Talk about the elephant

Lauren shared what it was like to follow her daughter Melissa's lead in having open conversations about end-of-life wishes, which gave Lauren a path forward during grief and led to the founding of 13 Thirty Cancer Connect to support thousands of AYA cancer patients in her community.

Find out more about 13 Thirty Cancer Connect's programs that are now available virtually and locally in Rochester NY and Syracuse NY. 

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Thank you for listening!

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My reflections on the conversation:

I thought a lot about what Melissa’s brother said during his graduation speech to his 400 classmates 20 years ago - that Melissa’s life was not taken away, but that it was just shorter than most. I’m astounded by how much is packed in that one simple sentence in the mind of a 16-year-old. There was a sense of defiance, meaning - don’t pity my sister. But there was also this profound wisdom about - it’s not how long you live that matters, but what you do with the time you were given. I know that losing my dad helped me better appreciate the finality of my own life and has given me focus and gratitude that I probably would not otherwise have if I didn’t go through that painful experience with him. 

I’m also keenly aware, however, that insights like this are often luxury in a sense. It’s a perspective that’s easier to hold when you can put the adversity behind you. For those in the thick of things, it may not be so easy. But that’s also what’s really incredible about Melissa, is that she had that clarity while facing her imminent death. 

Transcript

SPEAKER_01: 0:03

Hey everybody, this is Serena, your host for the Talk About Cancer Podcast, where I talk to cancer patients, survivors, and caregivers about their experiences dealing with cancer. We're all given treatment plans when cancer shows up in our lives, but no one gives us plans for navigating the hard conversations we need to have and the relationship challenges that will inevitably come up. This podcast is meant to help fill that gap for those dealing with cancer. I think of it as an on-demand audio support group where listeners can hear about others' experiences managing similar problems, but most importantly, get insights about how our loved ones are feeling on this journey, none of us signed up for, and better understand where they may be needing support. In today's episode, Lauren shared what it was like to follow her daughter's lead in getting through Melissa's end of life and how having had open conversations about Melissa's wishes gave Lauren a path forward during grief and led to the founding of a nonprofit to support thousands of AYA cancer patients in our community. Let's dive into her story now, and I will check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.

SPEAKER_00: 1:37

Thanks, Serena, and thanks for taking the time to talk with me today. For your listeners, my name is Lauren Spiker, and I am the founder and director of a nonprofit located in Rochester, New York, called 1330 Cancer Connect. And it's the organization that I started 21 years ago after our 19-year-old daughter Melissa died. And our primary uh mission is to support teens like Melissa, teens and young adults with cancer through every stage of their cancer experience.

SPEAKER_01: 2:11

Thank you for that intro. Take us back to 21 years ago. Wow. What was that like when that was first discovered that Melissa had cancer?

SPEAKER_00: 2:22

Actually, it was, if I think back, it was 23 years ago when she was first diagnosed as a senior in high school, 17-year-old who had just been accepted to at Ivy Lake University. That was her dream. Her future, like so many others like her, was just beginning to unfold. And then cancer changed everything. And unfortunately, in Melissa's case, her primary diagnosis, which was a very rare bone marrow malignancy called myelodysplasia, never had a very good prognosis. So there was always this nagging fear, despite, you know, every hope that every parent fosters, that she would be the small statistic of people that did make it. So the initial shock was, oh my gosh, what did I do wrong? I guess I have to say that that was my first question. What did I miss? Why didn't I give her more vitamins or something? You know, like every parent asks. But then as the two years unfolded, and after her first relapse brought her to bone marrow transplant, which had its own new fears. And then after a second relapse, when we knew we had exhausted all treatment options, that's when the reality really set in, that our worst fears, in fact, were being realized. And at that point, together with Melissa, we made plans for how she wanted to die, but more importantly, how she wanted to live the rest of the life that she had left. And that is something that was life-transforming for me, as you might imagine. How did you know how to talk to your daughter about topics like that?

