Libby Kranz shares her personal journey of turning grief into action after losing her daughter to pediatric cancer. She discusses the creation and growth of her nonprofit organization, Unravel Pediatric Cancer, which aims to fund innovative research and spread knowledge about pediatric cancer.
Libby emphasizes the importance of authenticity, honesty, and being true to oneself in leading a movement. She also highlights the challenges in pediatric cancer funding and the need for disruption in the system. Despite personal obstacles, Libby remains committed to her mission and offers words of wisdom and comfort to families facing similar experiences.
In this episode, Libby Kranz discusses the impact of pediatric cancer and the terrifying reality of the disease. She shares her experience of losing her daughter and how it has changed her perspective on life. Libby also provides insights on how to respond to someone who has lost a child and the importance of genuine support. She talks about the gift of seeing life differently and the regrets she has regarding her involvement in the fight against pediatric cancer. The conversation concludes with a discussion on the power of personal impact and the reality of pediatric cancer statistics.
Notable Quotes
“You can only heal a real wound if you really dig in and clean it out.” – Libby Kranz
“Knowledge is like glitter. It sticks with you.” – Libby Kranz
“Parenthood is scary enough sometimes that people can’t take on another worry and fear.” – Libby Kranz
“You know, don’t wait to invest in what you care about.” – Libby Kranz
Useful Links
Reach Libby at
Websites: https://unravelpediatriccancer.org/blog/
https://unravelpediatriccancer.org/get-involved
https://unravelpediatriccancer.org/get-involved
Fact Sheet: https://static.showit.co/file/260rTyhyRMGp0vlnjPRvuA/109687/long_infographic-cancer_facts.png
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Transcript
Dr. Jessica Kriegel: second sorry.
Libby Kranz: So come.
Dr. Jessica Kriegel: Here we go.
I gotta get all my ducks in a row. Okay.
Dr. Jessica Kriegel: Well, Libby, thank you for joining us. And I’ve spent a lot of time looking into your story and Jennifer’s story. So your why seems very clear, but can you articulate what your personal why is today?
Libby Kranz: Yeah, I think my why has very, for me personally, has very little to do with Jennifer and has everything to do with my four surviving kids. As we learned the statistics and probability of someone in our life feising a childhood cancer diagnosis, I realized I had to do something. So kind of jokingly, half jokingly maybe, say that if I did it for her, I’d be sitting in a corner crying and scrapbooking, because that’s what’s for her, because she’s not here with us anymore.
Um, so it really is for my surviving kids, for the kids I hope they one day have, um, from my nephews and nieces. That really, that is why I do it. Cause I’m selfish and I’m terrified that it could touch my life again.
Dr. Jessica Kriegel: Yeah. Tell us about the journey you went on from this moment that is heart-wrenching and life-changing for you and your whole family and your whole community, I would imagine, and then turning that into action. Don’t just be sorry, be active, right? I mean, how long did that take for you to realize what you were going to do with that moment?
Libby Kranz: Oh, part of it was instantaneous. I never even knew that there was such thing as like terminal upon diagnosis for pediatric cancer. And that struck me that first day in the hospital finding out not only she had cancer, but that it was terminal. I couldn’t believe it. And I don’t like being surprised. I consider myself fairly educated and knowledgeable and felt kind of like a super mom. And like, I knew all these things and was ready for anything parents could throw at me.
So it kind of all started then. And then as we read and learned more and more statistics and facts, it galvanized it. And when Jennifer passed away, I spoke at her funeral. And I remember one of my older brothers said, Liv, I don’t think you can do this. You know, and even I think in the middle of it, it hit me. She was with me. I was able to connect to her and I didn’t feel alone. And I felt this.
That was bigger than me and I said, oh, this is it. I don’t know how or what this means, but I wanna talk, I wanna share. And I think that was probably the real start of it was those couple of touch point moments.
Dr. Jessica Kriegel: Hmm. And so you were managing this unthinkable grief and then you decided I’m gonna start this nonprofit organization. I mean, in that moment, did you know that’s where it was headed or did you know that’s what you were going to do? Because there’s a lot of ways to galvanize, right? I mean, when did that organization begin in relation to that moment you gave that speech?
Libby Kranz: Yeah.
Libby Kranz: I think it began pretty quickly after I was asked to speak at someone else’s event. Just like a mom that was moved by pediatric cancer, had never personally been touched. And she asked me to speak and I loved what she did. And I said, hey, listen, what if we joined efforts? What if you kind of come, I’ll create a board, you jump on our board and we’ll take this event and we’ll bring it to other cities and other towns. And that was probably the birth of it. We at that time didn’t even really have a name for the organization. I had a symbol.
Because I’m not very artistic, and I drew kind of like a cancer ribbon. When I was probably talking on the phone to my husband one night as we were staying at the hospital and he was at home with the little kids, and I had a tail coming off of it, and that was the start of it. I went, oh, that’s it. That’s what I wanna do. I wanna start with the hardest to cure cancers and pull that and unravel all cancer. So that idea of unraveling the thread was where it all started, and joined up forces with this other woman.
And kind of absorbed what she had started, the event she did in her town, and took off from there.
Dr. Jessica Kriegel: How did it take off? Was it grabbing attention immediately? Was it a slow burn? What was the rise of the organization like?
