“Dear God, I just want to live…” was the last journal entry made by 18-year-old Olivia Allen. The Saratoga Springs teen was diagnosed with Acute Myeloid Leukemia (AML), a rare form of cancer, and passed away within the same year – shocking her community. In this episode, her mother Mellisa Allen takes us into her mindset during that last year and those final days. We learn about her daughter’s resilience and positive outlook even in the and face of a difficult diagnosis. We learn of her frustrations with the healthcare system, and how the “Live LIke Liv” legacy got started.  

Join us as we discuss Olivia’s incredible spirit, unyielding strength in the face of illness, and profound impact on those who knew her. This episode is a tribute to Olivia’s inspiring journey and the enduring love she continues to inspire.

Remember Olivia with a contribution to Live Like Liv & The Bernard and Millie Duker Children’s Hospital: https://www.walmart.com/registry/ER/45be3cad-eb47-44be-8f33-0951fe4fc7b2

 

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FIND HEATHER & JAKE’S HELP FROM HEAVEN ⬇️

❤️ Heather’s Instagram: https://www.instagram.com/heathersstraughter/

❤️ Jake’s Help from Heaven: https://jakeshelpfromheaven.org/

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Keep scrolling for the episode transcript.

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*Disclaimer: This is an automated transcript. Please excuse spelling and grammar errors.  

Mellisa Allen 0:00
Within the next 12 hours, different teams were coming in. And it was very clear that something else was there. I actually can put myself back there in ditch 752 and hearing and just almost collapsing and live just embracing us and saying, like, we’ve got this like, I’m a fighter, and don’t cry. And she’s like,

Heather Straughter 0:23
she’s like parenting you.

Mellisa Allen 0:24
She told me was like I could barely stand. Welcome

Heather Straughter 0:27
to a place of yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show. Melissa, I’m so happy to have you here. I can’t even do a proper introduction, because I have been looking forward to this conversation, which is a pretty weird thing to say, because the things we’re talking about, they’re not easy. I wish we didn’t have to talk about them. I wish we were here talking about golf, like we were earlier, I want you to know how important it is to me and how happy I am that you agreed to be on this podcast. Thank

Mellisa Allen 1:00
you. I was honored that you asked me honestly. So I was thinking

Heather Straughter 1:03
this morning as I was kind of prepping for this. I was like you and I have known each other for a long time. But it wasn’t until I want to say June that we became closer. And it was lives diagnosis, I think that sort of made me want to reach out to you and sort of be there for you. But also I want to backtrack to before that because I don’t know if you know this, I probably have talked about this, but I have admired live from afar for so long. I never really knew her like Ethan and her were sort of in sometimes the same circle. But live to me was always and I think I talked about this in another podcast. But her her work that she did with Best Buddies playing unified sports, her compassion, and her like zest for life was just for people who didn’t even know her. They saw it. And I just I know you know that because you lived with her every day. But I just want you to know the impact that she had on people who did not even know her. And for me the reason all of that meant so much was because not only am I Ethan’s mom, right, but um, Jake’s mom, and we expected Jake to live right like we, we didn’t expect him to pass even though he was sick, we expected to have a full life with him and unified sports and Best Buddies. And all of that was the world I thought I was going to be a part of. So to see someone as vibrant and as beautiful. And as all the things as live was have that have value. Just to me, you know, it could almost make me cry. So I just I wanted to make sure I said that. Thank you. With that said can you talk about live, you know, net. So not just someone who sort of knew her from the outside, but But you You’re her mom and you all the things I just told you, you know, firsthand.

Mellisa Allen 2:36
So just getting back to how we met, we met in elementary school. So we’ve known each other of each other for a very, very long time when we’ve watched our kids grow. So you’ve seen live at her elementary, middle and high school, you know, yours, which is probably incredible to see but also sad to see how it ended. Live had always been a person full of love, she loved beyond measure. She loves our family, she loves being with us. She loved people, she wanted to always help. She really was someone that also had the ability to try anything new. And she didn’t need to follow like the status quo, you know, what all of her friends were doing. And I always admired her about that. And she was confident. I mean, she never played golf, and she would go out there and hit the ball. Like if it was lacrosse, she was absolutely terrible. So just the the commitment that she put to try and, and put herself out there and take risks. It was just so impressive. And she honestly was like that. And she was able to communicate, she always wanted to please us and receive like the compliments. And she did. She was just such an incredible person to all and and even in the end, what I heard over and over was her ability to bring people together and find some sense of unity. And for an 18 year old. That was pretty remarkable. And she met a lot of physicians and nurses and a few of them just were in awe. They described her and I would say the same I’m biased but that she’s magical. Like she was magical. I would say she lived the best she could for 18 years she packed in a whole lot. She

Heather Straughter 4:29
sure did. And I think that I think magical is the right word for her because you know people say things like oh, you know, they fill up a room or they book sometimes you say things and sometimes things are real and with her it was real, you know? And you know, sometimes Ethan would be like, Hey Mom, I’m I’m watching the unified game, or hey, you know, Liv asked me to play in the game, you know, or something to that effect. And, you know, Ethan I love that he did that. I was like you should do that all the time. And he’s like Mom, it doesn’t always work with my schedules. You know, I can’t but she did. She made others around her better. It’s cliche, but I feel like it is true though, right? Like, some people have that magic, that ability to influence that ability to make a difference, that ability to make people better. And she definitely had it,

