Complex Parenting Times Two, Ambiguous Living with Parvathy Krishnan

When not one, but two of her children were diagnosed with devastating rare genetic disorders, Parvathy Krishnan's world was turned upside down. Her daughter battled multiple conditions for years before passing away just after her fourth birthday. And her teenage son is a five-time cancer survivor.

In this profoundly moving and insightful episode, Parvathy pulls back the curtain on what it means to be a parent in constant crisis mode - the relentless anxiety, the hospital stays across multiple cities, and having to parent two children with rare diseases simultaneously.

Yet Parvathy's story is ultimately one of incredible perseverance, radical hope, and unconditional love. With wisdom and candor, she discusses brutal concepts like "ambiguous living," and shares hard-won strategies for staying present and techniques like visualizing being "stuck in tar" to center yourself amid the unimaginable.

Parvathy's journey has also sparked a new purpose - founding an advocacy organization to build support systems for other families facing ultra-rare diseases and catalyzing patient-centered care revolutions like insisting full medical teams round inside patient rooms.

You'll learn:

• Why you should admit that things suck
• How to start fixing things, even if you're still in your PJs
• How to advocate for your care or the care of your child
• Why being stuck in tar can be a good thing
• The immense value that comes from sharing
• And so much more...

Learn more about Parvathy:
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Krishnan Family Foundation

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Music credit: Limitless by Bells

Transcript

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It" podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey and I hope you enjoy the conversation. 

Our guest today is often on the receiving end of people saying, “I don't know how you do it.” I think I said that to her the first time we met. Most parents have their hands full just managing the ins and outs of a busy household.

But imagine being mom to two children who are both battling rare, life threatening genetic disorders. Kids who are often being treated at the same [00:01:00] time, in different hospitals, in different cities. 

In today's conversation, Parvathy Krishnan shares her family's extraordinary journey, opening up about the relentless juggling act of caring for her daughter who passed away at age four after several genetic diagnoses and her teenage son, a five time cancer survivor with his own genetic syndrome. Parvathy doesn't shy away from the darkness, and her resilience shines through as she discusses concepts like ambiguous living, feeling stuck in the tar as a coping mechanism, and the advocacy work creating support systems for families like hers.

Parvathy is a rare disease specialist and healthcare professional who is an expert in patient advocacy and patient caregiver education. She's a passionate advocate for patient family centered rounds with special focus on mental health for children with medically complex needs. She also serves as the executive director for the Krishnan Family Foundation, focused on research, scientific advancement, and patient [00:02:00] family support for CMMRD, a genetic cancer predisposition syndrome.

It is my honor to bring you my friend Parvathy. 

Welcome to the show Parvathy. We have been talking about this for a long time, and I'm so glad we're finally making it happen. 

Parvathy Krishnan: Thank you for having me. And I'm so excited to be here as well. 

Jessica Fein: Let's start by hearing a bit about your beautiful and unique family. 

Parvathy Krishnan: Oh, that's a lot.

I'm going to try to keep it succinct. I am mom to two medically complex children with multiple genetic disorders. My daughter came into the world with a bang and left the world with a bang as well. When she was born, we didn't know she had all of these genetic conditions, but through her four years of life, she ended up having four different genetic diagnoses, each of which had its own trajectory and its own course.

But overall, her quality of life and she wasn't doing as well as we would have liked her to. And so we did palliative care and hospice before she passed away, two weeks after her 4th birthday. My [00:03:00] son is still with us. He will turn 16 soon. He is medically the easier child, and that's all I'll say, but, uh, he also has a genetic condition that predisposes him to multiple cancers, so he's a five time cancer survivor, and he is still here with us, and so that's the long and short of it.

In our family, we came to know about all these genetic anomalies after our children were diagnosed, which is usually not the way most families know about it, but yeah, that's us. 

Jessica Fein: How old was your son when your daughter passed? 

Parvathy Krishnan: Almost 10. 

Jessica Fein: We'll get back to that because I thought about that a lot. What it must be like for him at 10 who is watching what's happening with his sister and then knowing he has similar diagnoses.