Libby Kranz: It was a snowball going downhill and caught momentum real fast. Our very first fundraiser was less than a year since diagnosis and so far less than a year from when she passed. And we got in 49 out of 50 states. So that was pretty remarkable. And we went, okay, I guess we’re onto something here. And we just kept growing quick. I think I blogged pretty openly.
Dr. Jessica Kriegel: Hmm.
Libby Kranz: Throughout Jennifer’s journey, but then most importantly, I think after she passed and people are voyeuristic, I think, and…
We watch movies or read books to imagine the unimaginable and get ourselves inside of the people’s heads and experiences. And my blog was, is a very, very honest journey into that. I said I was my surviving kids during the day and I was hers again at night. And I blogged everything, my deepest, darkest truth as a way to dig in. You can only heal a real wound if you really dig in and clean it out. And that was a nightly ritual every single night for probably two and a half years. I did that.
Dr. Jessica Kriegel: Hmm. So what strikes me is how much powerful imagery you use. I mean, you just described unravel and that image of unraveling the cancer ribbon. You just talked about that every night having to, what did you say, say that again? Digging in the wound, right? That’s a powerful image. You also, can you talk about glitter? I mean, that’s another one that jumped out at me.
Libby Kranz: Digging in the wound is the only way you can clean out. You gotta dig deep. Yeah.
Libby Kranz: Yeah, Jennifer loved glitter. My husband, like I think a lot of dads of daughters hates glitter because it spreads everywhere. So when Jennifer was, it was actually Thanksgiving or like a day before Thanksgiving and I was no fool. So I did this at my parents’ house in their garage, not mine, but we did a glitter photo shoot where she threw glitter and we got everywhere. And I mean, she, one of the almost iconic images is she tosses it up in the air and it makes a heart shape. And it just happened that way.
Dr. Jessica Kriegel: Go ahead. Yeah.
Dr. Jessica Kriegel: Yeah
Libby Kranz: And we found glitter for months. She was gone and we still would find glitter in places. And our thought process was knowledge is like glitter. It sticks with you. If you are given pieces of knowledge, truths of pediatric cancer, it can stick with you. And then all of a sudden, if you touch someone else, it spreads to them unknowingly sometimes, and it just can spread and multiply somehow magically from there. And that’s our hope is that what we share with our organization, we’re not funding.
Fundraising is also our number one, but spreading the knowledge and the facts so that parents never have to feel the way I felt like the rug was pulled out from underneath me. I don’t want people to feel that way. It was a terrible, really vulnerable feeling. And so that’s our hope is that we spread that knowledge.
Dr. Jessica Kriegel: So this podcast is about the masters of movements and you’ve created a movement. I think that imagery and these stories, the way that you tell the story and the way that you create a vision of what you would like to see happen and what the impact is that you’re making, that can be really powerful. What do you think has been the biggest secret weapon that you have in creating that snowball effect, that momentum building?
Libby Kranz: Honest to a fault maybe but also with myself I know what I’m good at and I know what I’m not good at and I’m not embarrassed or
I’m too worried to say I know I’m a good public speaker. I know I’m a good writer. I didn’t know any of that before this. I do know it now. I know that I’m not a eye-daughter and a T-crosser. So I brought in people that could help with that. I know I’m not a Pinteresty, beautify type of person. So I know throwing event, I can make it, I can bring in the impact, but I can’t make it pretty or, and I’m funny, I can make the event fun, but I need someone else to make it organized. I need someone else to make it pretty and make sure we have all the things we need. And so I was able to build a team around us of all volunteers in the beginning that fulfilled all of those needs that we have. But the key is really being honest with yourself of what you’re good at and what you’re not good at. That, to me, has been the key always to the success of our organization.
Dr. Jessica Kriegel: Mmm.
Dr. Jessica Kriegel: Not just what you’re good at and what you’re not good at, but also being authentic sounds like was a key for the success of your blog, right? People wanted to hear what it was like and they felt like they were getting the real real.
Libby Kranz: Mm-hmm.
Libby Kranz: Right, right, oh, for sure. Even if they didn’t want to, I had a few concerned phone calls sometimes and I just explained this is the deepest darkest moments. This is not my every waking moment thoughts, but these are true, but this is the corners, right?
Dr. Jessica Kriegel: So do you feel like you were, I mean, is this your destiny? Is this why you’re, this is your, why to be the best mom that you can be to create that knowledge everywhere, spread the glitter, so to speak?
Libby Kranz: Yeah, 100% I was destined to be a wife and a mom. And the best way I can take care of all five of my kids, my four surviving and Jennifer, is to share what I have now learned, 100%.
Dr. Jessica Kriegel: Yeah. So tell us what that is, the glitter. What is the thing that people don’t have knowledge of that you want everyone to be able to know?
Libby Kranz: Oh.
So we’ll see if we can share this on a podcast, but I would say that the big organizations don’t do anything for pediatric cancer. They share pictures of kids. They have taglines like sponsoring more birthdays, but they give, you know, American Cancer Society left less than one cent of every donated dollar is allocated towards pediatric cancer research. In fact, when Jennifer was first diagnosed, that was their tagline and they had all these options on their website that you could choose pancreatic cancer, breast cancer, you know, all these different options, but pediatric cancer wasn’t even one of their buckets. And they got enough heat for it that eventually they just took down the bucket option. So you can’t allocate your funds at all. Instead of adding in pediatric cancer, they eliminated the possibility. And then our government, our tax dollars, this is also one of our things that we’re really proud of that just happened this year, is that it was less than 4% of the entire federal research budget was allocated towards pediatrics.