Mellisa Allen 5:13
I think about a car that I received from one of the physicians and, and this wasn’t the first time I heard this. But as a mom, as a parent, you, you realize that you’ve done some really good stuff like you, you’ve gotten them in the right direction. And when when you hear that someone 18 years old, change their perspective and how they treat patients, how they walk into situations. It made me feel really good inside and proud. I mean, also sad, because we got to that point, but it should make your like heart so full, it’s as it does, and she had no idea of of her impact. Honestly, she really did. And she wasn’t like a super, you know, competent person, like everyone likes me. I mean, she just had a natural kindness with others that it was just special. And it was just safe for whether you’re two or you were in your 40s or 60s or whatever. She just she was able to do that. There’s so many things that she made me so proud about what I’m most proud of is no matter what just fighting that grit, that really salience of of our youth. For most people, it’s just not there yet. That’s always been there. It’s it hasn’t wavered. I remember,

Heather Straughter 6:30
and it must. So her diagnosis day was June 6. Yes. So it must have been somewhere around that. I remember Ethan sending me a text being like, Mom, what’s going on with live? And I was like, What are you talking about? Like, you know, I mean, I was like, I don’t know. And he’s like, I think something’s really wrong. And I was like, I don’t know, like, I’ll see what I can find out. I don’t know, like, I just kept like, I didn’t even know what to think. Right. And then I don’t know if it was Kelly or Joanna. But like, all of a sudden, the word was spreading shortly after that. And my timing is probably going to be off on this. But you’ll know what I’m talking about. I want to say it was like that next week was the student athlete awards. Live was finding out that she had cancer, started treatment relatively right away next day, the next day, and whatever that was 569 days later was at the high school student athlete awards wearing a mask looking radiant, like swept in, got her award, which I mean, a big award because she deserved it. And then I think when right back to the hospital,

Mellisa Allen 7:27
yes, we actually had a few days home, okay, that event and then she ended up having the stroke. Okay, so we that was right after that just before graduate. Okay.

Heather Straughter 7:38
So I think about that though, because I think about not only live but like her group of girlfriends that like surrounded her and kept her safe and you and what that must have felt like for you. Because he must have been so scared to write like, she wants to be out in the world. She deserves to be like, This is June of senior year, like she deserves all of this

Mellisa Allen 7:59
never ever, ever not had a smile. And that is one of her slogans was fight with a smile. And she did every single day. If it wasn’t for her incredible grit and resilience and attitude check in i It would have been a very different experience. And I see I saw that while I was at the hospital. And she did that selfishly, you know, and now looking back at some of the things that she’s written it she wanted us to not suffer, you know, so very selfless. Which makes me sad, because, you know, because you you don’t

Heather Straughter 8:31
want your kids to take care of you or like, Yeah,

Mellisa Allen 8:35
but that’s how she was. And you know, that moment and many moments after it was, it was very scary, because it’s that difficult balance of she’s 18. You want them to have that freedom. But you also know what’s at stake. Yes, you have a diagnosis, but they really don’t understand what

Heather Straughter 8:51
10 year olds in general, they don’t you know, that they’re still at 19 They’re still you tell them things and they still sort of think, okay, you’re being you know, irell like, yes,

Mellisa Allen 9:01
yes. And we did you know, especially after the strokes, she really had to take a step back with not being able to use her right side.

Heather Straughter 9:10
So talk about that a little bit, because I think that I don’t know that everyone knows that part of her story. Right? So she was fighting. So was it a reaction to the chemo? Well, yes. So because that was like its own separate issue, then you’re dealing with the repercussions of a stroke almost secondary to the cancer or the cancer is secondary to the stroke like

Mellisa Allen 9:29
so like so one of the medicines that can cause more complications, especially for older teens is the Aspera Denise and all happened so quickly and with with blood cancer, I mean, it’s immediate the next day the ports and you begin, you know, just because they want to catch you know, it as quickly as possible. So it was just a whirlwind. You know, I we were going with and we were trusting the experts, and I don’t know if I even if I read more if I would have saw this coming but one of the things that I took away from this experience It was live had not been well for a while, you know, she had mono, she had COVID She had flu, she had bronchitis. We kept on going back to the doctors. It’s mono, you know, she’s going to take she actually when I brought her to the hospital the first time I should have I should have pushed harder. But again, you rely on the experts. She she came out and asked, Do I have leukemia day later, you know, she was diagnosed with leukemia. And when it unreal, it’s unbelievable. It really is. And when it came to the stroke three days prior, I bring her back to Albany because she felt like something was off. And she knew her body was gonna say in tune to her body, and I brought an athlete so like, like, knows how her body feels right there. I brought her and they said, Oh, it’s common with this type of medication and things. It’s neuropathy. Three days later, she ends up having a stroke, and it probably could have been prevented. But she called it she said, I think I have a clot, she had a clot that went to her brain. And that brought us to the PICU for several days. And she had right sided weakness within about five days or so she was feeling at least some sensation in her leg. It took probably six to eight weeks for her arm to be able to like, actually move it. Wow. And it was the right side and she’s dominant right side.