Parvathy Krishnan: It's definitely a lot. You know, it was interesting because at one point we were the most, whatever normal is, you know, so we were, we felt like we were the most normal family. He was a neurotypical child, didn't have anything growing up, you know, like when he was [00:04:00] born and things like that. So until he was 4, life was peachy.

Even after that, we just had a few things that were starting to show itself in the diagnostic odyssey, but it wasn't life altering. We didn't have an actual diagnosis. And then at 6 is when he really started having more procedures done. It was around the same time that my daughter was born as well. And so no one expects this, but we definitely had not planned to have two medically complex children undergoing treatments, absolutely radically different treatments at the same time, different hospitals, same hospitals, different floors, same floors, sometimes rooms next to each other and sometimes really far apart.

The hardest part about all this was knowing that after being the only child, his world had completely rocked. Not only that he had a sibling, but he had a sibling that was very sick all the time. It was right after his eighth birthday in the summer of that year that he was supposed to have this major procedure where they were taking out his colon and rectum and all of that because of cancer.

I'll never forget he looked at me and he said you're going to be there, right? And I was like, well, of course I'm going to be there. He goes, no, no, no, no. You're my hospital mom, too, [00:05:00] right? Like you will be my person. And I said, what do you mean? He goes, well, you've always been with Ira and you've always been in the hospital.

And so now I'm going to be in the hospital and you have to be the one that's with me. Now, love my husband, he's an amazing father caretaker, but it was very fascinating that my then 8 year old had associated me as the hospital mom, and that he felt like if I was not there for him, then either something was going to go wrong, or that I was the designated parent, you know, who could manage everything in the hospital while dad did all of the outpatient crazy stuff as well.

That's when I realized that his whole perspective to life, how he viewed our life, how he viewed Was so different, you know, and then two years after that, she passed away. It's pretty daunting because right after she passed away, he had a near death experience. He had a procedure, woke up in the ICU and the first thing he said to me was, “Am I dying?”

And I said, No, you're not dying. You know, here I am thinking like he feels like he's dying because his sister had just passed away. And he goes, She had never been to the [00:06:00] ICU before. And I have. And so something must be really wrong. And so we did everything in our power to move him out of the ICU in like 48 hours because we were like, no, you're not dying.

It was scary and fascinating and just interesting to see how he processed things because we had never thought that those would be the connections he would make. There was a very difficult time for us as his parents, but also as parents who had just lost a child, facing questions from this other child who was asking very relevant, real questions.

Things that we now look back to, like, how did we make it through that?

Jessica Fein: How did you? How did you? Because, you know, I mean, we've talked to so many people who are parents of children with rare disease, parents of children who have passed away, and we talk a lot about the siblings. And we talk about all the roles that the parents suddenly are thrust into in terms of advocate and caregiver, et cetera.

But you're having to also be kind of like therapist at the most significant [00:07:00] level, dealing with these life and death, real questions and fears that your son is having. How did you get through that? How did you know what to do, what to say? I mean, we all question ourselves under normal circumstances, and this is, like, as far from normal as can be.

Parvathy Krishnan: You know, now, looking back, I wonder, like, how did we get through it? Like, this is so unreal. It's still, sometimes, we close our eyes and we're like, did this really just happen to us? I feel like we're in this boat with the holes and we're constantly patching up the holes. And at some point, I'm hoping it'll become a yacht or something nicer, so at least it'll feel like we upgraded our life, but right now it's still, you know, it's not a catamaran boat, at least, you know, we're a little bigger.

I think the adrenaline, the fact that we tried so hard to just do the best we could, knowing that we had to act and react. And a lot of therapy later, we know that even if at times I don't give myself the grace to [00:08:00] say I did the best I could, I know that we did do the best we could because, you know, there's no what to expect while you're expecting in our life.

I remind myself every day, like, this is not something that we were meant to do culturally. Historically, this is not how the circle of life worked. The processing is lifelong. When we get a new diagnosis or we're told something, I react, but now I realize that I should now watch how he reacts because he's much older and so I'm just like trying to keep it together.

And then he'll tell me sometimes he's like, I think you're more upset about this than I am. And I'm like, well, of course I am, but are you not upset? And he goes, I mean, they're doing the best they can, which then is like, are you telling me that to placate me? Or do you really feel like that? So, you know, it's just a constant seesaw of growing with him, learning from him, Growing myself as a mom because, you know, I am now dealing with a teenager with a condition, but our life started when he was 4 with this condition.

