NC Deep Dive

Stepping Up: A Bald Hope in the Fight Against Childhood Cancer

March 12, 2024 Amanda Lunn Season 3 Episode 2
NC Deep Dive
Stepping Up: A Bald Hope in the Fight Against Childhood Cancer
Show Notes Transcript Chapter Markers

Every community has its heroes, and today, I'm honored to sit with one of Wake County's very own, Justin Crawford. An entrepreneur who's taken his expertise from the finance world to foster healthier living environments through Green Home Solutions, Justin's story is one of determination, family values, and unmistakable community spirit. Our conversation traverses his transition from investment banking to prioritizing indoor air quality.  We celebrate his profound sense of local engagement and involvement in everything from the Fuquay Varina Downtown Association to festive occasions that bind the community, while considering the larger fabric of support that enriches family life and community charm.

Tune in as we dive into Justin's latest endeavors to fund childhood cancer research and bring the community together, yet again. He's stepping up to shave his head for the St. Baldrick's Foundation at an event at Fainting Goat in Fuquay Varina on Sunday, March 24th from 1-6 PM and is ready to rock the Guy Fieri look in the meantime for the St. Patrick's Day parade in Raleigh if his goal is met.  We shed light on the immense value of the foundations funding much needed research for new medications and maybe even a cure as well as our local organizations that provide comfort and joy to children enduring major medical treatments, illuminating the powerful impact of individual contributions, whether they're monetary, in-kind, or simply the act of showing up.

Wrapping up our heartfelt dialogue, it's not just about getting to know the man behind Green Home Solutions; it's about recognizing the resilience and strength that emerges when we rally together for the common good. Through this episode, you'll not only gain insight into the invaluable work done by local organizations for children with serious illnesses but also leave with a reminder of the remarkable changes we can effect, simply by being there for one another. From my own experience through my daughter's journey to those touched by these organizations, one fundamental truth shines through: every ounce of support counts. Might you be willing to help?

To contribute directly to Justin's St. Baldrick's fundraiser, you may visit:
https://www.stbaldricks.org/participants/mypage/1137290/2024

Justin Crawford
Green Home Solutions
(919) 473-6053
ghsraleigh@greenhomesolutions.com

Meg's Smile Foundation
Zach's Toy Chest

Support the show

As always, if you are interested in being on or sponsoring the podcast or if you have any particular issues, thoughts, or questions you'd like explored on the podcast, please email NCDeepDive@gmail.com. Your contributions would be greatly appreciated.

Now, let's dive in!

Amanda Benbow Lunn:

Hello friends, welcome back to the NC Deep Dive. I'm your host, Amanda Benbow-Lunn, and this episode we're going to touch on a couple things near and dear to my heart, like fabulous organizations and events that help those in our community, and finding those that prioritize time and resources in their lives to create and support these fabulous organizations and events. In some ways to me, being aware of these people, organizations and events is one of my mental health hacks, as Mr Rogers once said, when I was a boy and I would see scary things in the news, my mother would say to me look for the helpers. You will always find people who are helping. And through my 41 years I have learned as a helper how absolutely essential it is to not only find the helpers but to help the helpers.

Amanda Benbow Lunn:

No matter how awful life may be at any given moment, we always have the ability to do something. Maybe we can't do all the things, but quite often we can absolutely do the next right thing, and it doesn't matter if it's big or small. That right next thing could simply be our gift of a smile, for sometimes it's the greatest acts that lead to the biggest ripples in our communities and beyond. So, without further ado, my friends, let's dive in. Welcome Justin Crawford. How are you doing today?

Justin Crawford:

I'm doing good. How are you doing?

Amanda Benbow Lunn:

I am doing excellent. Why don't you give us a little bit of an introduction of yourself?

Justin Crawford:

Sure, Happy to do that. First of all, thanks for having me on. I'm very excited to do this. I own a local business in Fuqua Verena cover all of Wake County and surrounding areas focused on indoor air quality. I try to be as involved in the community as possible. I do a lot of work with local small businesses and the Fuquay Varina Downtown Association, among other things.

Amanda Benbow Lunn:

All right, are you from this area?

Justin Crawford:

Originally I'm from Canton, Ohio, but I moved down to Jacksonville, North Carolina, at a very young age. My dad was in the Marine Corps for quite a long time, so I grew up in Jacksonville, North Carolina. I moved to the area in 1999 to go to NC State. I graduated from NC State. I moved away for a couple of years. My fiancee at the time now wife she was getting her degree at UAB in Birmingham, Alabama. So we lived there for two years and we moved back the day that she graduated. We actually went to her graduation in a U-Haul and left from there to move back to here, and we've lived in Fuqua since 2005.

Amanda Benbow Lunn:

Awesome, and I know you have Green Home Solutions. That's your business. What background do you have career-wise? Have you always been in this field?

Justin Crawford:

No, that's a funny thing when people ask me about that. I never went to college to be a mold man. I spent a long time in the futures world in investment banking. I've worked at Credit Swiss for 10 years and kind of worked my way up through the futures operations area, and there was a time where we basically split from Credit Swiss my whole group globally about 500 people became employees of a fintech company and during that time I kind of struggled with what I wanted to do career-wise.