Heather Straughter 11:24
So how was she during this? Like, this is a big hit your inability to move when you’re someone who has been like a gymnast? Field Hockey, like just mobile

Mellisa Allen 11:34
for me. Yes. As a mom looking it was we bought we all thought she was going to pass because it was I mean seizure activity. Oh, okay. They actually said we don’t know if she’s going to make it. Oh, so once we got through that, I was like, okay, we can do without the right and live immediately, when she came to was like, we’ve got this, like she didn’t, she didn’t cry that she didn’t have her right side. You know, she was so grateful that she was alive. But she also was scared that I don’t ever want to have a stroke. Essentially, she had a stroke at 18 ever again, like I she was more scared about having another stroke, which it was much more greater as when you have once you’ve had one to have a second. And the seizures, then fighting cancer. So I mean, I she couldn’t go to the bathroom, she couldn’t eat going from being so independent. I would have to bathe her. And I’m sure internally, she was struggling to me on the outside. It was she was like, if I could do this, I’m going to be able to do this. Yeah, you know, and that was we do this? Yeah, yeah, I’m gonna be fine. And, you know, bringing her to SunnyView. And hanging out with all of the stroke adult patients was just such a crazy experience. And she did it with a smile, like every aspect of it was just beaming with with I’m gonna get this.

Heather Straughter 12:58
I want to touch on two things that you said one is, and one because I feel like this is sort of a recurring theme on this podcast. And I always have to try and be careful with my words, because you had a great team, Jake had a great team, you know, I mean, and doctors are humans, right? Like, we hold them to the standards where we expect them to be perfect, and they should be effing perfect. Because it’s our kids. You know what I mean? It’s a really hard thing. And when I hear you talk about, you know, live being sick for so long, and I kind of know that right like that, that, you know, it’s easy to look at things in isolation. It’s like, okay, it’s mono. That makes sense. That’s why she’s so tired. Okay, she just got over COVID took me forever to get over COVID You know what I mean? Like, like, you can look at all these things. And they make sense. But she kind of knew, you kind of know, I always feel the biggest message we can give from my experience from your experience is to push back right like to just advocated, and I learned that lesson too late. It’s such a recurring theme to people who are on this podcast, and to people who have experienced what we’ve experienced. There

Mellisa Allen 13:57
was a big discussion about live by all of the players. And as as terrible as it was, I’m also a learner, and I have an open mind what saddened me most. And I think this would be one of the top three, three things Liv would say is at 18. She felt like she wasn’t heard. And so when we circled back again, because she was very, very ill, and I couldn’t get her off the floor, the main physician leaned against the door. And I said, I said, I noticed that you were here on Saturday. And now you’re back here on Monday. What do you think you are getting out of this visit? We ended up sitting there for probably eight or nine more hours. And so, you know, are

Unknown Speaker 14:37
you serious? Yeah, I

Mellisa Allen 14:38
think they really thought that we were just trying to take advantage of the system. You know, I mean, they thought she was pregnant. I mean, all of these things, you know, oh my god. And

Heather Straughter 14:47
it’s like, when did when did things shift that we don’t put people first right, like when did that shift? And I don’t know when that happened, but Well,

Mellisa Allen 14:54
I think because we don’t have enough people to provide care and then insurance everything cuz we got to do this first and yeah. And in that day, it was June 6, I will never forget for the rest of my life. I mean, we, you know, transition from, you know, after being there for hours to a room and then so that was that was diagnosis. Yeah. So we entered on the sixth, they basically seemed like they were doing us a favor because I said, we’re not leaving until we have more answers. And so they ended up putting us on D seven to do more testing. And within the next 12 hours, different teams were coming in, and it was very clear that something else was there. And I actually can put myself back there in ditch 752 and hearing and just almost collapsing, and live just embracing us and saying, like, we’ve got this, like, I’m a fighter, shoot, I mean, we’ve got this and don’t cry. And she’s like, she’s like parenting, she totally was like, I could barely stand. And when Chuck left that night, we we put our bed we call it mega bed, I saw pictures. And so we would sleep very close every night. And she she was like my cheerleader I should have. I’m so sorry. No, no, I should have been more for her. I was, but you were

Heather Straughter 16:16
it. It was and it goes back to what you said, you should be so proud. Because, yes, she’s her own person. But you allowed her to be the person that she is because you gave her the the freedom to be who she was. I mean, that is it’s a beautiful, it’s beautiful. It’s so classic live that that that this is the story you’re telling, right that she is laying in the hospital telling you it’s going to be okay. She really