And that number just increased to 8%, which was huge. It’s a huge, it’s an incredible amount of money. It’s a credible amount of opportunity for researchers and for anyone facing a cancer diagnosis. Cause I think the other thing is so logical that once you think about it, you understand it. But you think of someone fighting cancer, you think that they’re bald, that they’re sick, that they’re weak. None of that’s cancer. That’s all the treatment and the limited treatment options.
Dr. Jessica Kriegel: Mmm.
Dr. Jessica Kriegel: Mmm.
Libby Kranz: But we can change that with the right kind of research funded the right kind of way. We can change that. Chemotherapy obviously has been wonderful within cancer research, but it was discovered by a pediatric oncologist. So many breakthroughs for cancer are discovered for pediatrics and it has long reaching effects because childhood cancer is like virgin cancer. It’s not…
Dr. Jessica Kriegel: Hmm.
Libby Kranz: Environmentally caused. Kids aren’t making lifestyle choices that is causing cancer. So it is really cells going crazy at the wrong place at the wrong time is really in a simplistic version. That’s what’s happening. So if you can fix that, you can fix anything, right?
Dr. Jessica Kriegel: Hmm, that’s interesting. Now, what is the justification? I mean, if the American Cancer Society could defend themselves right now, what would they say?
Libby Kranz: I’d like to know. I think they would say, pediatric cancer is rare because kids are rare. That is something I would get hammered pretty hard by the pediatric cancer community for saying that, but we have to be honest and embrace reality. Pediatric cancer, of course, it’s rare. Zero to 18, there’s not that many in a population that lives to the hundreds now, right?
Dr. Jessica Kriegel: Yeah
Libby Kranz: And then there’s so many different types of it. So it is a harder to research and study because pediatric cancer itself, there’s 12 main cancer types. And one of it is brain cancer. Well, Jennifer had brain cancer, but she had a specific type, DIPG. So there’s all these different subsets of categories. So it becomes understandably hard to research. And it’s not, because of that, it’s not profitable for pharmaceutical companies. My guess with American Cancer Society would be it has something to do with profits.
And how many people have it, and then something to do with pharmaceutical companies, which are for-profit companies, so I will never bag on them for not funding it because they are beholden to their stockholders.
Dr. Jessica Kriegel: Yeah.
Dr. Jessica Kriegel: Yeah, I saw something interesting that was on your website about where the funding goes and the inverted triangle and the triangle. Can you speak to that dynamic as well?
Libby Kranz: Mm-hmm.
Libby Kranz: Yeah.
Libby Kranz: So that was something I, we tried to build unravel on what I would call stay at home mom logic, where if it doesn’t work, you know, you change it, you fix it, and a lot of times it’s just spur of the moment decision. You know, you run out of diapers, you shove a t-shirt in there or something, you know, just you make do with what you have, you figure it out, right? And I looked at it like that, that I said, we fund things by clinical trials, we fund things by proven science, we fund things by grants. And I said, my kid’s dying.
Dr. Jessica Kriegel: Yeah
Dr. Jessica Kriegel: Yeah.
Libby Kranz: She has no chance at life. Why are we wasting our time with that? She needs something really new and innovative because what we have, we already know isn’t going to work. So let’s try something new. But grant systems, they spend, researchers spend hundreds of hours writing a very long detailed grant that I think they get less than 10% of what they apply for, of the grants they apply for. And then it restricts them and it ties their hands.
You know, especially when my kids were little, and my husband would go to work and he would come home because I was a stay at home mom, I would jokingly say, I don’t want him walking in the door and telling me how to do this. And like seeing over my shoulder, oh, maybe we should do this differently. Even though they’re both of our kids, I didn’t want to be micromanaged like that, but that’s what we do with scientific research. And it makes no sense to me. We have other great researchers looking over the work and saying, yes, they have to follow it A through Z, even if they find out midway through that it’s not gonna work.
It just doesn’t make sense. Or like, if you think of when you’re a kid learning science, the way we learned science, all of us in elementary school, is you make a hypothesis, you test it, and either you prove yourself correct or you prove yourself incorrect and then you change it. Well, we don’t allow researchers with cancer to do that. They have to have their whole hypothesis and they have to stick to it. Even if they find out halfway through, it doesn’t work. That’s illogical. And so we just said, let’s just not do that.
Let’s just give them money based off of an abstract of what they plan to do and stay in communication.
Dr. Jessica Kriegel: So you’re fundraising, you get this money, you give it, donate it to certain doctors that you feel are pushing the envelope and innovative in pediatric cancer research. And you’re saying, go for it. Do whatever it is that you need to do to discover. It’s like wild, wild west R and D for them essentially. Is that right?
Libby Kranz: Yes.
Libby Kranz: 100%, 100%. And we have a scientist, because again, I’m a stay at home, or I’m a PE teacher turned stay at home mom, science is not my strong suit. So we have a scientific advisory board of researchers from all over the country, both clinicians and both people that are just straight researchers that help us. And they oversee, I mean, it’s a small community. So they usually have, you know, the Kevin Bacon, whatever, six, seven degrees of separation. They usually can find someone that has.
A real direct contact with them, but they can also look over the proposed research and know, hey, someone else is already doing that and they’re further along, or some potential hiccups with it, or most importantly, they usually nominate someone they think is doing great stuff, and then we fund them. We say, go do something great.