Justin Crawford:

I wasn't exactly happy in that role. I tried to find other things internally but ultimately decided that I was going to take a career step and start a business on my own. So for about two years I spent researching what I wanted to do. I had a friend that had owned multiple businesses and we talked a lot about potentially teaming up on something we liked the franchise idea, the franchise model. You kind of get a business in a box, for lack of a better term and through that research we spent about six months analyzing green home solutions, learning their process, learning their products, going on sales calls, going on some of the actual jobs and just learning it and getting comfortable with it and ultimately we decided that that's what we wanted to do Awesome.

Amanda Benbow Lunn:

Now tell me a little bit about your family. You mentioned a wife.

Justin Crawford:

So I've been happily married since 2005. And we have two kids. My daughter Peyton is 13 and my son Colton is 11. Oh nice, they're around my kids age.

Justin Crawford:

Yep, they're very active. My wife has a really cool job. She's a forensic chemist with the state crime lab. And my daughter, Peyton, she is very active at her school. She's in the school government and also does Irish dancing and some other things outside of school. And my son he just made his school's baseball team and he does some ninja warrior stuff and stuff like that. So we try to be as active as possible with the kids and keeping them involved as well.

Amanda Benbow Lunn:

Oh, that's awesome. Does your daughter have an event coming up with St Patrick's Day?

Justin Crawford:

Actually, yes, she's going to be dancing in the downtown parade in Raleigh this coming weekend, so about a week and a Saturday morning this coming up, and I plan to be in that as well. That was one of the things that I had been offering or trying to raise money for for St Baldrick's. I'm going to do my. Guy Fieri, look at the parade in downtown Raleigh. So I'm pretty excited for that. Yeah, her school is going to be part of the parade and she does a lot of competitions as well. They call them Fesh, so she just had one in Charlotte last weekend and she's got one in Greensboro coming up in maybe two months or so.

Amanda Benbow Lunn:

Oh wow. All right, let's move into some of your community involvement. I feel like I see you in lots of different places, so let's speak towards that.

Justin Crawford:

Well, I try to be as engaged as possible, and it's more so. I've learned about myself that I really enjoy doing that. I really enjoy giving back. A couple of years ago I had the opportunity, through the Fuquay Varina Downtown Association, to help plan the barbecue blues and brews. It had been a couple of years since that had been put on due to COVID, and it was an extremely enjoyable event, purely from helping get it over the line and get it ready to go.

Justin Crawford:

We needed another team at that time. So I have a friend, owen Cork, with a wee bit quirky barbecue and I reached out to him and was like hey, we need a team, do you think we can make something work here? And he's like, oh yeah, like he's all about cooking and stuff like that. And he got one of his friends to get involved and so we put a team in there and, lo and behold, we got third place and we won People's Choice Award. So we were like Holy smokes, it was pretty awesome event. So that's been a staple for us. We did that this past year as well and this time we actually won People's Choice again and we got second place judges. So we're shooting for that first place next year.

Amanda Benbow Lunn:

And for those that might not be familiar, can you speak towards what Barbecue, blues and Brews is?

Justin Crawford:

Yeah, so it's a great community event in Fuquay Varina, a lot of live bands. They have a whole section that is for local vendors. So you can go, you know, peruse all kinds of stuff. There's jewelry and cocktail mixers and soaps and you name it like it's. You know it's going to a vendor fair. It's like going to a market, essentially, and then a whole section of it is, you know, the barbecue team. So those teams will spend basically 16 hours or so prepping and getting everything ready to go and there's 800 tickets that are sold for it to actually taste each of the barbecues. So you know, people can come through, they get a sample of it and they'll decide who they like the best.

Justin Crawford:

But it's a great community event. I think last year there was something like 5000 people that came to it. So it's a really good opportunity for the Downtown Association to raise money and just to get a bunch of people into Fuquay to help all the local businesses. It's right in downtown, so you know there's a huge intention there for you know, people that come they'll experience the barbecue, blues and bruise event, but they can also, you know, walk down Main Street and walk down some of the downtown businesses and shop. Okay.

Amanda Benbow Lunn:

Tell me a little bit more about the Fuquay Varina Downtown Association.

Justin Crawford:

Yeah, I have been involved in that for numerous years, but over the course of the last two and a half years I was very intentional about trying to get more involved, so reached out and said hey look, if there's anything that you need help with volunteers, things like that I'd be happy to get involved and started to be able to participate more in some of the events that they had and that's ultimately where the opportunity came to be on the planning board, essentially with a barbecue, blues and bruise.

Justin Crawford:

After that they asked me to apply for a board seat and went through an interview process and everything. They selected me on the board. So I've been on the board for a little over a year now and we meet once a month, actually technically twice a month because I was part of the arts committee for that as well. But the goal there is to, you know, build up the small businesses and build up community engagement in our downtown. There's also a beautification aspect to it. So we have an arts committee, we have a business committee, an economic development committee that really focused on what are the things that we can do to help the downtown and Fuqua in general, and why might that be important?

Justin Crawford:

Well, I think it's important to number one, give back to the community. Obviously, the Fuquay Varina is a great town. There's a lot of great businesses that are here. There's a lot of great people that are here and it's growing. So, trying to keep the Fuquay Varina feel while experiencing all this growth, that's part of what we're focused on. But we also look at things like safety you know crosswalks and stuff like that. So it's really all about how can we get all these people that are coming, you know, more connected into the community, help our small businesses in town and, you know, kind of give that Fuquay Varina feel that everybody loves.