And so how I protected [00:09:00] him, how I nurtured him, how I process things with him is so different. And I feel like we're constantly learning. 

Jessica Fein: And you're right. There is no guidebook. That is for sure. And you talked a few minutes ago about how sometimes you would be caring for both kids They would be in two different hospitals.

I mean, I think about kind of quote, unquote, normal parenting. I think the most normal parenting moment I ever had was having two kids playing on baseball teams who had games the same night and they were on adjacent fields. And I remember putting my chair halfway between, right? So running back and forth between the two games.

What a magical quote unquote, normal parenting moment. And you and I have had lives that are what I call, Extreme parenting, right? You know, you think of extreme anything, and this is parenting on the precipice all the time. When you're saying my kids are in two different hospitals at the same time, I'll never forget when we were talking one time in [00:10:00] person and you shared that with me, how in the world do you navigate that?

Parvathy Krishnan: Thank God for technology because we took a lot of face time, you know, trying to manage speaking to the medical teams. The hardest part was processing and putting the puzzles together when you're not there. And the worst part, at least. Now, looking back, the worst part about this was neither of them were getting treated at our home hospital.

And so, my husband would travel with our daughter to Cincinnati Children's, and I traveled with our son to Boston Children's, and we live in North Carolina. We also had to run our home while we were doing all of this. We had an amazing complex care and palliative care team in North Carolina, which is why we felt like we could still have them as an anchor to come back to, and this was home.

But lots and lots of Zoom calls, you know, I wish we could say we had it perfect, but there were times when one child was on the floor and the other child was in the OR and they would call us to do like the post op conversation with the parents. And I'll never forget when we were having one such conversation for our [00:11:00] son, we heard a code.

I don't remember code something. It was not a code blue because she hadn't stopped breathing, but it was a code something, and it was from our daughter's room. And, you know, wheels were turning, and then we were like, Oh my god, we have to go take care of that child now. Can you hold off telling us what is wrong with this child?

And then we ran up, and she was with a sitter, and she had just fallen off the bed. And it was one of those moments where we were just like, can anything else go wrong? What else can we go wrong? But yeah, it was very, very, very difficult. And kudos to anybody who's taking care of more than one child who's medically complex, because it is the most painful, gut wrenching, exhausting experience where most of the times we were just trying to stay above water, holding jobs for like four years of our life. Both our kids came with us wherever we went to whichever hospital, whichever doctor had to do. Sometimes it worked where they were all on the same day, but lots of times it did not. Now, looking back, we had a puppy and I was [00:12:00] just like, I can't do this. I can't have sleepless nights.

And I looked at my husband and I said, how did we do this? We are the same people. Like somehow, you know, now with this different normal, we've changed and we've moved. And now even like less than six hours of sleep. It's like. How can we process this? And we had four years of our life where we never slept more than 30 minutes at a stretch.

Jessica Fein: You know, I can totally relate to that. And I felt the same way when I was starting to look back. And I wonder if when we're in it, we're so up close, we just see like the minute details and the very next thing that needs to happen. We can't take in the whole picture because if we did, we would just collapse, right?

So we have to just look at the very next thing that's in front of us. So I had the same thing, you know, again, looking back and thinking, my God, how in the world? Right. But I think you do what's needed in that moment. And you don't pause because if you do pause, then you're just going to get too overwhelmed.

Did you feel that [00:13:00] way? 

Parvathy Krishnan: 100%. We were not afforded the pleasure of pausing. Yeah. We did not have that privilege. It was a luxury. We had amazing friends and families, but no one could play the role of a nurse or a caretaker to our children. They were like, we'll help you. Right. 

Jessica Fein: Although I think we can't underestimate the importance of that because a friend who can say, I'll go get the groceries, or whatever they can do, fine, do my to do list, like go pick up, you know, whatever, the pizza. 

Parvathy Krishnan: Yep, yep. But that was hard because we also needed help in two different cities where we didn't have any community. So we would go from like our giant house to a 200 square foot room and spend time there and try to keep our child alive there.