Dr. Jessica Kriegel: What has been the biggest obstacle in this journey so far.
Libby Kranz: Um.
I think, well, my grief, because there’s different times that I just get the grief is overwhelming still. And that can be hard when I need to be doing other things for the nonprofit, but I am just trying to keep my head above water and be a good mom and a good daughter and a good sister. And it’s hard to then pour so much of myself into this is a personal, I would say, obstacle, I think.
I think that it’s a new one, it’s a different way to do it. Even when we meet with researchers, they almost always look at us like, there’s gotta be a catch to this. No one just gives money like this. There’s always some kind of restriction. But within giving the money, there’s very few obstacles. And actually I would say that most people, when they hear and they understand it, they go, oh man, that makes a lot of sense. Yeah, I get what you’re doing. So even fundraising within this is not difficult in that regard.
Dr. Jessica Kriegel: Ha ha.
Dr. Jessica Kriegel: So how do you define progress? What success have you had to date? When did Jennifer pass? What year?
Libby Kranz: Almost 10 years. It’ll be 10 years this February.
Dr. Jessica Kriegel: Wow, okay, so it’s been nine-ish, 10-ish years since this organization started. So what have you accomplished that you’re proud of looking back and what’s next?
Libby Kranz: Yeah.
Libby Kranz: Oh man, there’s a lot that we’ve accomplished that I’m proud of. We’ve raised $10 million in 10 years, which as I said, you know, PE teachers from the stay at home mom, I’m proud of that. I’m proud that we’ve done a lot of that through large donations, but so much of it through small donations and grassroots efforts of people giving what they can and through kids doing fundraisers and being involved with what we do. Like I said, I think we played a part in changing the government funding.
From 4% to 8%. One of the biggest, most personal ones for me is when Jennifer was sick, I learned seven kids died every single day from cancer. And I remember once sharing, learning that statistic, and then I said, today’s not that day. Today, she’s not one of the seven. But when she died, I remember even laying with her and saying, this is how I’ll tell people. Seven children died today from cancer, and my daughter was one of them. She gifted me her first and last breath, and so many beautiful ones in between.
And I was with her when I decided that’s how I wanted to tell people, because I wanted to remind people that I was just one of six broken families that day. Um, and we have, uh, changed that number to five. And that is one of my proudest accomplishments. Um, we have a long way to go because now we have two more kids surviving. And like we talked about survival has its own pitfalls. You know, if you’re giving a kid medicsin so toxic, their hair falls out.
What do we think it’s doing to their insides? And we have to do better for our children. Parents of kids that are in diapers when they’re in the middle of treatment have to wear gloves when they change their child’s diaper because it’s too toxic to sit on their skin and potentially get on their skin as they’re changing a diaper. That is asinine to me that we are doing that to our children and we’re not putting more effort into doing better. So we have a long way to go. Survivorship is one of my own biggest
Pushes because I also, my babies will be my babies when they’re six, 16, 36, 56, right? Most people get touched by cancer in their life. And if we can change treatment for kids, we will change treatments for adults if you do the right kind of treatment options, right? The overarching things that can change everything, the landscape for all cancer treatment. And I want that for my kids. I want something better. I want better options. I want survivorship.
Libby Kranz: I don’t want kids to be dying 10 years after cancer treatment because they have a heart attack because it damaged their hearts so much. That’s not acceptable survivorship.
Dr. Jessica Kriegel: Do you get pushback? I mean, have you had people tell you to stop or slow down or do it differently that don’t believe that you’re doing this in the right way or for the right reasons or whatever?
Libby Kranz: Um, I, not a ton. I mean, and maybe I’m too much of a bulldozer to notice that I think losing Jennifer gifted me a lot of things in life and one of it is that I don’t sweat the small stuff. So get on board or get out. Like I don’t really care that much, you know? And if this isn’t the right cause for you or the right thing for you, that’s all right. But keep it rolling, cause it is for us. And so.
Dr. Jessica Kriegel: Mm-hmm.
Dr. Jessica Kriegel: Yeah.
Libby Kranz: I’m sure it has been, but I think I just am too bullheaded to maybe notice.
Dr. Jessica Kriegel: And how are your children doing?
Libby Kranz: Um, they’re great. I mean, they, we go to DC when we can and they get to advocate there. Um, I really credit them as being a big piece of change in the statistics about the funding from the government because they went and they shared their story. Um, which is very different and personal. One of my daughters was born after Jennifer died. Um, and she’s come to terms with that. She’s now outgrown her oldest sister. Um, and that’s.
Dr. Jessica Kriegel: Mm.
Libby Kranz: Hard for these kids to go through. My son that shared a room with Jennifer and was so close to her, he grew out his hair longer than my hair and kept it that way for several years. He was gonna grow it out, cut it, but I think it was his connection to her. And a year ago, he cut it and was able to fundraise with it and raise $12,000 through doing that. So they all have their little pieces within it. And I have one that for the first time ever, just a few months ago, heard me speak. He was never able to do it. And he’s my stoical guy.
And he cried and it hit him, but he went and took a break in a minute. But they all have their own piece of this and they are active. And like I said, some of them are very open about it. One of my sons wears an Unravel shirt everywhere he goes because he’s in theater and every audition he wears an Unravel shirt, something to have, I think maybe a piece of his sister or it gives them, we can do hard things kind of confidence. And the other boy…
doesn’t ever talk about it, doesn’t show it. Probably if you asked how many sisters he had, he would not include her, but he wants me to say it, like kind of say it for him. So I try really hard to respect their own journeys while teaching them to respect my journey.