Amanda Benbow Lunn:

I thank you for lifting that up, because I think that charm is what brings so many people here and what so many love. And while so many people don't necessarily love all of the people coming, some of the side effects like traffic everybody is looking for that connection, that feel. So I love that you're so involved and so you have an event coming up. It's one near and dear to my heart. It is the St Baldricks Bald for a Cause event and, for those that don't know, the St Baldricks Foundation raises money for pediatric cancer research and that event is going to be March 24th from one to six at Fainting Goat in Fuquay Varina. How is this your first year getting involved with St Baldricks?

Justin Crawford:

This is my first year actually participating in the event. I have certainly donated in the past and what moved me to get involved in this capacity this year? I donated a lot to, you know, close friends of mine to help them. Last year and this year I thought, you know, I wonder if I could do more by actually participating and trying to raise funds. And you know, so far that's been a huge success. In my mind and, I think, in our team's minds. You know, it's more than double what I've been able to raise versus what I would have been able to donate. So from that standpoint, you know, I'm extremely thrilled to do it and the results have been great. So this will be my first time that I will have a buzz cut or shave in quite a long time. So we did reach that goal. So I will definitely be getting shaved at the event.

Amanda Benbow Lunn:

Now are you doing your head hair and your facial hair, or is it just one?

Justin Crawford:

So the plan and what I'm hoping to achieve if I reach $2,000, I'm going to do the Guy Fieri look with green hair for a week. So I'll actually have my facial hair, you know, cut the way he does it and it'll be all green. I figured last year probably my 10 seconds of fame was dressing as Guy Fieri for Halloween and you know, some of my friends kind of took me around town and took some photos and posted it on a lot of the local social media sites. And now when people see me they're like oh, you're Guy Fieri, a friend of mine a long time ago, travis, if he's listening, he Travis Lau.

Justin Crawford:

He and I worked together for a while and one day he comes up to me he's like you know, you look like that guy from the Food Network. And I was like what he's like? Yes, you know that guy, he's like I think his name is Guy. So I look it up and sure enough, I was like, geez, I actually do look like him. So over time I guess I've embraced it and, you know, did the Halloween thing. It was funny and that was actually right around the barbecue blues and bruise. So I kept that look for another week to look like him during barbecue blues and bruise. So I think that was another way for people to be like oh my God.

Amanda Benbow Lunn:

When I looked last night, you've raised $1,236 so far. That's correct your goal is 2000. If you hit the 2000 mark by this Friday, march 15th, that is when you will have your hair and facial hair turned bright green, and then your plan is to also be in the Raleigh Parade, correct?

Justin Crawford:

That is correct. I'm really hoping that I get to show that look during the parade. My friend, Mat Quiring, is a revelry barbershop. He's agreed to do that for me. He actually helped me get the Guy Fieri look initially, so he's fully on board. I just saw him yesterday and he can't wait, so I'm really hoping that we get there.

Amanda Benbow Lunn:

Excellent. So yeah, St Baldrick's Foundation is near and dear to my heart because back in 2013, my youngest daughter, who was not quite two, was diagnosed with cancer and I don't know, I probably from about two weeks. I actually saw her tumor and I didn't know that that's what I was seeing, and so she has what's called retinoblastoma. So it's in both of her eyes and generally photographers and parents diagnosis before any medical professionals. It's supposed to be very rare and it shows up in flash photography as a white glow in their eyes and so you take the picture and kind of like the red eye, it's this white demonic eye glow, and so I actually saw that in person every now and again and it would come and go. But I had a friend once who we were at a bar celebrating her birthday and when I looked at her I was like, man, is your eye glowing? Like am I seeing things? And she's like, oh yes, it glows. And then we just moved on, we didn't talk about it. So when I saw it in my daughter, I'm like well, I mean, she does have some health issues like diabetes, so maybe it's a warning sign of something or I don't know, because it kind of looked like the when I saw it in person the yellow, greenish iridescence of an animal's eye. So I'm like, well, maybe she'll have some connection with animals, which she actually does. But when she was about 18 months old we took my other daughter to her well visit and at this point Amber's eye was veering to the right. So the doctor said, okay, it's time for her to go see the eye doctor, potentially for lazy eye. And so I was trying to battle with how in the world am I going to keep this eye patch on her face so that she can work that musculature? And little did I know. Sat in Dr Vito's office and sweetest eye doctor, he was like I need you to fill out this information. I'm setting you up for an appointment today to go to the specialist and you need to be there. You need to bring a bag for the hospital because it's possible that she will have emergency surgery tonight to remove both of her eyes. Wow! And so perspective.

Amanda Benbow Lunn:

I was worried about this stupid eye patch when now I was faced with my baby, who wasn't two, who had just told me at Walmart the week before she was saying something, and I was trying to figure out what she was saying, and she ended up saying ball, because she saw a ball way on the other end of Walmart and I thought, wow, I didn't know kids could see that far, but that's pretty cool that she can. And then after his visit I learned that she was blind in one eye and probably had been for quite some time, and that the tumors were starting to grow in her other eye as well. And so from that moment on we went to Duke and she had a couple of rounds of chemo and then we ended up Dr Fritz, an orthodontist in Holly Springs, had mentioned her sister wasa nurse, anesthetist, or Dr Abramson at Memorial Sloan Kettering Cancer Center in New York City, and that was a really big step for us to try to see if they might be able to help our little girl. And we did that because they offered a different type of chemo. So here at Duke at the time they just offered the regular systemic chemo, so general IV. That chemotherapy affects the entire body. She only had two rounds, but they wanted to do six and they had told me that only the first two would actually kill the tumor and then after that it would just hold them steady or stable. And so I was questioning as a parent, why on earth would I put my baby through six rounds, If only the first two were actually going to kill that tumor or those tumors? And so when I reached out to Dr Abramson and his staff, they immediately called me back. They chatted for an hour, going through all my questions. They offered what was called intra-arterial chemotherapy. So they knock them out and then they insert a catheter from the groin all the way up to behind their eye and they shoot the chemo directly at the eye. And what's great about that chemotherapy is that it's a really, really small amount but it's targeted right where it's needed.