Mellisa Allen 16:40
thought it was going to be okay. And even her last couple of weeks when she transitioned whether her gene mutated to AML. And if you go online, like we tried to agree, and I’m sure she did search, but I spent less time searching because I didn’t want to know the answer. One of the things that I took away from this experience was advocacy. And we’ve talked about that I believe wholeheartedly that I was able to communicate, you’re able to you you knew your players, and you were able to push and I I feel that’s where our work could be you know, is to help others that aren’t I have been so grateful for the team that I had and Dr. Halligan and they, you know, we consulted with a provider in Boston children, we worked with Rochester, that wasn’t enough, you know, and so I have, I guess, some comfort in knowing that we did absolutely everything we could to provide her the care that she deserved. And as as a mom, one of the things I also thought about was guilt, like a lot of times you have guilt, and I mean, obviously I have guilt that I’m here and she’s not right. But as a parent and a caregiver, I am so grateful that our community people like you, Kelly’s angels, you name it allowed us this opportunity for me to be with her day in and day out. And that provided her a level of comfort and love. Like I said this yesterday to a group of my friends, I don’t there’s not one ounce of me that has regret, like in what we did, as a family going into this, that’s a that’s a gift, right is such a gift. And because I you know, getting into all of these support groups and stuff like that, that’s a big piece like I would have, should have could have, I mean, I would have given my whole body to save money goes without saying. And, you know, I know 100% That with her team at the melody center, and the other providers working, and then our family and friends like we we were supported. And that is a testament to live also off like 100% So yes, and you know, I look at other people again, not having those things. And when I go back to you

Heather Straughter 19:02
mean there’s part of that, and this sounds weird, but it has to feel good. The love that surrounded her and you guys and still does has to feel good. It’s I mean, you know

Mellisa Allen 19:13
that you’ve done something right. You know, and I’m a I really believe that, you know, if you’re a kind human and you know, you work hard and you’re open minded and I’ve always been someone to be open to all and I know that I taught my children that as well. And people like former students that are in their 30s reached out they some of them even showed up to her service. And you know, that’s your legacy. Like that’s who you you know, that’s what you want. And although live only lived 18 years, she did that with in the school setting outside of the school setting. I mean, I couldn’t be more proud. I wish I wish I could tell her over and I know she hears me but she just has no idea

Heather Straughter 19:55
the impact. So you had started to talk about like when when you knew When you knew it was time, I remember that. And I think I told you the story, Brian and I were in Jamaica, and I woke up in the morning and I’d had this kind of dream about live. And I was kind of like, huh, like, I just kind of had that. And I texted Kelly, and I was like, Hey, how’s everything with live? And she called me and I didn’t pick up right away, because I was like, I text I was like, Hey, I’m in Jamaica. And she was like, call me back. And I was like, Oh, shit. And she said, You know, every, like, Riley was coming home and the girls were coming home. And it was time. So what had happened like

Mellisa Allen 20:28
so from what I understand live now is the third case that they can find that her case her B cell, a ll mutated to AML. AML is very, very aggressive. Yes, some people can survive, but the survival rate is like 7% looks like under three years. And immediately when that information came to live in I we had lives nurse and Dr. Halligan looking at us. And she I mean, she’s like, this is not what we hoped for what we expected. And you know, of course, I’m in tears live looked and she goes, You know what, I feel like, this is not a bad thing. I didn’t get into remission right away with AOL. Maybe now with this new diagnosis, I will and it’s not changing the outcome, because we still had to do bone marrow transplants. So in her mind, she already she she was already like, in a better spot. I mean, I was like, curled up. Yeah, you’re like a fetal position. Asleep. I was like, I’m just yeah, a mess. And she’s already figuring out how to power through. And I loved that perspective. Because, I mean, most people are gonna go down a rabbit hole, right? And say, Okay, what else can I deal with? She wasn’t that way at all. And it’s, it’s hard to do. Yeah, a lot of people can’t do that. And, you know, even if someone has thrown a curveball at me, I’m like, trying to find the silver lining. And I’ve always talked to my children about that, and the importance of, you know, the greater good, you know, sometimes it doesn’t feel well, but like, how can we what are we learning? What are we doing? And how are we growing? And she had that mindset, you know, it’s like, okay, yeah, this is a roadblock. But what are we going to do? Like, how are we going to write? Yeah, you know, and so even though we had some dark days with news, you wouldn’t have known that you wouldn’t have. I mean, in that setting, she was taking every moment. I mean, nurses, people would come off there, or not be on their shift and come and see, let’s like, we found ways to celebrate because she brought people in because of her infectious smile and attitude. And that made all that I always say to the nurses, I’m in the field that I still speak with and the doctor, they made her last 10 months better than I ever could have gotten, you know, I mean, if you were given anything, yes, right. She left feeling so much love. So I had a lot of laughter until the last race

Heather Straughter 22:47
to the end, right? Yeah, cuz I remember Kelly telling me like, she’s cracking jokes.