It's almost like a mind shift. Now I'm like, okay, this is not normal. How are we sustaining? And then, you know, now it's like, how did we sustain this long? And so kudos to everyone who's doing it. Because I think that even just the self realization that this is not normal. It has taken me 10 years to do that.

Has felt like a boulder was lifted off of [00:14:00] me because I'm at least acknowledging that this sucks. This is not okay.

Jessica Fein: Well yes, and good for you for acknowledging that because I felt like, look what Dalia is going through. How can I think, Oh, you know, woe is me, woe is her, right? But woe is you. And so I feel like being able to acknowledge that does lift something off.

Like it is true. What you're going through is unbearably complicated and difficult. And I think that when we admit that, it does give us a little bit of a lift. It does give us permission to say, this is hard. This sucks. 

Parvathy Krishnan: And it's okay to make those mistakes. Now I feel like, okay, I made a mistake. And I tell, you know, whoever it is, it's my son or my husband.

I'm like, you know what? I just don't have it. I finally can say, you know what? Today I just need a mental health day where I'm going to be in bed. Yeah. Whether it's the grief. And it's like, I don't even know why. I'm just like, I just cannot do it anymore. So I think that that has come with this realization that this is not normal and that's okay.

I've been able to give that whatever self [00:15:00] care, self help that I have needed, even in that small acknowledgement, the shift that has happened, the grace that I give myself on small things. Like, okay, I didn't cook a fresh meal today. It's okay. And I look at all the super moms and I look at all the super dads.

I should be there. But then sometimes I'm like, you know what? I'm still doing amazing, no matter where I am. 

Jessica Fein: Well, yes, and let's just pause and say, not only are you doing amazing in terms of the complex caregiving, but as you said before, you and your husband have been working and you are a huge, huge advocate and you do run a foundation.

So first of all, tell us about your work. 

Parvathy Krishnan: So, got into advocacy as my second life job because of all the work that we were doing. I actually started my advocacy when we had a really extenuatingly long admission with both our children and I said, I'm seeing all these patterns and this is not okay. We're problem fixers.

We don't want to complain. We don't want a parking pass. We don't want a meal voucher. We need you to listen to us so we can fix the problem. And I will never forget. I went down in my [00:16:00] hospital PJs to the patient family advisory board, not realizing that there will be the head of the hospital, the head of nursing and all of them also being a part of it.

And so every parent or whoever's there in the board is a phenomenal board. They, they all share why they're here and what their motivation is and I went there and I was like, I've seen this and this is why I'm here and they were like, tell us more. And then when I watched that become a QI project and they understood that, you know, these have to be done to avoid either medication errors or patient family education.

That's when I realized that I was like, there's a power to this. Like even our worst experiences can become educational, both for those who are helping us care for our children, but also those who may have not thought about it. And I think that was where truly my advocacy started was when I walked down in my PJs to that patient family advisory boards.

I always tell people, I'm like, so you can start big, start small, start wherever you want. But if you want something fixed, you know, you can do it right where you are. If it's a bad appointment, you [00:17:00] can. still call back the manager and say, this was not a good appointment after our daughter passed away. We still were very grassroots.

We wanted to just do volunteers and do support back and give back to the hospitals that she got treated. And slowly since then we've grown and we've refocused into partnering with our scientific and research consortium at Sick Kids Toronto to try to see how we can both do more patient family centered care and research, Do more research for this ultra rare condition.

And support families who have this condition because there's less than 50 odd people still alive with this condition. It's the most aggressive form of pediatric cancer predisposition. And so, one of the unique situations that we see in our community is sometimes more than one child. In our case, both our children had this condition.

And that's not abnormal. More than one child has this. So at the same time, there's multiple children with cancers. Sometimes it's a parent and a child with cancer. So that's a whole level of how do you support that? And how do you live with something like that? How do you care for [00:18:00] your spouse or your partner and your child who's going through cancers?

You know, so there's a lot of community support awareness that is needed because these are not, again, normal situations that we are prepared for. And so most of my focus now has been on trying to support the community and see what we can do, not just with, you know, research and science and all of the amazing stuff that we do need for the people living with this condition, but also to support a community of families that are all affected by this.