Amanda Benbow Lunn:

And so we did learn from the first two rounds of the systemic chemo that she was going to lose her right eye. The tumor was way too big and when the chemo hit it it kind of exploded the tumor in her eye, and they weren't quite sure where it extended. They couldn't see the back. And so the fear with retinoblastoma is that you have a little hole in your eye where the optic nerve comes in, and if the tumor stays within the eye there's like a 95% survival rate. But if the tumor escapes through that little hole of the optic nerve, the odds of survival go down drastically. It can spread, and it can spread quickly, and so they were worried that it might spread or it might be at that hole. And so we did have her right eye removed, which as a parent is really tough. You don't know how that is going to affect your child for the rest of their life, and I will say that removing your eye is an outpatient surgery, surprisingly enough.

Amanda Benbow Lunn:

And so we were sent out of the hospital that afternoon and then we flew back to North Carolina the very next day, and on that flight leading up to this, Amber had said a few words like here and there, like one or two words together. On that flight back she talked nonstop, and so from a parent's perspective, that made me feel so great because she did so well and it obviously had been causing her some sort of discomfort, because the second it was out she was speaking like she had never spoke before. And one thing that really why I really love the St Baldrick's Foundation is because one they're really good at giving back the majority of the money towards actual childhood cancer research. But the other reason is these kids really, really, really need better treatments. A cure would be lovely, but they really need better treatments. Over the past three decades, only seven new drugs have been formulated specifically for children. A lot of the other drugs they formulate for adults and then they just kind of wing it for the kids. I remember I think Amber had five different drugs three drugs when she had the systemic chemotherapy and then one of those drugs and two others when she did the intracraterial chemotherapy, but one of those I believe that was in both of them.

Amanda Benbow Lunn:

As I was signing the consent forms, I was looking at the short-term side effects and the long-term side effects, and one of the long-term side effects was leukemia. So as a mom going through a really tough journey, seeing my baby going through a really tough journey as I was signing that document, all I could think of is is this as far as we've come, I'm giving my baby this medication to stop one cancer that could cause another cancer that has a worse prognosis. Am I doing that to my child? And so for me putting as much research into this as possible so that another family doesn't have to make that really tough decision. They're a bunch of sucky choices and you just had to choose the best one. One in 285 children approximately 15,000 children in the US will be diagnosed with cancer before their 20th birthday. Every 80 seconds somewhere in this world, a family will hear your child has cancer. And I was not involved in organizations like this before my child had cancer. So it's super meaningful to me that you're going out of your way to do this, Because if I can stop one person from hearing those words your child has cancer, I can stop one person from having to hold and pin their child down so that they can take the medications and be put to sleep for all these rounds of chemo and treatments.

Amanda Benbow Lunn:

It is worth it, and not every cancer is hereditary. The problem, one of the difficult things that I think about, is when an adult has cancer not always, but sometimes there's a reason. Right, we made a choice. Smokers choose to smoke. Lung cancer is a potential complication. We go out in the sun for not putting on sunscreen. Skin cancer is a potential complication. But these kids, quite often they haven't done those things. They haven't made those choices, whether it's environmental or genetic. They're just faced with this really hard journey that might affect them for the rest of their life. One out of every six children with cancer in America. They do not survive five years and nearly 60% of childhood cancer survivors experience severe complications in adulthood.

Amanda Benbow Lunn:

This is one of the reasons why with healthcare we were blessed just after, I think, Amber was diagnosed, as when the Affordable Care Act went into place, but just prior to that I had to think about how my little girl, who wasn't two, would likely never be able to get insurance because of a preexisting condition. And with her we did the genetic testing and my ex had a gene that mutated, so he had one allele of a gene that mutated and when Amber was growing, her second allele, so she copied my ex's allele and then the second allele mutated which gave her the retinoblastoma. And now if she's able to have kids which she might not because of the chemo it is possible that any eggs that she had are damaged, but we won't know that. But if her eggs are viable and she is able to have children, she has just under a 50% chance of passing that cancer on to her children. So this is something that not only did she have to deal with once, but she could have to deal with multiple times in her lifetime between children, possible grandchildren, great grandchildren and her families. We had for probably six, seven, eight years, out of pocket costs for probably $10,000 a year. We hit her out of pocket maximum almost every year. She's due for a new prosthesis. This year that prosthesis is probably going to be close to $4,000.

Amanda Benbow Lunn:

And so, also from a financial aspect, children have to pay for the side effects of their cancer for a very, very long time, compared to adults. When we potentially get cancer, I think the average years of life after cancer if they survive is about 67. And so that's 67 years that they have to worry about. Will they be covered under insurance? What medications do they now have to take to compensate for some of the side effects when they were younger? And so any money that we can pour into childhood cancer research is super important, is super important and it's meaningful, even if it's just a dollar. If you're able to give $1, that could be the dollar that makes all the difference.