SPEAKER_01: 4:10

And I I asked because I had the reverse experience. And I didn't know how to talk to my dad about facing his own mortality. I mean, we talked about some things about more practical things like what are your wishes around the property that you had, but in terms of facing his mortality, that was something that I did not know how to do. So can you share how all of you figured out how to do that together as a family?

SPEAKER_00: 4:42

Well, I think the the most important thing that helped me figure out how to have those conversations was following Melissa's lead. And even if I take my mother's hat off, I can tell you, Serena, Melissa was a pretty extraordinary kid. She she somehow had this incredible sense of herself and what she needed and what was good for her. I will tell you, as a three-year-old, a very stubborn three-year-old, that was very frustrating that she always knew her mind. But as she faced her own death, it became just her greatest strength, knowing what she needed to do and how she needed to do it for herself. And I guess I'll share one earlier experience that that maybe gave me some sense of how to help her die well. And this was a year before she died, actually. I think I said in my intro, Melissa, went through bone marrow transplant after her first relapse. And we did not have a very closely matched donor. So the expectations of the success of her transplant were very slim. But somehow Melissa just whizzed through that whole transplant process. And in three short weeks, we were on our way home, which astounded everybody. And I remember she and I talked, it was the night before we were discharged from the bone marrow transplant unit. And I said, holy cow, I said, you've just done such a great job getting through this really terrible couple of weeks. Oh, well, I guess I would preface that by saying, you know, she had an exercise bike in her room because she just insisted on staying fit, just as an example.

SPEAKER_01: 6:27

How did you even get that in there?

SPEAKER_00: 6:28

There was such a great physical therapist. And Melissa said, you know, I hate just sitting here and the physical therapist said, You want me to bring in a bike? And Melissa said, sure. So it was the night before discharge from the bone marrow unit. And I said, Gosh, you know, you just done such a great job getting through this. And she said, I only did what I had to do. And I said, You did what you had to do better than most. And then it was what she said next that led us eventually to the conversation none of us want to have. She said, Maybe I just know what I need to do better than most. And I thought, okay, I get it. You know, she, this is that stubborn three-year-old coming out who just always knew what was right for her. So when it came time to face the end of her life after her second relapse, she was offered some palliative chemotherapy that may have extended her life a little bit. There were no guarantees, but her very compassionate healthcare team did offer that to her. And Melissa was very clear. She said no to that. And very clearly she said to us, I just don't want to die sick, she said. And she knew how chemotherapy would be so debilitating because she'd just been through two years of it. So she she led the way. And at that point, Melissa had deferred going to college for two Septembers. And following her very successful experience with the bone marrow transplant by January of that year. So it was January of 2000. We thought, wow, she's got this licked. And we were all set to go to school. She was set to go to the University of Pennsylvania in Philadelphia, and we were ready to go. It was five days before we were going to leave to finally get to the school of her dreams and what was supposed to be a final biopsy showed us that in fact she had relapsed again. And at that point, as I said just a little bit ago, she said no to any continued chemotherapy. But she said, But I do want to go to school anyway. And her docs very compassionately tried to urge her not to go. I remember her primary doc saying, you could get so sick so fast that maybe you won't even be able to come home. And maybe he said you could stay a week or two because her disease was so aggressive again at this point. And Melissa just very clearly said, Well, that would have been a week or two I wouldn't have had otherwise. So off we went to Philadelphia. Melissa moved into her dorm. My husband and I took turns staying at the local Ronald McDonald house. So one of us was there in case she needed us. And in fact, she stayed eight weeks. And um, for almost eight weeks, she was a normal college kid, except for the fact that she was dying. But when we came home, because she did develop an infection and we had to come home, but she had already sort of set the pace for us to follow her lead, that we all knew she was going to die. She knew she was going to die. But until she did, she was just darn set on living as best she could and to do as many things as she could do. So back to your original question about how did I how did I know how to have those conversations with her? Uh I just followed her lead. And when we did come home, we actually had three uh perfectly glorious months until she died, during which she was in many ways healthier than she had been for the last two years. And during that time, we were able to talk with Melissa about what she wanted us to do before and after she died. I could tell you, oh, just so many different things that we did together that prepared us for, or at least allowed us to have no regrets after Melissa died. So the short answer to your question, how did we know how to do that? We just listened to her. And when we started down this road of cancer, I did make her a promise very early on that I would always be honest with her, that I would always tell her the truth as I knew it to be. Because when our teenagers are treated in the pediatric medical uh setting, sometimes physicians forget to include patients in those very important decisions. Um, sometimes physicians want to make decisions with parents. We were always very clear that Melissa would be part of every important decision that impacted her. And I promised her right from the beginning that I would never lie to her.