Mellisa Allen 22:52
She was and like, it was her defense mechanism. Yeah, we know that. You know, and I’m like, Oh, my God, you know, she, I mean, literally a few hours before. They said, like, we’re, you know, it’s just going to be probably within the next, you know, 12 hours, and we ended up at I think it was like three o’clock in the afternoon. And then by 205, she passed between two and five. She was still like, aware and having conversations, she would say, Mom, I just need to sleep Five more hours, and I’m going to be all better. Oh, geez. Yeah. And she and she really believed that and what a beautiful

Heather Straughter 23:29
outlook, what a testament to her love for her family and for the life that you guys gave her. I mean, she loved her life so much. She fought to the very, very end and that is beautiful. She valued life. And I think that is just that is like her legacy, right? Because so many people are so careless with their life, right? Like and don’t recognize the gift that it is, and she just hung on to it to the very end. I mean, it’s just,

Mellisa Allen 23:53
I don’t know how many times she actually said I was just like, you’re absolutely right. Like

Unknown Speaker 23:57
take a nap. Yeah.

Mellisa Allen 24:00
Sweet girl. And when she passed, I and I shared this with you, I I wanted to find something that she wanted me to know what I know. She wanted me she did say an awful lot but one of the things in this one you talk about Carolyn’s humans are people just making terrible decisions she the last entry was please got and she wants me she’s not necessarily you know, super religious human. And please God, I’m begging you. I just want to live dot dot dot. I when I read that I just cried. And I wouldn’t want I would wouldn’t wish and that’s where I bring myself back all the time is I want joy for others. I would never like you and I sitting here. I would never want anyone to go through this. I think sometimes people don’t realize how lucky they are. And like again, that’s another gift. You know, we have a change of I mean, I always had no good perspective but like I really

Heather Straughter 24:54
it’s a it changes you right? I think you are doing a much more gracious And then I did. Because I had and sometimes still have such a hard time, right? Because life is such a gift. And so many people, like you said, the careless and the bad decisions, and Lord knows I’ve made plenty of bad decisions and will likely continue to. So I’m not even saying. So I’m not saying that in this like judgmental way, if people could stop for one second, and if they could think about what the loss means, and what forever means. It’s just heartbreaking. And you can pick up your pieces, and you can live your life and you can share, like you can do all the things that we are doing, it’s still there, it’s just still there, the hole is there, the hurt is there, the sad is there. And you just want people to know that and you can you know what I mean? People need to get there in their own ways, but you’re being gracious sometimes when I was like, right after Jake died, I was I was angry, like, I was very, like, sometimes had to like, check myself, because I would just things would make me so mad.

Mellisa Allen 25:58
And I think that’s I definitely have thought a lot about this. And we’ve had a couple of different conversations about, you know, some recent events here. And, you know, I keep reminding myself, well, one, you can imagine now how that parent, right or sort of sister, brother, you know, whatever, feel because we’re now in this together. And, and again, I wouldn’t wish that on anyone. But I keep going back to if someone wished that on me. Like I just I just not I don’t operate that way. And so it does make me pause. And I do I mean, there’s so many terrible things happening around the world and, and live and Jakey should not have been on many other should not have been the kids that were taken too soon. And you know, I had to really sit with there’s no choice. Yeah.

Heather Straughter 26:46
It’s not a it’s not an issue. Yeah, yeah. It’s not. If This Then That. Yeah.

Mellisa Allen 26:50
And that’s I struggle with the whole, like, you know, bargaining, there’s no bargaining,

Heather Straughter 26:55
right, you know, like, I don’t know, I still sometimes wish I could have like, I wish you could, you know, negotiate, bargain, do that do the things. I’m really fixated now on her, like, let me nap for five hours. And I get like her fight to the very end. And I knew she fought to the end. But I’m going to keep that inside of me. And I think that that is it’s really powerful

Mellisa Allen 27:12
people that were around her, which, you know, just were in awe. And I wish I could just read all of the messages. I mean, you saw some of my social media, but some of the private messages that I received, I’m just in awe of that, you know, and one of the other things that stood out to me too, was, I mean, she developed a really good relationship with her oncologist. And of course he did I mean, honestly, I think like she could have moved in with her and immediately and they would have, you know, lived happily ever after. But I’ll never forget she Dr. Halligan looked at me. And she’s like, I’d like to have a moment with live and have this conversation. And of course, mommy mode was like, if I’m not there, I can’t protect Yeah, I can’t temporary like I can’t, I can’t soften and soft. I can’t. She’s one of the softest humans I’ve ever met. And I mean, we’re very much alike. And the only person she trusted in that hospital was her. I don’t know, I’m I never came out as I don’t know, if the doctor felt like she failed. In my mind. I would never ever go there. Right? I know. I mean, this person sacrifice so much of her being and time and love for my child. I know. I mean, she would have given her everything free to be able. And Dr. Halligan sitting at the side of her bed, and she would always say lovey, and Liv looks at her. And she said, I’m going to spend tonight just looking at different clinical trials. Maybe on Saturday, you could come and we’ll just sit and explore and see what my options are. Now, she had heard less than 15 minutes earlier. We don’t have a cure. And she’s already like she’s looking to try. I mean, she had a plan. And and I said you’re absolutely right. You know, live, I said, you we have options. I always said we there’s always up there’s always options, right? And you hope that options will present itself and you hope that she’s going to be the one and I knew at that point, no matter how Liv felt it what there wasn’t, you know, it was just a matter like, you know that this, we had reached this right? Is it going to be a week? Or is it going to be two months? And you know, I was hopeful for two months, I would have taken anything but looking back now and watching what I saw was the most traumatic, She obviously was drugged up and didn’t experience that and I can only imagine like her friends are really struggling. I couldn’t imagine for my personal you know, yeah, benefit to say, let’s keep her stuff so that I can have that I can sit next to her. Yeah. And when I talked with the doctor, you know, I said you you’re you are the expert, I’m trusting you and and I said you tell me you gotta guide me what to do. Like I’m I’m going to follow your step and I trust that you are making the best decision for my child who you absolutely love you. And she and she said this is what I think you know will happen and what we should do and I said, Okay, let’s do it. Honestly, I again that’s another thing where I don’t feel guilt I could we have maybe kept her alive for another