Amanda Benbow Lunn:

Okay, I wasn't quite ready there. It's been 10 years, just over 10 years now, and so, as I was thinking about this podcast this morning, like some of those emotions were hitting and oh, okay, but we are blessed. She is here with us, she has minimal side effects, she's now in middle school. We're blessed to have her in our lives, but so many of the kids that we've met along the way, they're not here today, and so thank you for standing up, Thank you for raising money and doing what you can. It really, really, really makes a big difference.

Justin Crawford:

Well, I appreciate that and again, thank you for sharing your story. It's sad that there's so many stories that are out there and for me, I hear those stories and you just put yourself in the shoes and, like man, I don't know how you made it through it. I'm very happy that you can talk about it today, but that really what gets me is it's not fair, it really isn't, and especially for kids to have to go through that, and I want to do my part and everything that I can do to help families and kids that are having to go through that and prevent it.

Amanda Benbow Lunn:

And so retinoblastoma is supposed to be one of the rarest childhood cancers. There's approximately 10 different cancers that kids generally get and I think the last statistic I saw about 300 children in the US will be diagnosed with retinoblastoma every year. So back 10 years ago we had a fundraiser Community was awesome. So many people came together to help us financially and just be there for us in a variety of ways and for that particular event we made the news and we were spreading awareness and I remember getting at least five different calls from people within 100 mile radius that their child too had retinoblastoma. And since then I think I've been aware of two in the local Holly Springs Fuquaverina area and as we move further from diagnosis I kind of lose touch with some of those circles. So I'm not as aware of how many more children are being diagnosed. But if there are that many children with retinoblastoma in this area, it is heartbreaking to know how many children have suffered from all the various types of childhood cancer.

Amanda Benbow Lunn:

I know lots of people are familiar with Meg's Smile Foundation. That is a nonprofit that's run from Holly Springs and Meg's family. Meg passed away, I want to say, at the age of nine, from neuroblastoma, I believe, and their family has set up Meg's Smile Foundation so that families and that particular child can have a reason to smile when they're going through a really, really hard time. And that's important because, goodness, when you're going through the trenches, hope is the most important thing and to see your child smile fills your bucket so much so that you can continue to go on and carry on and help your child get through this. And then there's another organization in town called Zach's Toy Chest, and Zach was another child who's local Holly Springs diagnosed, and he is still with us, thankfully. I believe he's in high school now older high school.

Justin Crawford:

High school soccer team.

Amanda Benbow Lunn:

Yes, and I know his mom their family set up Zach's toy chest to provide the hospitals with toys for their toy chest, and you never know how things are going to come back and connect. But our first time at Duke, amber was put under. So I mean, literally I was holding her and it felt like they were smothering her with a pillow and her arms were flapping until she was out and that alone. I had to go to a corner in a hospital and cry and get myself together because they needed me to be strong. So I had to be there. But once she was back in the room, she still had a couple of blood pricks that she had to undergo and they brought out a doctor's kit, a toy doctor's kit. And my other daughter is about 17, 18 months older and these kids, they played with that doctor's kit. The medical staff gave masks and gloves and a lot of the cheaper equipment, disposable type of equipment that they would use during her treatments so that they could play at home with them, because play for kids is a learning experience, it makes things less scary, and so the more they played with all the tubes and the gloves and the masks and the stethoscopes. When she then went to the doctors, she was able to do those procedures with less fear because she knew what those things were and she had formulated a comfort with them. Now she never liked shots or pokes and she still hates the smell of coflex tape which, if you give blood, that's generally what they'll wrap the bandage around to hold the gauze on. But that toy, I learned later, was donated by Zach's Toy Chest.

Amanda Benbow Lunn:

So all of these organizations significantly help families in need and ever since I have also participated in St Baldrick's and I have cut my hair three times, shaved it, and for any of you who might be considering joining events, there are lots of events around the Raleigh area. There are a few here locally every year. But as a woman to shave my head, there was a lot of anxiety there. It's not normal, many don't do it, but I have a kid, a kid that's going through all of this, a kid that may continue going through all of this, and so it's really important for me to do all that I can to help her succeed and to help other families and not have to hear your child has cancer. And what I learned was, oh my goodness, I had so much anxiety in my hair that I didn't even know I had, so when it was cut, feeling the breeze on your scalp feels amazing.

Justin Crawford:

I bet that was a weird one the first time you did it.

Amanda Benbow Lunn:

It was Like it's just the way you notice a breeze. It's something so small, but like I noticed it in a way that I had never noticed it before and I could be aware of it in a way I could never be aware of it before and it was just the silver lining and just a blessing to feel. And I do want to say that me shaving my head was a choice. I was blessed with that choice, and so my reaction to it is probably very different than other folks who don't have that choice. They're going through a medical treatment or just a genetic something or a disease where they lose their hair. That's not the same.

Amanda Benbow Lunn:

So I don't want this to be light-hearted about losing one's hair, but for me, for it being a choice, I could ride in cars with the windows down or a convertible and not care. I could just enjoy and not worry about. Oh my goodness, this is going to take me 10 years to detangle my hair. It's going to be all over the place when it rains. I never knew how much anxiety I had when it rained. Oh my gosh, I have to do something different with my hair or else it's going to frizz up and it's going to do X, y and Z. When you have no hair, you can just go out and enjoy the rain.