SPEAKER_01: 11:32

Yeah.

SPEAKER_00: 11:32

So that continued until the night she died.

SPEAKER_01: 11:36

It's amazing to hear someone who's just so clear-eyed about what's happening, accepting the situation and making the decisions that she needed to make.

SPEAKER_00: 11:51

I don't want to confuse her clarity with her liking it very much. She didn't like it very much. She much very much would have preferred that things were different. Right. But, you know, it's just one important example. Once we came back home and she had already made the decision to not go through more treatment, she made what I thought was an extremely mature decision to donate her body through the anatomical gift program at our local university hospital where she had been treated. And I remember the day she said to her, her doc, what do I have to do to do this? And I remember the look on his face, which was, I don't really know, he said, because he'd never had a pediatric patient ask him that before. So we went through that process and she was very clear what was involved. And part of that, uh, I don't know if if you or your listeners know this, but they told us very clearly that it could be up to two years before we got Melissa's ashes back. Which, to be honest, was something I had to wrap my head around for a while there. Um, but that was for choice. So we did everything we had to do. Had one day, this was probably maybe a month before Melissa died. She and I were outside in our what at the time was our very weedy side lawn. And out of blue, she said, Do you think you're ever gonna move? And I said, No. I said, I don't think so. Why? Just wondering, she said. And that was the end of that conversation until a few days later. We were back outside on a really beautiful spring day again, and she said, Have you thought about what you're gonna do with my ashes when you get them back? Now, to be honest, that was not a question I was expecting to be asked. But the truth was I had thought about it. And I said to her, Yeah, we had thought about it. We had just taken a really wonderful last family vacation out to the Grand Canyon. And I said to her, I thought maybe we would all go back to the Grand Canyon again. And you know, we had such a wonderful time there with your brothers and and all of us. And I said, I thought maybe we would just spread you over the expanse. But she looked at me and she said, I don't think that's such a good idea. I said, Really? I I I she had made it very clear to me prior to this that she thought cemeteries were very lowly places, so I knew that wasn't an option. So we said, How come? She said, Remember the day we were there? She said it was really cold. It was cold and it was very windy. And she said, it would just be so gross if the day was windy again when you were out there and I blew all back on you. Oh gosh. We just laughed our silly heads off. And if anybody had ever said to me, I would be laughing about my daughter's ashes blowing back in my face, I would have, of course, never believed it. But here we were, yeah, laughing about it. Right. And then I said, So do you have a better idea? And she said, How about the garden? So that's where she is at our former Weedy Side Lawn. Um, if you were here in in Rochester, I would love to walk you through Melissa's garden that has turned into this, what we think is just a really beautiful holy space. So, yet another example about how Melissa helped lead the way for us to tell us what she wanted. And I guess for me to be um open enough, and I would say loving enough to listen to her and to put that in place because that's what she wanted. And, you know, that helped her, I'm sure, die, knowing that that was just one thing, one one little thing she had to take care of, amongst so many others I could talk about. But I think most importantly, and this is what I try to tell parents all the time, I didn't have to wonder after Melissa died, what do we do? Where do we place her? I didn't have to have the conversation with my sons about, you know, how do you feel about this or what should we do? Because we knew what Melissa wanted.