Dr. Jessica Kriegel: How has your community grown in this journey? I saw there are many other children that it seems like they’ve become part of your why as well. So do you also have a support network of I would imagine families that have gone through similar things or that part of your mission?
Libby Kranz: Mm-hmm.
Libby Kranz: We do. We have a chapter in Iowa run by an incredible mom and an incredible husband too is such a big part of it, but they lost their only daughter, Elena. And Elena, I think everything I do always leads back to a selfish part for me, but before I knew Elena even had cancer, she did our fluttering campaign, which is something kids can be really active with. And I just kind of fell in love with her on the screen.
And then her mom shared that she relapsed. And I had no idea that she’d been fought cancer. And she battled and she fought relapse after relapse until we finally lost her. But I love that little girl that I never even got to meet in person. And like genuinely and truly care so deeply for her. And it allowed me to believe that when people said they cared about my daughter, it was the truth. Cause before Elena, I think I always just thought sure, yep, you love Jennifer, you really care.
Dr. Jessica Kriegel: Mm.
Libby Kranz: And I couldn’t understand how you could care about someone you didn’t know until Elena. And that’s one of our most personal stories, especially because she’s become such a integral part of our organization. So, but yeah, so many families we fall in love with and get to know these kids, and my kids get to know their siblings. It’s a huge piece of what I do now because Jennifer’s diagnosis was terrible.
But we had the gift of knowledge. We knew she would die or likely die. Of course there’s always hope, but we knew. So many of these other families go through years of trying and hoping and struggling, and they could still die. And that’s, I think we were gifted something with that. And that’s why survivorship and changing treatment is so big for me, because it’s so much more than just kids living or dying from cancer, which that was another kind of, although it sounds ridiculous now to me, I think I just kind of thought they lived or they died.
You know, I saw the bald smiling kids next to Jennifer Aniston or whatever those commercials were and I kind of fell for that, that was the face of cancer, right? What a terrible story. But there’s so much in between that we don’t know about and the in between is what needs the most work.
Dr. Jessica Kriegel: Mm.
Dr. Jessica Kriegel: Yeah, so asking about the in-between, and you can tell me if you don’t wanna answer, this isn’t an appropriate question, but did Jennifer know that she was terminal? Did you have conversations with her about that?
Libby Kranz: I don’t know. I don’t, we didn’t have, so it started off by saying you have a mass in your head and then we turned it to a tumor and then we turned it to cancer, right? So we talked through things as it came. She must’ve known, I think she knew before we knew. I remember because my personality is strong, we were supposed to have, she had her scan after treatment.
Dr. Jessica Kriegel: Mm.
Libby Kranz: And we were supposed to have our appointment afterwards after she was seen before the tumor board. And I told her, doctor, I’m not waiting an additional four days. You’re gonna call me and tell me, or I will find your address and come to your house. And I think she kind of believed me that I would probably do that and I very well may have. So she called and I remember we had friends over and I stepped outside to take the call and she said, Libby, it’s bad, it’s progressed, it’s everywhere. You know, basically down her spine, front of her brain, everywhere. And I came back in and Jennifer was different. It was like, oh, you know.
You know, and she never ate again after that. I think she barely drank anything again after that. I think she just knew that we knew, she just settled into it. And I would ask her questions, you know, to try and prepare her, and how do you prepare a barely six-year-old, but trying to prepare her, and I would ask her what she thought heaven was like. What does it look like? What does it smell like? And she would never answer. And then one day she looked up at me and said,
I think heaven smells like watermelon all the time. So I think that was her gift of giving to me to saying it’s gonna be okay. And when you see watermelon or smell watermelon, mom, that’s me, you know? So yeah, I think she knew. I had my own personal things I said to her at the end to tell her to go. But I think she knew.
But we never talked about it. And I don’t know, I still look back and wonder, was that the right thing or the wrong thing to never have really explicitly talked about it? And that’s, maybe that’s all parenting ever is, is questioning if you did the right thing yesterday, but I just live in that question for the rest of my life because I don’t get any do-overs with it. So, but.
Dr. Jessica Kriegel: Hehehehe
Dr. Jessica Kriegel: Yeah. She was born in Sacramento. What hospital was she born in? OK. My daughter was also born in Sacramento. And my daughter is six years old. So I was just so touched by this story. Because I imagine most people that hear your story see themselves in it, right? I mean, they see the possibility of.
Libby Kranz: UC Davis.
Libby Kranz: Yeah.
Libby Kranz: Mm-hmm.
Dr. Jessica Kriegel: What that would be like for them, or they’re just having empathy for your experience if they don’t have children. And it’s just so, it is the unimaginable, many times by choice, I would guess, right? So do you have an end goal? Is there something that you will feel like you’re done? Or is this just the journey now that you’re on that you’ll keep being on and it’ll…
Libby Kranz: Yeah.
Dr. Jessica Kriegel: Evolve.
Libby Kranz: I mean, my tagline at the end of my blog that is probably not the truth is until there’s a cure, because I think if we’re logical, we know we’ll never cure cancer. But I think I have a couple. I think DIPG with what Jennifer had, I think if I can give those doctors a chance to go in a room and say, well, it’s not good, but we have some options would be phenomenal, would feel like a personal victory. And I think we’re on the road to that. I think.