Justin Crawford:

It doesn't matter.

Amanda Benbow Lunn:

It's going to be dry in two seconds once you go inside. Showering so much quicker takes two seconds to dry off Such a different experience. So if you are thinking how can you help, what are ways that you think of that people can help?

Justin Crawford:

Well, I think you embrace these organizations that have a purpose and have a goal of helping in some fashion. It doesn't have to be a huge to-do. Do your part to try to get involved. Figure out a way to be able to give back. Again, I would say, think about the people that are going through this and try to help. I mean, it's every little bit counts, just as you said, and I love the story about Zach's toy chest and how that came full circle.

Justin Crawford:

It's a fantastic organization that people listening to this are not going to see it, but I could see you smiling in reflecting on such a scary time in your life and a memory from that was an organization's purpose in helping you during that time. So find something that you can at least get behind. Maybe me personally, I haven't, thank goodness, have had to deal with a childhood cancer thing, but I'm a parent and I can 100% relate to the pain that you'd feel going through that, and so this is a fantastic event organization to get behind. But for anybody listening, just find something that you can give back. You can help in some way.

Amanda Benbow Lunn:

And I'll share a little bit. We were gifted with a Meg smile as well, and one of their requirements is that you have your Make-A-Wish trip first, because if you have a smile first, make-a-wish won't grant a wish. And so we were blessed with Make-A-Wish to go to Disney. The girls. When I asked them, mind you think they were three and four maybe, and it's like, if you could do anything, if you could go anywhere, if you could meet anyone, what would you want to do? We want to ride a unicorn. Okay, well, there's this place called Disney, and I had learned that the place you stay at Disney with Make-A-Wish is called Give Kids the World Village and that they did horse rides. And so I was all geared up. I'm like, okay, we're just going to throw a birthday hat on one of these horses somehow and we're going to call it a unicorn and that will be the girls wish, and then Disney is just going to be the bonus. But at Give Kids the World Village there was actually a carousel right on site and we got there, I took the girls to kind of tour while Scott was unloading and, lo and behold, there was a unicorn on the carousel. And so the very first thing that they were able to do was ride a unicorn, so that was fantastic. And then Amber Smile was back in 2018.

Amanda Benbow Lunn:

And Amber does not do well being put under the drug she's given Gosh, I don't know, because she's so young, so it's really hard to describe what she's going through, but it's almost like they give her hallucinations. They give her a really bad headache. They have to dilate her remaining eye to make sure that they can see all the tumors and to make sure that they're not growing. And when she would wake up from that anesthesia she did not want to be comforted by me she would flail her arms Mind you, she's two. She would yell at the top of her lungs Let me down. By which she would roll around on the floor it's a hospital, but it's still a floor, and so she's going through chemo. So then you think about germs and you're like, well, do I let her just roll around on the floor? Is that the best option? And at that point that's all she would allow us to do. And sometimes she would scoot away like she was seeing things. So I don't know that she had hallucinations, but I figure that she must have. And then afterwards it would be the sun would be really bright and she'd have a headache. So I was very communicative with her.

Amanda Benbow Lunn:

She did better when she understood what was coming, when we could give her options, and so at one point I was telling her that she had to take the medicine to be put under for her MRIs, but there could potentially be the option where she didn't have to have the medicine if she could lay still in an MRI machine for the hour hour and a half that it took. And at the age of three she decided that she did not want to have that medicine. And so my three year old laid completely still for almost an hour and a half in an MRI machine. That many adults need vast medication to be able to do. And she got through that by listening to one of Taylor Swift's CDs and she cracked me up. She was going through a Taylor Swift phase at that point, and I think we're back to a Taylor Swift phase, but at that point she was like Mommy, taylor Swift is my biggest fan, and so it cracked me up because she meant it.

Amanda Benbow Lunn:

The other way of course, but what Meg Smile was able to do for us was to get us tickets to a Taylor Swift concert, which at that point, they handed you wristbands that kind of lit up to the music and they flashed, kind of like the lighters did, but they were in sync and they were different colors and it was fabulous.

Amanda Benbow Lunn:

And right before she was coming on stage, the lights dimmed, everybody's wristbands were starting to light up, and the look on her face, oh my goodness, like the look of surprise seeing Taylor Swift, the look of amazement that she was in the space, the humongous smile that filled her face, that is an image that I will have in my heart for forever, and luckily I was able to get a picture of it. So, so long as Facebook is still a thing, I'll see that every year on my memories. And so each of these organizations has value. Some of them are trying to help kids not have to go through this. Some of them are lifting up children and families and even siblings while going through these battles. I know another organization that I raised funds for is Alex's Lemonade Stand, and that was created because a little girl who was going through cancer treatments wanted to help her doctors help other kids, and so she set up a lemonade stand and raised like a million dollars.

Amanda Benbow Lunn:

Oh battling cancer.

Justin Crawford:

Wow.

Amanda Benbow Lunn:

Having a lemonade stand and having people show up. And there is a family here in town. Their daughter went to school in Pennsylvania where Alex lived and to this day that school. When Alex was going through her battle she's unfortunately passed away but when she was going through her battle and still attempting to go to school, they built in a chair every so many feet in her school so that she could walk to the chair and take a rest before proceeding to the next chair. And those chairs are still there in that school.