SPEAKER_01: 16:18

Yeah, it's always such a gift to know. And Melissa was amazing being at her age. I think taking the lead in that way, that's what made it really extraordinary.

SPEAKER_00: 16:31

It really did. And, you know, if the proverbial elephant in the room, you know, that we all tiptoe around, another piece of my professional career. Um, I did a lot of work with leadership teams in nursing homes and elder care, um, not to mention my own very loving or loved elders. It's hard to have those conversations with our frail elders. And it is next to impossible for some to even consider having those conversations with your children because that's just not the way we think it's going to be. But once you do, once you start chipping away, you know, at that elephant in the room one small bite at a time, you don't have to keep coming back to it. It just takes up much less room in that space. And you can then fill that space with other wonderful things. And that's what we learned how to do with Melissa. We had those conversations. I knew what she wanted. And the list, like I said, goes on and on. But once we had those very difficult talks, that conversation just got tucked away. We didn't have to keep going back to it. You know, we didn't have to talk every day about the fact that she was dying. Instead, we could just talk about what to do that day. Melissa, as an example, was able to go to school for eight weeks and live a bit of her dream. And uh when we finally did come home, uh, you know, she planted an herb garden and she took a pottery class and made wonderful small pieces of pottery that she threw clay on a wheel that she left for all of us. And those were the things that she was able to focus on. And it was the things that that we were able to share with her instead of tiptoeing around the conversation nobody ever wants to have. And that is that was the blessing, as you just said. It was a gift for us. Mm-hmm.

SPEAKER_01: 18:33

How did you as the parent, I mean, I I know that she's she gave a lot of space for you all to really focus on the present, but it was still hard for you as a mother. How did you balance those emotions you had? Did you try to keep them from her?

SPEAKER_00: 18:53

Well, um, I guess to be honest, I thought I was keeping some of it from her. It wasn't until after Melissa died, and I read all the journals she kept that she did at one point comment about hearing me cry in the shower. So, of course, it was impossible to imagine my daughter dying. Um, of course, it was hard and it was the most gut-wrenching time I I can even imagine. But one thing that that I guess did help me uh balance, I guess, is a good word, as you said. But I firmly believe, and I guess I always have from somewhere, I don't know where it came from, but I guess I've always believed that life really does happen with purpose. That's not to say that there's this hard, fast plan, I guess, but I believe that there's purpose in our lives and that if we can somehow assign some purpose or try to find some meaningful purpose in the things that life throws our way that somehow that helps reconcile it. So I I know that belief did make some sense to me once I knew Melissa was gonna die, but it certainly made um even more sense after she died. And I tried to figure out what's life without my daughter now. You know, how does how do you somehow make room for the the grief and the hole in your heart that never goes away? But what I'm doing now at the organization I lead certainly was a big piece of that and continues to be. Talk about that. The hole that never goes away. What does that mean to you? There's lots of pithy sayings that we offer people who are grieving. You know, we say things like, time heals all wounds. Biggest fallacy in the world, not true. You were lucky to have her for all those years. Yes, that's true, but I would have liked her for a whole lot more. I even had one person who was meaning well say to me, Well, thank goodness you have three other children, as if that somehow would fill the void in my heart. So the the pain, the hole in your heart never goes away. In fact, I would say that in many ways, as every day goes by and as every year goes by, that she's not here to live the life that I would have planned for her and to share the things that I want to share with her. Every day that goes by without those experiences, in many ways, carves that hole even a little deeper in your heart. You know, it doesn't, the hole never closes up. In fact, it gets bigger as the years go by. But so does your capacity. That's how I kind of balance it with every thought I have of missing Relissa. I think of what is good in my life right now? What did I learn from her? What how am I better now? Because my daughter lived. And, you know, literally thousands of other teens and young adults like her have benefited from the support we provide now because my daughter lived. So while that hole continues to be painful, my capacity to hold more seems to get bigger and bigger to keep space with it. I always liken it somehow to a to a hole of metaphor I use. You know, if I can keep building up the positive things in my life and the things for which I am grateful at a rate faster than the hole in my heart continues to get dug, then at least I can stay afloat. And that's how I see it. Yeah. So I guess that's how it balances out. And the reason that I'm even doing what I'm doing now with my organization is because again, it was something that Melissa kind of challenged me with, which is um, I don't know if it's the final chapter in her life, but it's certainly the piece of her life that then just melded into mine, which is what I'm doing now.