Heather Straughter 30:10
but there’s a live and there’s living and there’s you know, it’s it’s it wasn’t by let it you know by doing it the way you did you you honored everything about live right. Yeah, I

Mellisa Allen 30:19
mean, I mean she didn’t eat for two weeks. So she was suffering she didn’t realize she was suffering but you know, in just like not even willing to are able to get out of bed again. She didn’t think of it that Yeah. That’s not how she looked at it. But that’s that’s where we saw that. And so, a few hours before she passed, I had stepped in the bathroom. And I obviously I want to cry because if she actually woke up I didn’t want her. Yeah, because I’m the strongest person. So I said, I’m gonna text her. I texted her earlier. And sometimes she would remember that she didn’t have her phone or would you know, you know? Yeah, they’re like, attached. And I was like, please just text me back. So I have one more thing. And she did. She said, I love you more than you’ll ever know. It will, Melissa.

Heather Straughter 31:03
I’m going to overuse this word, but it’s kind of a gift too. I mean,

Mellisa Allen 31:07
I mean, do you? I mean, she, she could she wasn’t texting people back. You know what I mean? I mean, if I just put it out there, like, if anything, can you say? Yeah, whatever I want you to say to me, because yeah, I want because I need

Heather Straughter 31:18
this, I need this right now. And she knew that. So now you can like never, ever, ever lose that.

Mellisa Allen 31:25
I’ve taken so many screenshots just in case. CVS is everywhere. That is that describes like everything I get. So it’s like in a nutshell. It’s exactly yeah. And and people have said like you two had the most beautiful relationship we and Sophia, like our family, we just love each other. Like, you know, it’s genuine and they wanted to hang out with us. Which, you know, like, what is going on high school?

Heather Straughter 31:50
I have nothing not normal. Yeah,

Mellisa Allen 31:53
I you know, I try to find like that silver lining is it wasn’t meant to be that way. Like we were we always supposed to be that close. Because our time was not gonna be short. I don’t I don’t know.

Heather Straughter 32:03
I less so now. But I always sort of because it’s like, you try so hard to justify or make a reason or an explanation, right? Like, it’s not the negotiation, but it’s that it’s that same idea, right? Like you want you want to understand, do you understand, like, why my family and we’ve looked at it that way sometimes too. It’s like, because we because we could because we could shower so much love and we could handle the sickness and we could we could make a life out of that we could make a life out of something really shitty that some people couldn’t and we made an okay life and Jake only lived for years. But like, and we can do a ton with him. But we did everything we could we would go to the city and we would go to Lake Placid and an Ethan would do all of these things in front of Jake so that like Jake kind of could watch and do it too. You know, like I feel

Mellisa Allen 32:46
sad for us. Yeah, yeah, yeah. But you do you I guess you have to try to make sense of it. And I guess I think a lot about that as well. Like, I guess we don’t have to make sense. I’ve been thinking about you know, sometimes terrible things happen. That’s

Heather Straughter 33:00
so hard, right? Like, because you were alright, I don’t know. Like I want to reason still after all this time. And it is it’s it’s just the randomness of it scares me. And I will say honestly, like, sometimes I never went to therapy for any of this stuff. Like sometimes I’m like, maybe maybe I should like, because I do think, for me, I need to try to make sense of it. Because if I think it’s all just random, it’s hard for me to live. It’s hard for me to be Ethan’s Mom, if it’s just shitty bad luck and random. I want to talk about Sophia little because I don’t know her well at all. But I will say it at live service, the way she stood up there in front of all of those people with Aubrey, and they both just were so impressive. I mean, for a 16 and 18 year old girl to get up there after they had lost their sister and their best friend and talk in front of you. I mean, it just it was it was amazing. Sofia seems to carry herself with grace. I mean, it’s gotta be hard. Like, how is she doing?