I think we’ll see that within my lifetime. And I think a huge increase of survivorship of that particular cancer type will happen within my children’s lifetime. I think if I continue to have people say that my stories touch them, and maybe my blog has helped, my favorite stories are the ones where maybe their parents lost a child, and they grew up in that grief and never understood their parents, but they read my blog and they went, oh, now I understand what my mom felt. Now I get it.
Um, that’s one of the greatest, those are the greatest messages I ever get actually. Um, but yeah, I think, I think it’ll be a fun rabble outlast me because if it lives on, if what we’re doing, I know we’re doing it the right way. I think if other organizations pick up the unrestricted funding model, that would be a feather in my cap. Um, I think that, um, you know, this is, this is our legacy. Um, and however that ends up being.
It’ll be, but I think this is my, the rest of my life’s journey because I was given a gift of communication skills and a loud voice and I intend to use it.
Dr. Jessica Kriegel: And so your husband is involved in this organization as well, right?
Libby Kranz: Yeah. When Jennifer was sick, it was called love for JLK. It was like a hashtag one of our friends came up with. And when we went through naming the organization, we decided not to do that because I knew myself well enough to know that if I said, will you donate or help out with love for JLK? And they said, no, I couldn’t deal with that. I would probably react very viscerally and not well.
But if it’s basically no, no unravel, I have lots of follow-up questions. Well, is it the time? Can we spread out the donation? Like I don’t, it’s not a personal affront to me, right? I can, you know, schmooze the situation out. And we did it that way for my husband because it was too much for him. He served on the board of directors when we first started around our kitchen table. And he most of the time would leave the room. He just couldn’t do it for years. And then eventually he was able to kind of start helping with our golf tournament that my dad ran more and more.
And then, oh man, I think it was about a year and a half ago, he made the jump, he left his job, and he came to work full-time for the organization. But it took years, and I knew that I wanted Unraveled to be a home for other families that weren’t as lucky as we were, to get the attention, the financial support. You know, we’re a blue-collar family, we couldn’t have started this organization if people hadn’t donated money actually to our family to help us get in a trial in New York that we were never able to go on. But we used that, that was the seed money to start our nonprofit.
And not everyone’s as lucky as that. Not everyone is lucky enough to stay home and have the time or the support to blog and write and share the way I did, right? So we wanted it to be a home for other people.
Dr. Jessica Kriegel: And so you’re building a team now and you have employees and a huge network of volunteers and you’ve got these research partners. How do you describe the culture of this organization you’ve built?
Libby Kranz: Yes.
Libby Kranz: Yeah, I think it all goes back to that idea of honesty. We are all close friends and honest friends with each other. And we’ll say if someone fumbled on something and what went well and what didn’t, I think we have a culture of taking risks, but it’s okay to make a mistake as long as we learn from it. That is how we fund research and that’s how we run our day-to-day operations. Cause none of us went to school to run a nonprofit. You know, all of us came to this by happenstance.
That are part of the organization. So we have to make mistakes to learn, but it’s kind of nice, I think, making mistakes, because then that means you’re doing something really different if you’re trying something new. And I think we have a common purpose. It really is nice that we’ve got the centralized focus purpose to unravel cancer.
Dr. Jessica Kriegel: You a question about the nonprofit world because I’ve been on a lot of boards myself and I’ve done a lot of pro bono work with nonprofits and I think the number one challenge that most nonprofit leaders come across is a reluctance of their team to ask for money.
The awkwardness that comes from asking for money. And you’ve described yourself as a steamroller. I’ve said that before. My leadership style is steamroll, you know, sometimes. So I feel like that. I see myself in you in that way. But you don’t want a steamroll when you’re asking someone for money. There’s an awkwardness about talking about money generally in America, certainly. And so how do you overcome it and how do you coach your team to overcome that?
Libby Kranz: I think a lot of it for us is it’s an invitation and an opportunity to be part of something big. And I think we leave the door open. I actually don’t feel like I directly myself ask for money, nor does our team a lot. I think it’s an invitation to join us in whatever capacity you have. It’s your talent, you know, donate your time, donate your treasure, that’s your money. You know, we could take donations in so many ways and people.
We had a big long mission when we first started as trying to hone it down. And one of the lines, and it was good people want to do good things. They just need help getting started. And I really believe that I believe that when people hear about how we fund, what we fund, and even now the results that we’re getting with our funding, they want to help. So the ask is not hard once you share.
Dr. Jessica Kriegel: Yeah, and it sounds like also if you believe in it. I mean, you have such strong belief in this that it’s viewed in your mind not as a request, but rather as an invitation for you to walk through a door to join this thing that is so critical, right? And I mean, I think of that with sales teams. We have worked with sales teams before on their culture and there’s a reluctance to.
Libby Kranz: Yes.
Dr. Jessica Kriegel: To ask for too much from clients, right? But then there’s other salespeople who are wildly successful at our clients who see it more as an opportunity that we’re giving this client to engage in this product that they believe in. You know, there’s a parallel there. You’re giving people an opportunity rather than asking for a favor.
Libby Kranz: And it’s terrifying. I hate it still. I mean, it’s my least favorite thing is asking. And that’s why I like it events. I get to talk and then hand the mic over to someone else that says now who wants to help. But most people do, you know, most people really, they want to help. I hope I know, I know how we fund research is the right way to do it. And I think most people can see the logic in it really plain and simple. They can see that we have to disrupt.