SPEAKER_01: 23:21

Let's talk about the organization you started and how how Melissa challenged you.

SPEAKER_00: 23:26

I think you already, in just the short time that we've talked, probably have a sense that Melissa was a pretty cool kid. And it was just three nights before Melissa died. She and I were talking late one night, and I told her yet again how proud I was of how she had lived her life. And I thanked her for everything that I had learned from her through that experience. And as you might imagine, Melissa was she was a little tired that night, but she still had this incredibly keen insight, not only to herself, but to other people. And she said to me a lot of people say those kinds of things to me. And a lot of people did because she was a great kid. But I'm not sure, she continued, that everyone will do anything differently because of it. And then she, in her own kind of special way, issued me this challenge that brought me to what I'm doing now. These were her exact words. If you've learned anything from me through all of this, she said, do something with it. Something to make a difference, to make things better. And I frankly had no idea that night what I could do, and I told her so. But I promised that I would do something. As the mother of four children, I I had not been in the practice of making promises I didn't know how to keep. Um, but that night I did. I had no no clue what I could do. And after Melissa died, she died in June. I spent that summer really thinking first and foremost, what had I learned from her? And it it was just very clear, Serena, that the most important legacy that Melissa left for me was the power of the human spirit, that that not even cancer could steal that if you didn't let it, that not even cancer could rob us of the ability to have meaning in our lives and to feel alive, even when I saw my daughter dying. And I thought, wow, that's her legacy. And if I could find some way to help other kids like her, whether they lived or died, if I could help them find some purpose that was meaningful to help them live their very best lives, as Melissa did, even as she was dying, that maybe that would be a way to keep my promise. So, thus was born our original organization, which was called Melissa's Living Legacy Teen Cancer Foundation. And our goal was very simple. Our goal then was the same as it is today as 1330 Cancer Connect. It was to help teens and young adults with cancer like Melissa live their very best lives today. We always emphasize today. We made the very conscious decision early on that we would not spend any time, energy, or money on cancer research. Not because it's not important, it's critically important. And people much smarter than I are working on that every single day. But research takes time, you know, new cutting-edge therapies take time. And what I saw with Melissa was a need to know right now, you know, how do I talk to my friends? How do I go to school in Melissa's case college with no hair? You know, how do I continue to be who I was, to continue finding my own self-identity, even with cancer? And I need to know that right now. So that was our mission. Right now, how do we help kids live their very best lives? And we started as a very small grassroots effort around my dining room table, to be perfectly honest. You know, all the get-togethers were at my house, the sleepovers were at my house, the picnic still is at my house, even though we, you know, we support hundreds of kids, the picnic is still at our house. Uh, we found a way to help our kids build a new peer community with others who understood that shared experience. Something Melissa did not have. Melissa didn't have the opportunity to meet another teen her age the whole time she was sick. So, little by little, as I started bringing, you know, kids together, I saw the magic that happened when they met other people who knew what that was like, who could talk about their experience without even saying a word, or who could share the experience without even saying a word. And, you know, way back then in 2000 and 2001, right after Melissa died, the whole field of adolescent and young and young adult oncology was a whisper in the medical community. Um, I felt very fortunate to be right at the start of this new awareness that teens and young adults with cancer had long been an underserved and under-recognized group. So it took the first seven or eight years while we were building our peer support programs for the rest of the world to catch up. And by the time you know, data continued to support the very unique needs of our kids, we had honed our programs. We sort of captured the essence of what our kids needed. And by 2015, after having done it for many years and we we felt very successfully, we were able to expand our mission to now include young adults as well as teens. So today, our mission at 1330 Cancer Connect is exactly as it was 20 years ago to help teens and young adults impacted by cancer live their very best lives today. And we do that in a variety of ways. The primary objective being let's build a new peer community of others who understand how my shoes feel. We're located right now in Rochester. We have a second site in Syracuse, New York as well. And through our web-based resources, you know, impact literally thousands of kids every year.