Mellisa Allen 33:56
It is very hard and, like live. She’s so magical in our own way. I mean, to, to be able to do that was just incredibly stunning. I mean, unbelievable. What I found I needed to do was I wanted her to be part of the process. Because I think what I did wrong, was I should have included her more like, you know, it’s getting to this point, you were trying to protect her and yeah, and you know, she’s 16 and you know, so again, going back to she created her own narrative like so I think she would have done things differently and I should have trusted that she like given her an option. If I could have a do over that. That would be it. So moving forward towards the service and stuff. I my goal was like how do you want to be involved? And if you don’t, that’s okay too. But yeah, and but giving her the options to the prayer card. She picked, you know, picked out that and then I said I don’t need anyone to speak but you two had such an incredible bond. And you know They look a lot of like they’re, you know, two and a half years apart, but they just live back nightly while you sleep with me all the way up until the better end. I mean, even in like the last few days live that, you know, we were all together. So they had a really special relationship all the time, we would say live or sofas like lips, little mommy, because she many me for because she just had she has a natural caring way. And she’s very aware what I found most impressive. Not only was the speaking but in the last several days. And I’m sure like Kelly and a few others would say this, like she read the room, she knew that I wasn’t in a place. She shouldn’t have been in a place, right? I know, I’m looking I’m like, How did I not? You know? Because you’re just right. Yeah. Right. So and she, she was tending to all of the adults. She was, you know, trying to bring people together. You know, so an adult was crying, her hand is on the leg. I mean, this kid is just, she’s a great, great person and a lot like live and in many ways, she’s struggling, you know, obviously, it’s, it’s quiet.

Heather Straughter 36:08
You know, she and there’s it’s different to be an only child, she’s very

Mellisa Allen 36:12
fearful about being an only child. Now, it’s, it’s the, that this can happen. Right? Yeah. And so thinking a lot about our health and well being and, you know, being left alone, you know, she has said, Like, who do I talk to? Right? You know, and I don’t have an answer, right. And that’s the part that I have struggled with, with with her and communicating with people as a whole, like, life is not guaranteed, right? Nothing is guaranteed, but you really don’t expect it to happen to you until it ducks it affects every ounce of you, right? It cuts you at your core. And for her, she wasn’t really great about immediately articulating and for her her quarters cut, like she she is splintered. She doesn’t know where she fits in a family and you know what her future is going to look like. And

Heather Straughter 37:04
it’s 16 it’s, you know, not to simplify this, but it’s 16 Life is hard anyways, right? Because they’re like hormonal and emotional and you love your parents and you hate your parents and you love your sister, then you hate your like your I mean, like part of being 16 is just fundamentally difficult, very difficult. And then you throw this piece into it, no matter how well rounded or grounded or anything, it’s just it’s such an accurate way to describe it, like kind of cut at her core.

Mellisa Allen 37:29
You know, again, I was trying to take her lead. But as a counselor working with with teens, I was always checking in checking in for live was acceptable. Like she loved my attention. Sophie as much more independent. And, you know, I thought I was doing like all of the right mom’s dance, you know, and trying to hold myself together and check in with her. And then we went to therapy. And she was like, I feel like when you do that you’re expecting a reaction. And maybe I’m not prepared for that reaction.

Heather Straughter 38:00
I was like that. Wow. Pretty articulate. So yeah, like, I

Mellisa Allen 38:04
am so sorry. I, I felt like I needed to write. She’s like, well, when you do that, I feel like I have to have a reaction. And I said, Well, what what? Yeah, what will work for you? Right? Because I know how I am. And I am a fixer. I know everything. And I know now, I can’t fix everything. So what’s that? It’s hard. Yeah. So to the core to and she’s like, trust me trust that I will come to you. She’s 16 Like, it took me. I mean, I was blown away. I was like, How can you be sitting here with the one of the greatest losses and give me guidance? Right, right. And I, I’ve had to check myself because I am trying to, you know, take her lead and allowing her to tend to her grief the way she wants to at this point. And I do I drop the reminders. Like if this doesn’t get your attention, right, then it comes out in different ways. And that worries me and, and her safety and well being is, is my you know, utmost priority.

Heather Straughter 39:00
And it becomes you just can’t imagine anything ever. You know, I mean, like, it’s like this this, like, you know, I don’t really want to say the words right, like, but I just couldn’t serve, I couldn’t survive it again. And I have to sometimes be careful that I don’t take my crazy anxiety when I let that when I let those thoughts go there. I have to keep them so inside, I can’t put that on anyone else. You can’t. It’s real, you know, and it’s real and intense and intense and just terrifying. Like breathtaking. Like I can can take my breath away,

Mellisa Allen 39:27
you know, with with living 18 And all of these little milestones and you know, kids getting sick and stuff, it’s my immediate go to now where I’d never would have gone to the negative. I know that in order for Sophia to be a healthy human or an adult. I have to keep that checked.

Heather Straughter 39:44
I find that that is the residual of the loss that we’ve had writers like how to keep that in check and how to not not let it ruin our lives but also you don’t want to bottle it in but you don’t you don’t want to you don’t want to screw up our other kids because of it. The

Mellisa Allen 39:58
relationship is It’s important, right? Yeah, you have grown to develop such a wonderful relationship with Ethan. And that’s, that’s my goal. Like, I can’t take away the loss, but I can be more mindful about how we communicate and

Heather Straughter 40:15
how she wants you to communicate with.

