall through the crack? I could imagine you've already got that downpack.

[24:59]  Yeah, I don't know if we have a down pat, but I would say that we're building, you know, I mean, it's definitely so we work with a lot of hospitals and social workers and child life specialists and nurse navigators. That's one of our main ways that people can find us.

[24:59]  Yeah.

[24:59]  So they get diagnosed, they tell their social worker, you know, I have a kid under 10, and their social worker hopefully is able to refer them directly to us. so that's one major way that people find us. I think the other way is through. Just like social media and the internet and web searches. So that's another way. And then I would say the other way is that just this, you know, we all know that once you have something kind of scary and random happen to you, like a stage three colon cancer diagnosis at 37, anybody who's cousins, best friends, moms, aunts, whatever. starts to come out of the woodwork. and so it word of mouth is also really strong in the community.

[24:59]  Love it. You you mentioned all these hats you wear. And anyone that's in a nonprofit knows exactly what you're talking about. You don't

[24:59]  Mm mm.

[24:59]  just lead an organization, you're gonna play the fundraiser at one point,

[24:59]  Yeah.

[24:59]  you gotta booch on the ground, you have all these things. What what does it look like for you now with technology? Do you feel like in the last six years actually, technology has completely changed? Do you see that kind of being helpful for you guys as well as you bat matter of fact, how big is the like how many members do you guys have that work for you guys internally?

[24:59]  We have three staff and then we have a whole crew of contractors and facilitators. so we have like a contract development team and you know, folks like that, as well as facilitators that that you know run and facilitate our like support groups and kids groups and things like that. And volunteers, a ton of volunteers. my God. Yes.

[24:59]  Okay, so yeah, yeah. Volunteers, listen, we thank you. Volunteers show up all the time and listen, we thank you. We thank you. so what

[24:59]  Mm.

[24:59]  does the ta technology look like for that perspective, right? You got so many different moving pieces. Are we using things like AI, what other technologies for those that may be kind of in similar places and want to know how they navigate?

[25:00]  Yeah, I mean, I would say yes to all of the above. I mean, having like new systems, like I'm just thinking of like even I mean, this sounds so boring. But like having like a good HR system or payroll system that like can work with like there's a lot of new tech and apps that are specialized in a small shop or at least can work with folks who have a small shop and things like that just make life so much easier. you know, to have to be able to rely on rely on something like that, just make things so

[25:00]  Yeah.

[25:00]  much better. and then I would say in terms of AI, we do use AI. It helps us so much in terms of like helping to navigate our I don't know, like I don't know, like even just like reading spreadsheets or like stuff like that, like helping

[25:00]  Yeah, yeah.

[25:00]  to do analysis and things like that are just it's a huge, yeah, huge, huge for us. Yeah, exactly. All of that stuff. Yeah.

[25:00]  repetitive tasks, all the things that we hate doing. Yeah. I always say we go to school to do the things we love, not to do all the extra admin work. You know, if

[25:00]  Yeah.

[25:00]  we could get things that could really help us on that back end, because I can imagine Haley, you're a boots on the ground. You love the conversation. You love to be

[25:00]  Yeah. Mm-hmm.

[25:00]  in front of people and kind of share what it is that you guys do. There's nothing like that. AI doesn't replace that, right? The empathy, the things

[25:00]  Totally.

[25:00]  that we can do at that level. but if it can help us on the back end, yeah, let's do it. You know what I'm saying?

[25:00]  my God. Yeah, totally. And when I think that like something like, you know, I don't know, like I don't know, like writing contracts. The fact that like there's just like boilerplit language that like AI can help with like kind of, you know, I still need somebody to read that over. I still need, you know, it's not that's not the that's not the end of the story or the the last part of it, but certainly not my expertise, you know.

[25:00]  Well w what does it look like for you guys? I could imagine that you created this plan for the next two, three years, maybe. What does that

[25:00]  Mm-hmm.

[25:00]  plan look like? I always like to hold people accountable. So next time we talk to them I'm gonna say, Hayley, you told

[25:00]  gosh.

[25:00]  me last time, where does it look like? So what are those things that you have in plan?

[25:00]  Yeah. Yeah. Well, so we have a big bold, ambitious goal of we're gonna reach 10,000 more families by the end of 2028. we put just recently put our three year strategic plan kind of in process, rolling. We know that our programs are baked, we have wait lists, we have people coming to them, we're you know, constantly receiving referrals. And so now our work is really like outreach is continuing to figure out how to let people know that Bright Spot exists, that we're here for you. these programs exist. And so that's about reaching out to communities that one, we don't maybe have those social, we don't have those champions, we don't have those social workers right now. And then it's also about like being really thoughtful and strategic about what communities we are reaching out to. So, you know, thinking about cities that we're not currently you know, don't currently have a a a champion in as well as to rural communities that might have less access to supports like the ones that we offer.

[25:00]  Heck yeah, I love this. And how how can people get involved? Like, can do you guys have social? You've talked about social, what is the website so that people don't know how to get

[25:00]  Yeah.

[25:00]  involved?

[25:00]  Well, so follow us on Instagram at Brightspot Network. that's our major social channel. and then also, you know, just check us out on our website, brightspotnetwork.org. we're also on LinkedIn and Facebook, Bright Spot Network. And those are the those are the best places to find us. And Instagram definitely has our, you know, most up to date content and you know, program announcements and things like that.

[25:00]  Perfect, Hayley. And for those that may be feeling like they're alone in this situation, what do you share with them?

[25:00]  Say all any of us can do is put one step in front of the other, just put one foot foot in front of the other, right? Is that like on the day that feels just I don't know, like you can't, you know, is just kind of to tell yourself that you can. I remember that was sometimes the only thing that got me out of bed in the morning, you know, when I was feeling really sick, was just like, all I have to do is like kind of get to the couch. You know, if that's all that happens today is like I get to the couch, give my kids a hug, then that's all that happens, you know. And And you know, the way you do that is just by putting one one foot in front of the other.

[25:00]  Haley, thank you so much for being a rock star for never giving up on yourself, your family, the communities that you serve.

[25:00]  Thank you.

[25:00]  I think it's it's it's it's hard, right? To wake up every day in a time of of defeat where it feels like defeat.

[25:00]  Yeah. Yeah, totally.

[25:00]  continue to show up as you said and tell yourself like, hey, one day at a time, really talking

[25:00]  Yeah.

[25:00]  to yourself, surrounding yourself with good people. And and and you have some great things coming, I can only imagine, because you continue to show up and

[25:00]  Mm. Appreciate you.

[25:00]  put one foot in front of the other. Haley, we thank you so much for this conversation. We thank you for giving us the insight and may Bright Spot Network continue to just prosper and what you guys continue to do.

[25:00]  Thank you.

[25:00]  For those that are watching, make sure that you guys do like, subscribe, and comment. Check out Haley. Website is brightspotnetwork.org. You can see a lot of the programs and services, events, connection for kids. I'm kind of reading everything. Blogs. If you guys want hear stories, make sure

[25:01]  Yeah. Yeah.

[25:01]  to guys check out their social media. I'm Ephrain. This has been Haley, and we'll catch you guys the next one. Latest.