SPEAKER_01: 30:12

Thank you for sharing the story of the genesis of 1330. If I can just take a step back in our conversation, because you mentioned you have four kids. And so what was happening with your other children as all of this was unfolding with Melissa? And how do you think that might have impacted them, impacted the family dynamics at the time and also maybe afterwards?

SPEAKER_00: 30:46

That's a very important component of cancer in our world today, Serena. Cancer is a, it affects everybody, not just the person who is sick, but the entire universe that surrounds that patient. And for me, um, you know, I have three boys, and Melissa was number three of my four children. My two older boys, for the most part, when Melissa was sick and going through treatment, were out of state at college. My youngest son, however, was still in high school. And Melissa's experience impacted the boys in very different ways because of that. For my youngest son, he saw the daily, you know, throws and goes of it. He was the one that got shuffled around to relatives and to grandparents' houses. He was the one who had surrogate people at his football games because we couldn't be there. He was the one that watched his sister in the the bad days as well as the good days. My two older boys, you know, they were home on holidays because they had internships, they weren't home much of the summer. And my oldest son actually, when it became clear that Melissa was not going to survive, I think there was even a little bit of uh anger is too strong a word, but disappointment or frustration that he didn't really understand how serious it was. You know, he didn't tell me until years later that it came as a real shock to him that that Melissa could really die. He said, you know, you were always so positive. You always kept telling us, you know, it things are going to be okay. And in retrospect, I probably could have been more forthright with the boys earlier as I was with Melissa. So years later, you know, I'm only now, and this, I know this sounds strange, and it's been 21 years. I'm still talking to my boys now about what that was like for them then. My oldest son now has children of his own. And I just recently talked with him about the impact of his sister's death now that he has children of his own. It affected them very differently. And there probably are some things I would have done differently in uh retrospect. My youngest son, who was here through it all, boy, he just made the decision he was going to throw himself into every single thing he could because life was too short. Um, in fact, he graduated from high school one year to the date after Melissa died. And I think this is this might be the key to the question you asked me, or a key to it. And Matthew asked to speak to his graduating class on the night of graduation. He asked the principal if he could say a few words. Katie would never give it a speech in his life. Um but he had a very important message that he wanted to give to his classmates. And the gist of it was that he learned from Melissa that life was so short and that to sweat the small, he used a word I that he promised me he wasn't going to use, but he did anyway, not to sweat the small stuff, which was not the word he used. Um but he closed his speech to his you know 400 classmates, which to me remains the most profound thing I've ever heard anybody say about Melissa. He said my sister's life wasn't taken away from her, it was merely shorter than most of ours. And I thought, wow, for uh he was 16 when when Melissa died. I said, for a 16-year-old to learn that from his sister, I just thought it was it, it was so powerful that he was able to glean that from Melissa and how important that continues to be in his life.

SPEAKER_01: 34:57

He was right. Watching her, I think he took the wisdom from her and he was able to apply, you know, to his own life early on, which is another gift.

SPEAKER_00: 35:10

And that's you know, that's something that I try to tell people now. I'm not in those shoes anymore, but unfortunately, I am with parents and kids who are in the throes and goes of it every day. And I I encourage them through the stories that I was able to tell about what what we were able to do with was uh to just take every day and one step in front of the other and don't plan too far in advance, but be ready. When opportunities come, don't shy away from it, don't be afraid. You know, what's the worst that could happen? Just go for it because life is fragile. I don't know when this is going to air, but yesterday was, of course, the 20th anniversary of 9-11. And life happens in a second and it gets taken away in a second. And what I learned through my experience that I try to share with others is wow, life is too short to hang on to things that aren't productive, that aren't meaningful, that aren't important.