Amanda Benbow Lunn:

So that was kind of cool to hear that come full circle from somebody in this local area who had an experience in that way as well. So, yes, there are so many ways to get involved. You can find local St Baldrick's events. You can set up a lemonade stand with Alex's Lemonade Stand Foundation. There's Meg's Smile Foundation, zach's Toy Chest. There are so many other organizations that help children with cancer or children with medical illnesses. But let's get back to your event that is happening on March 24th at Faintingoat. Tell me a little bit about what's going on there.

Justin Crawford:

Yeah. So I believe it's revelry that's going to be cutting people's hair and there's going to be live music, obviously, access to the brewery to have a nice drink. I think there's going to be some food truck. So it'll be a fun event and I think it's an opportunity to reflect on the fundraising achievements but also to understand the purpose of the event, and you have to embrace that as part of the event. That's why you're there. I'm looking forward to it. I hope people show up. I hope people show up and donate.

Justin Crawford:

It's amazing to hear some of the stories about the impact that these organizations can have. I personally had not heard of the Alex Lemonade Stand, but it's incredible to think being able to raise a million dollars through a lemonade stand and I think that the person listening to this that's like how can I contribute? How can I do anything? Well, by a lemonade, I mean a million dollars from the lemonade stand is incredible. But I think it speaks to when the community can get behind something, everything counts and you create something huge out of it. You know, come out, enjoy the event. Hopefully you'll get to see some green hair get shaved off and we'll have a lot of fun while we support a really good cause.

Amanda Benbow Lunn:

Excellent. So that is one to six pm at Fainting Goat, which is 300 South Main Street in Fuquay Varina, and again you've raised just over $1,200. Now you are looking to raise 2,000, more than 40,000 children undergo treatment for cancer each year. So just by doing this I think it's through the Alex's Lemonade Stand Foundation, where I learned that it takes $400 to do research for one day so one day, one moment, one breath in one breath, your whole life can change. I wasn't a childhood cancer parent until that one breath, and now I will always be a childhood cancer parent and I am blessed in a way. A lot of parents are not.

Amanda Benbow Lunn:

Amber's last active tumor was in August of 2015. So, knock on wood, she has been tumor free and she has had no new growth. And how miraculous is this? She has about seven tumors at one point in her left eye. Yeah, technology was great enough 10 years ago to show that if that tumor was slightly bigger or just 60 cells shifted to the right, she wouldn't be able to see. Wow, 60 cells shifted to the right, she would be completely blind. But through their treatments she has glasses. She has a stigmatism, but she can see and she can function as a child. And some of the silver linings, because I love to find them.

Amanda Benbow Lunn:

At the age of not quite two, she had to have a spinal tap and her workplace. Afterwards they gave hydrocodone and they said you'll give this to her every so many hours. We gave it to her that night. The next morning I go to give her that medication and she says no, mommy, I'm a tough girl. And so then as a parent, I'm like, oh my goodness, like do I allow you the autonomy to make this decision? Do I just give you this medicine because I'm pretty sure you need it? And so I just I didn't. And I watched her and she did okay. And talking to the nurses afterwards, they're like oh my gosh, we have to wean the adults off of this stuff, because they will just take it and continue taking it. And I think as adults we don't have the mindset of children. We know scary things can happen. We know that there are other options. When something bad happens to us, we bemoan our fate, we lay in bed, we get depressed, we question why? Me and for a lot of these kids that's their normal. They know no different and so it might knock them down, but they are so darn resilient. They get back up.

Amanda Benbow Lunn:

When she had her port taken out, they said this time she'll do well with just Tylenol. And again at the hospital, she was three. At this point we could not give her the Tylenol. She had to take it herself. And I'm like, oh, no, no, no, she has to do it. If you don't let her do it, she will melt down and this will not be great for anyone. And so she took her own medicine.

Amanda Benbow Lunn:

And then the next time it was due, we were in Central Park and she was doing what she loved to do best in New York City at that time, which was chase pigeons. She was chasing pigeons around Central Park after having a double anesthesia and her port removed. And when I went to give her or let her take the Tylenol for her second dose, she goes mommy, it hurts, but it doesn't hurt bad enough for medicine. And so I'm like through the mouths of babes. There is so much for us to learn and to take in. But yes, again, thank you for all you're doing, thank you for being with me on this podcast and lifting up this cause, and just thank you for being an active member in our community and helping others find community and helping our town to grow and just be better for it. So thank you, thank you, thank you.

Justin Crawford:

Absolutely. Thank you for having me on, thank you for sharing the story and all the best wishes in the world for you and everybody out there.

Amanda Benbow Lunn:

Ways people can help. Again, you can show up for these events. Showing up really really means so much. You can donate. Any amount is helpful. You can show up at the events and donate. I will have a direct link to Justin's St Baldrick's page in which you can just donate directly online. It is super easy. You can find an organization that calls to your heart. There are so many organizations around this area and all of them need some level of support, but by showing up for one another and being there for each other, we truly create the charm that so much of us love in this area. Is there anything else that you would like to add before we close up?

Justin Crawford:

No, I don't think I could have said anything better than what you just said. Right there. It is showing up and just trying to be involved. You don't have to give a fortune to really contribute, just show up.

Amanda Benbow Lunn:

All right, Now I do have a lightning round of questions that I'm going to ask you. This is a little fun and levity and helps us get to know you on a different level. What is your favorite book?