Mellisa Allen 40:17
And that way, I’m very controlled and so much I love control. And, and I love structure and everything. And that is growing pains. For me, it’s hard. Yeah, it really is. And, you know, like you said, like, just being able to, Hey, can I go to my friends who’s now driving, and she’s gonna pick me up, I’m learning

Heather Straughter 40:37
all those things. So like, you’re in those stages, you know, you’re in those stages that are without our loss impossibly hard, right? Like, but they’re just, there’s a little extra to them, they will be changed people. Because of this, I tend to look at it and where I think that they carry with themselves, like, whether it’s maturity or compassion, or both, kind of all of the, you know, I mean, I believe they’re going to go forward in this life and, and be of service like, like, just to have a kinder view.

Mellisa Allen 41:06
I’ve already seen her frustration level for other people making terrible decisions, you know, she is expressing Yeah, how could that you know, I mean, live just wanting to live, you know, and, and I, you do have to remind them, like, you know, they are still growing and learning and even adults make mistakes, but she’s very black and white. And I think probably more so now than ever than ever. Like this, we have to take it serious. And you know, I see the positive and negative with that. I also believe that she just has this an internal drive to now like, do more, do more as a result, like, you know, whether it’s Can I come up with something to some sort of treatment or better care, or wherever that will be? Well, I mean, one of the things that she asked last week, she was like, Can we make a plan and go see, this young man who his his mother passed away, and his father passed away, and he had been in PICU. While we were there, and was there for almost a year, like he we just connected with when live started treatment and on D seven, we would go and meet it should have one arm they would play little ball and bowling and the little Yeah, but Sophia would always come she loves him. He she was just like, I want I want to go back like he doesn’t he doesn’t have the support like we have. And I was just like, here you are. That’s thinking again about other people. That’s awesome. And at 16 You know, that doesn’t happen. No, I’ve been checking I have been given a gift but they think we have given them the gift of fine trying to find like the silver lining. Yeah, good and all and I think that’s going to carry them when did the

Heather Straughter 42:51
live like live start a It’s so catchy. Be it’s so contagious. Her two

Mellisa Allen 42:56
things that she would say is I’m going to fight with a smile. And so that was one of the slogans and then live like live she would get disappointed and others that may have had like bad situation to and not give their best. And she’s like, I’m here. I’m fighting. Like, this is your only option. And she really believed that I believe that for her. I believe that for all of us, actually, I think that it gave her I guess a wrapped her up in one, honestly. And it stuck and it captured the attention of you know, the US Women’s Yes, it field field hockey team to do one, you know, and people saw that. And she’s been dealt a very bad hand. You know, we’re very unlucky and lucky but to take something so terrible and try to find some joy and to fight and everyone should want that. You know, and she really wanted that and i i hopeful like that message

Heather Straughter 43:51
still to her legacy. I mean, it is I can’t think of a better one. She would

Mellisa Allen 43:55
say I want to make cancer look good. I want I and some days she really impressed me I was like I can’t even look like that on my really good day. And that was like at make me fat. But she she did that and I guess it just came natural. Like there wasn’t she just said it you know

Heather Straughter 44:15
and I was thinking that was it but I didn’t know if there was like a family thing or something like that, you know if there was like a hidden

Mellisa Allen 44:21
like, I mean, she wanted people to be like her like you know, the US were unlucky right now. Yeah, but I’m lucky right? I’m not gonna have I have options. Yeah, that’s again, I would always say we have options like a lot of people don’t have options, right. I think that really guided her into you know,

Speaker 1 44:37
this mindset of I’m here I’m I don’t have a choice. She would say that I don’t have an option and pick it but here I am, you know, for anyone young or old to see someone who was so unlucky still have an incredible attitude. Like that’s impressive. And she did that. Again. It goes without saying I wish we were here talking about our golf You know what I mean? Like I do, but there’s so much there’s so much in what you shared. And there’s so much in just your girls and in live to just be proud of, and I think that she has left, she has left us with this legacy. It’s almost like she had the foresight, right? When she says something like, live like live because it really, it is contagious. And it is something to you know, like, when Ethan wore his shirt in France, I was like, That’s it like that is such it’s just the message. It’s just the thing. And

Mellisa Allen 45:27
if we did all operate in with that mindset, what a place we went

Heather Straughter 45:31
to place it would be, and it’s just such a gentle reminder, right? Like, it’s like, no one can be on 100% of the time. But it’s a reminder that that we have options that you can you’re looking at the world this way, and you can flip the switch.

Mellisa Allen 45:43
She was born with a growth mindset. And um, that doesn’t happen very you know, it’s not like you said she had the foresight of like this might, who knows this was our plan. I wish it wasn’t her plan. No,

Heather Straughter 45:55
but I do i You said this before, and sometimes i i Find comfort and maybe it’s because I’m I’m so far in this sort of like, journey of whatever. But I find comfort like what like when you say like you guys loved so hard. And you know what I mean? Like, you never wish to bury your kids. Your kids should be bearing us like, I mean, that goes without saying, but but since it did you had these 18 years of just joy. Oh, Melissa, I I’m so grateful for you for having this conversation with so much more to tie. No. Thank you so much, Melissa, for being here. I appreciate you and I have loved this conversation.

Mellisa Allen 46:28
Thank you for having me.

Heather Straughter 46:31
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