SPEAKER_01: 36:14

Yeah.

SPEAKER_00: 36:15

And for my dear friends who and families who are grieving, I said, talk about your kids and force other people to talk about your kids. Don't let those things, the those memories, get tucked away because that's how your kids live on. It still amazes me, to be honest, that 21 years later, you know, literally thousands of people have heard my daughter's story. Thanks to you today, Serena. I hope many more are going to hear for story and we'll learn from that story the same things I learned about the power of the human spirit and how much we have the capacity and the potential to do. And that's a pretty cool legacy for a 19-year-old girl to have left.

SPEAKER_01: 37:04

Yeah, it's incredible. Thank you so much for sharing that story. Before we wrap, any last reminders, words. I know you've given us so much already, just based on your experience, but anything else you might want to remind the listeners about?

SPEAKER_00: 37:21

Well, aside from the personal appreciation and gratitude for all that we have and so much that we can share with others, I would like to just put out a plug to healthcare providers who might be listening to this, to paying more attention to our teens and young adults with cancer, to primary care physicians who treat our kids after their cancer experience, to be aware and alert to some of the very serious late effects that crop up for our kids, as well as secondary cancers, for educators in schools to try to understand how best to support their students if they're going through this experience. And while I hope that wish one day there would never be a cause for a family to need the services we provide, I know that we're far, we're a long ways from that. So I would just encourage people to seek us out or any other adolescent and young adult oncology support that they can find should they need the kinds of support that we offer. You can find us at 1330.org. Again, it's 1330 Cancer Connect. When our kids get sick, they have years and years of potential contribution to our society to give. And it's critically important that we pay attention to that now in order that they not only can be vital contributors, but that our whole communities can be enriched by that. So I just want to thank you, Sarita, for giving me the opportunity to tell people not only about Melissa's story, but to be more aware of the needs of our teens and young adults with cancer.

SPEAKER_01: 39:13

Yeah. Thank you so much for taking the time. Yeah, because I read your website, you know, so I had some sense of what the story was. And you do highlight, I think, some of the things that we talked about today. But to me, there's just nothing better than actually hearing it from you. I think you do say in your website that she was a very special individual, but to really hear the story, it really brings to light what an incredible person she was. And it makes a lot of sense in terms of what you're doing with the organization today. So thank you for coming. Sure. Sharing that.

SPEAKER_00: 39:51

I just consider myself to be uh very lucky to have somehow gotten to be her mom. And I'm grateful to you again, Serena. So thank you and keep doing the the awesome work that you're doing.

SPEAKER_01: 40:06

I thought a lot about what Melissa's brother said during his graduation speech to his 400 classmates 20 years ago, that Melissa's life was not taken away, but that it was just shorter than most. I'm astounded by how much is packed in that one simple sentence in the mind of a 16-year-old. There was a sense of defiance, meaning, don't pity my sister. But there was also this profound wisdom about it's not how long you live that matters, but what you do with the time you were given. I know that losing my dad helped me better appreciate the finality of my own life and has given me focus and gratitude that I probably would not otherwise have if I didn't go through that painful experience with him. I'm also keenly aware, however, that insights like this are often luxury in a sense. It's a perspective that's easier to hold when you can put the adversity behind you. For those in the thick of things, it may not be so easy, but that's also what's really incredible about Melissa is that she had that clarity while facing her imminent death. And that's a wrap for today. Please consider following the podcast if these stories are resonating with you. Also, please let me know if there's a specific topic you would like to hear more about on the show. You can contact me at infotalkaboutcancerpodcast.com or find me on most major social media platforms. Thank you for listening.