Dr. Jessica Kriegel: Well.
Libby Kranz: The way we’re doing this, because what we’re doing is not working. For pediatric cancer, for adult cancers, for anybody, it’s just not working. And anyone that’s been touched by cancer diagnosis knows that.
Dr. Jessica Kriegel: When what you’re doing is so much more powerful than trying to find a cure, and it’s so much more powerful than trying to help families that might go through something similar, you’re disrupting an entire system because you see that the system is broken. And I think that resonates with people across many different systems that they’re seeing right now, the foundation of what we’ve built and the norms within which we operate in and of themselves are not functioning. And so what happens when you blow it up?
Libby Kranz: Right? COVID gave us that. COVID showed us that if we fund the right way and really push the pedal, we can get things accomplished very quickly, even in the medical community that is typically bureaucracy and a lot of red tape. But if we eliminate a lot of that red tape due to a need and a crucial and time-critical need, we can move the needle very quickly. And that really is our goal.
Dr. Jessica Kriegel: So if you could say something, words of wisdom or comfort to a family that is going, let’s say that today they realize they’re about to go through the same thing that you went through, what would you offer them?
Libby Kranz: Mm-hmm. A lot of swear words. I mean, really, I think that’s the first thing is that people need to know it’s okay to be angry and it’s okay to question everything. It’s okay to rage. I think I would tell them, the first thing I say is insulate yourself. I’ll point people to absorb the well-meaning intentions. I think I would say anything you want and feel is okay. And I would say…
Dr. Jessica Kriegel: Ha ha!
Libby Kranz: Take care of yourself physically. I think that movement exercise was crucial for me. Writing and being honest about it was crucial for me. Yeah, and I think just there is no right or wrong. You just gotta step forward and jump into it and know that there are those of us working tirelessly to try and help you out, but all you gotta do right now is just live. It’s hard, because I do, one of our very close friends that was I do say, don’t just be sorry, be active. Meaning the first thing everyone ever says is, oh my gosh, I’m so sorry. And my response always is, I am too, but we do something about it. And one of my friends ran a fundraiser in the Midwest for us and then his daughter was diagnosed with a very, very similar cancer. And the one thing I remind them is that they should remember they were active before she needed them to be. And if there’s nothing else, they can always remember.
Dr. Jessica Kriegel: Hmm.
Libby Kranz: Is that they didn’t wait, because I waited. I made small donations and patted myself on the back, but I didn’t really jump in. And I wouldn’t have if my hand hadn’t been forced. I was not that person. I was too scared. It was too close. Actually, if I was going to talk about a hurdle with pediatric cancer research, I think it’s that. I think it’s too scary for people. I think it is too close to home. If you think of funding something in another country, you feel insulated and protected from it. But there’s something about pediatric cancer that maybe viscerally we know is close and it could touch us. And I think it scares people a lot. It scared me. I would, even the bald smiling kids on TV that were happy and seemingly doing well, it scared the hell out of me. And I changed the station. So maybe people like me are the biggest hurdle.
Dr. Jessica Kriegel: Hmm, yeah, I can relate to that. I mean, I spent a lifetime trying to avoid feeling anything bad, you know, and that led to an addiction that I had to overcome that now I’m in recovery from, and I can actually feel things for the first time in my adult life, and I don’t like it, you know? I mean, it’s hard. It’s been, you know, I’ve been holding back tears this entire conversation just because it is something of such magnitude that isn’t comfortable.
Libby Kranz: Yeah.
Dr. Jessica Kriegel: And you live in that discomfort. Yeah.
Libby Kranz: And we can’t protect ourselves from us. Yeah. And people see me, so it’s funny, I’ll meet people and they’ll ask how many kids I have and I tell them and I can see right away if they’re gonna be able to deal with it. Cause usually then they fall up, oh my gosh, five kids, well how old are they all? And I’ll say, well we lost our oldest when she was six and then I go down the line and I can see there’s an immediate turnoff for people when they feel like this is, nope, can’t, or people that can handle it.
Or even recently I thought I met people who they knew our story back then. And I can see the light bulb go off as it like clicks to their head. But they’re like, wait a minute, wait a minute. I read that story. I cried every night or my blog would publish in the middle of the night. They’d wake up every morning before their Starbucks and read my story and cry with and for me as they lived that journey with me. And I can see it within people. I think that’s the thing is that it hits close to home. It’s really, it’s scary because it can happen.
You know, classrooms of kids, I can’t pull the number right now. It’s 46 or 36 kids a day are diagnosed with pediatric cancer. It’s a large, large number. I think worldwide it’s like every three minutes a child is diagnosed with cancer. And death rate, it kills, it’s the number one death by disease killer of our nation’s kids. I mean, it is terrifying when you find out. And I think…
Dr. Jessica Kriegel: Mm.
Libby Kranz: Parenthood is scary enough sometimes that people can’t take on another worry and fear, especially one that the only insulation from it, the only production we can give our kids is better treatment options. That’s it. One day I hope when we fund some prevention, we fund some research for earlier diagnosis, you know, like screening methods, but we’re a long way away from that. Right now what we can fund is better treatment options if you do hear those words, your child has cancer. And that’s…
Dr. Jessica Kriegel: Yeah.