Justin Crawford:

Harrow and Diaries by Nikki Six Awesome.

Amanda Benbow Lunn:

Who is someone you look up to and view as a role model?

Justin Crawford:

Andy Brady and Brian Brady in Roanoke Virginia.

Amanda Benbow Lunn:

Okay.

Justin Crawford:

Do I need to say why? Sure, go ahead. They were my kind of mentors and trainers in getting into green home solutions and they are very active in their community of multiple businesses and things like that. So I think I'd try to emulate some of the things that I've learned from them over time.

Amanda Benbow Lunn:

And what is your favorite way to relax and let go?

Justin Crawford:

Sit on a beach with a fishing pole hook in the water.

Amanda Benbow Lunn:

Just sit there. What's the biggest fish you've ever caught?

Justin Crawford:

Shark.

Amanda Benbow Lunn:

What.

Justin Crawford:

You know, sharks fight really, really hard. I've caught a big shark and I caught a really big stingray one time just surf fishing. I thought it was going to be a big fish and it turned out to be a giant stingray. I fought that thing for probably an hour before I got it on the beach and it turns out to be a stingray. So I hook out and get him back in the water.

Amanda Benbow Lunn:

What's one thing that fills your heart with joy?

Justin Crawford:

Spending time with my family, away from my kids.

Amanda Benbow Lunn:

What's your greatest?

Justin Crawford:

weakness. I have a lot of them.

Amanda Benbow Lunn:

I think it's.

Justin Crawford:

Don't we all? Sometimes I get down on myself. Yeah it's easy to be your biggest critic, I suppose, and so that's probably the weakness of mine is just kind of getting down on myself from time to time. Okay.

Amanda Benbow Lunn:

What was one thing you wished for as a kid?

Justin Crawford:

I wanted to be a professional basketball player, but at five foot seven, that wasn't going to be a reality.

Amanda Benbow Lunn:

Did you play basketball in school?

Justin Crawford:

I played a lot of basketball and a lot of soccer growing up. Football from time to time, any sport you know, I would embrace it and I enjoyed playing it, but I think soccer and basketball are probably my two best. Nice.

Amanda Benbow Lunn:

What's something on your bucket list?

Justin Crawford:

I have a lot of them. One of the things we really enjoy doing is going to national parks and state parks and things like that. So I want to go places like Utah and a lot of places that have some beautiful national and state parks and visit as many of those as possible.

Amanda Benbow Lunn:

Perfect. And what is your favorite thing about yourself?

Justin Crawford:

I think it's trying to find the positives and things you know I mentioned earlier. I'd kind of get down on myself, but you take that second and kind of say, okay, well, what can we find the positive about this? How can we turn this into either a learning opportunity, or where's the positive, Where's the silver lining? You mentioned that earlier. I think that that's a mindset that I tried to have.

Amanda Benbow Lunn:

Well, thank you so much, Justin. Again, he owns Green Home Solutions. It's an indoor air quality company that specializes in mold remediation, indoor allergen treatments, crawl space encapsulation and odor remediation. Again, if you're able to help any of these organizations, it's great. If you're able to show up for the St Baldrick's event on March 24th from one to six at Fanningoat, we would love to see you there. And the other option that I like to throw out there is you can always support the cause, but you can also support the people who are supporting the cause. So, if you need indoor air quality improvement, if you have mold, if your crawl space needs encapsulated, I would highly, highly, highly recommend that you seek out Green Home Solutions with Justin. I will have all of his business information and social media connections on our website in the show notes of this episode. But thanks again, justin. I really appreciate you being on and being a positive aspect in this community. Thank you for shining your light.

Justin Crawford:

Thank you so much.

Amanda Benbow Lunn:

And that brings this latest installment of the North Carolina Deep Dive to a close. Thank you so much for listening and taking part in raising the awareness, not only for childhood cancer and those helping within our local communities, but for also shining a light on ways we can build community, support one another and foster the small town charm so many of us have come to love. May you always remember, when things get hard or overwhelming, to look for the helpers and or do the next right thing, for you are the only you and you have a brilliant light. Only you are able to shine. Your part within our community is of immense value and I thank you for showing up when and how you are able.

Amanda Benbow Lunn:

Again, Justin's St Baldrick's event will be Sunday, march 24th, from one to six PM at Fainting Goat in Fuquay Varina. All are welcome to come cheer on those shaving their heads and help raise funds for pediatric cancer research. There's almost always an opportunity for you to join in as well. If you'd like to participate as a Shavee, you can either do so through Justin's St Baldrick's link that we'll have in our show notes or when you arrive at the event, as always. If you have any topics or thoughts you'd like to share. I'd love to hear them. You may share them through social media or by emailing me at ncdeepdive@ gmailcom. If you found value in today's episode, I'd really love for you to subscribe, rate and review it so that others are more easily able to join in as well. Please be on the lookout for future episodes by visiting www. ncdeepdive. com, apple Podcasts, spotify, audible or wherever you currently listen to your podcasts. Until next time, my friends, namaste, the love and light in me sees and honors the love and light in you.

Community Engagement and Involvement
St Baldrick's Fundraising and Personal Connection
Parent's Journey Through Child's Retinoblastoma Treatment
Childhood Cancer Awareness and Advocacy
Children's Cancer Organizations Make a Difference
Children's Cancer Charity Event and Stories
Supporting Community and Childhood Cancer