Libby Kranz: Terrifying. It’s much easier to look at car seat safety and things like that, that we can improve and keep our kids safer than they were 20 years ago. That’s, that’s easier and somehow less scary, I think.
Dr. Jessica Kriegel: So what is, in your opinion, because I know everyone’s different, the best reaction that you’ve seen from people when you tell them we lost our daughter when she was six? I mean, what works and what doesn’t work is someone who may encounter someone in that situation.
Libby Kranz: Just be genuine. It’s okay to say, I don’t know what to say. It’s okay to say, can I give you a hug? It’s okay to cry or not cry or be like, oh, I don’t even know, this is awkward for me. Or I had no idea. Anything’s okay as long as it’s genuine. I have had one or two incidences that people have ever upset me. And it was because it was just disingenuine.
You know, there’s no right or wrong. And the truth is what works for me doesn’t work for my husband, right? It’s such an individualized journey. So I think, but err on the side of saying something. I guess that would be my advice. Err on the side of making a fool out of yourself and saying, quote, the wrong thing. Because the only thing that’s hard is the total rejection. But again, you’re either with me or you’re not. And I’m not, there’s enough people with me that it doesn’t. I guess.
Dr. Jessica Kriegel: Yeah.
Libby Kranz: When you lose a kid, like it is one of the worst things I think you can go through in this life. I’ve seen some real darkness the world can give. So I see the good so much clearer than I ever did. It is, if I depict the best gift that child loss gave me, it is that. It is that I see color so much richer and brighter now than I ever did before.
Dr. Jessica Kriegel: Hmm, that’s beautiful. So my last question for you is what’s one question that no one ever really asks you that you wish more people would?
Libby Kranz: Um, that is a hard one. Um.
If you ask my husband, I think his thing would actually be, does it get me easier? Because he thinks that that’s a bold question and people are too scared to ask people like us bold questions. And my answer would be yes and no. The day to day somehow gets, you get more adjusted to it, but the milestones are a lot harder. But I think.
Dr. Jessica Kriegel: Mm.
Libby Kranz: I think a question I never get asked, I feel like I get asked a lot of the questions that I want to be made because I just throw them out there. But maybe it would be, is there anything you regret? Because that’s the biggest lesson I can, that’s the biggest piece that I can impart to people is like, don’t wait. We all know those things of like, hug your kids while you have them, don’t wait, embrace the hard years. But that all makes people feel like, that’s hard and that’s guilty. But I would say,
Dr. Jessica Kriegel: Hmm.
Libby Kranz: You know, don’t wait to invest in what you care about. I wish I had been active in the fight against pediatric cancer. That is the one thing I will always say sorry to my daughter for because I waited. And I will always have regret for that, but I let my fear stop me from knowing the truth.
Dr. Jessica Kriegel: You know, I have to just say from the outside looking in…
Dr. Jessica Kriegel: I mean, before it touched your life, you could have made that argument for a million different things, right? I mean, Jennifer could have been taken by a drunk driver, and then would you be beating yourself up for not being active in the drunk driving, the fight against drunk drivers, you know? I mean, it feels, I just wanna say to you, it feels like you’re just beating yourself up in a way that isn’t owed to the universe, you know? Because…
Libby Kranz: Mm-hmm.
Dr. Jessica Kriegel: I could make an argument for thousands of causes that one should be involved in. And until it gets personal, you wouldn’t have had the power to do the things you’ve done and the impact you’ve made. So maybe I’m speaking out of turn here, but I almost want to be like, no, don’t have that be a regret. Ha ha ha.
Libby Kranz: You know, if I take that regret and I do something good with it, I’m okay. And sometimes I think the guilt and the grief is still my connection. But the reason, I think the difference with this is that actually, and I’m not a mathematician, I can barely add, but, and so don’t worry, I never count the donations or anything, they don’t let me near the books for Unravel. But statistically, it’s way more likely than any of those things cancer is. That’s.
Dr. Jessica Kriegel: Yeah
Dr. Jessica Kriegel: Hahaha
Dr. Jessica Kriegel: Yeah.
Libby Kranz: That’s the piece of it that makes this, because I’ve had now friends, I have all kinds of friends of all kinds of child loss and it’s all horrific. None of it’s easy. I had the gift of knowledge. So in some ways I think I had it easier than so many of my friends that was either sudden or a long cancer battle. I had it easier. But statistically, it’s really high. For something for your child to go through, pediatric cancer, it’s…
Dr. Jessica Kriegel: Mm.
Libby Kranz: Number one on the list for diseases by a large margin. And you know, the only thing that kills more kids is accidents and that’s such a broad topic. And we’re consistently doing a wonderful job, I think, not good enough, but finding ways to protect our kids from accidents. But I think, yeah, this disease one is a hard one. But I agree with you, I’m sure it’s too hard on myself, but that’s the way I’m put together. So one day.
Dr. Jessica Kriegel: Right.
Dr. Jessica Kriegel: It’s one of your superpowers too, right? Well, thank you so much for taking the time to chat with me about this. I so appreciate hearing your story and the work that you’re doing on behalf of my daughter and all the other children out there. Thank you for fighting the good fight.
Libby Kranz: Yeah.
Libby Kranz: Yeah, thank you for letting me share Jennifer with so many people and just choosing to care.
Dr. Jessica Kriegel: And that’s it. Thank you Libby. Oh my goodness.
Libby Kranz: Yeah, thanks.