Jessica Fein: How do you do that? How do you move the needle when a family comes and they say I have this and my kid has it or two of my kids have it and I don't know what to do. And you know, it is totally overwhelming. What do you do? How can you help that family?

Parvathy Krishnan: Many levels. Unfortunately, because it's such an ultra rare disease, we start off with where are you located?

Because we have like one family in Australia and one family in Scotland. So mostly sitting and first listening like, okay, where are you? Most of the times there's an active cancer treatment already that they're doing. So it's a lot of connections because, you know, [00:19:00] as amazing as parents are, we actually meet the Facebook group sooner than we meet the researchers and the scientists for sure, for sure.

So, so when they come to me, that's my first question. Okay. Tell me what research have you done because each family is super unique. And so it's like, okay. This is reality. Have others been tested? There's two parts to this because in our case, surveillance is just as important as treatment. And so it's like, okay, when you or your child have been diagnosed with a cancer, obviously finish that treatment.

But at the same time, you have to care for yourself. And in our case, self care is get a colonoscopy or go get a blood draw because you know what, you don't want to have the cancer when you're helping your child get through the cancer. And so those are lots of things we do. We also have zoom, um, family meetings, like as a group, as a community, bereaved parents are always included because, you know, their child passed away many years ago and treatments weren't as sophisticated as they are today, even though there's no cure for the condition.

So we always include them as well because we want them to know that their loved one is just as important. Yeah, that's what we do. And in the easiest form, we have a lot of community hall [00:20:00] meetings, but then in the larger scale, when we're doing patient centered research, we have much more listening sessions of like, okay, what do you want and why do you want this?

Jessica Fein: You talked about patient centered learning sessions. One of the things that you advocate for is patient centered rounds. Can you tell people what that means and why it is so desperately needed? 

Parvathy Krishnan: So one of the most common things we hear or experience when we're in the hospital is that, especially with a rare disease, each team comes in, they're the expert in one thing, they say one thing, and then they go.

And they are the best in that plan, and we're very thankful for the expertise that they have. However, most of the times the family or the patient is left behind thinking, how does this fit into the big picture? And what does this mean for us? So at the bare minimum, patient centered care is when you involve the patient or in the pediatric case, the family as well.

For the simplest thing, if you're inpatient, rounds shouldn't happen outside your room. The entire team [00:21:00] should come inside your room, should have the presentation, whatever it is, however big it is. We've had teams of 15 people come into our room. We can make space even though those rooms are small. 

Jessica Fein: I have to just tell you how that is landing with me because when we were in the hospital for an extended period of time, we never wanted to leave Dalia alone in the room, right?

But those rounds always happened in the hall, always. I never thought about this, never once did I think I had the right to ask them to come into the room. And so this was this horrible thing because I wanted to hear what they had to say, but I didn't want to leave my daughter alone in the room. So what you're saying is so important and seems so obvious when you say it, but when you're in it, it never occurs to you.

Parvathy Krishnan: You know, unless there's a reason you shouldn't open your hospital door, if you see that teen, open the hospital door, come them in, because they're talking about your child, they're talking about your loved one. They should at least have their eyes on the person that they're talking about. And this has definitely been much more important now that my child is much, much older, much more [00:22:00] neurotypical.

He will literally say, why are they talking about me when I'm not there? And so I tell them, please come inside and he tells them, tell me what the plan is. And one of the things that people have realized is that we love our nurses. They are the absolute best, but they have to give succinct information to the physicians.

So they basically reduce their 12 hour shift into four lines of what they have to report during rounds, which is obviously the highlights and everything that we do. Absolutely, the team has to know, however, you're sitting with your child or your loved one for those 12 hours. And so there may be a lot of things you may have noticed that the nurse may or may not have noticed or included.

And so that's why it's so important to have patient centered family rounds, because when they come in and they all present, you are part of that team. And so you also get to share what your thoughts are and how you felt the day went or how you felt the last 12 hours went. But also how you want to take it forward.

So when plans are being made, that's the time, if it's being happening in a cohesive, all inclusive team, because [00:23:00] you are this front and center of the team, you, your child. When plans are being made, you can ask questions, that way you can clear everything at the same time. It works great for the medical team as well, so no one's calling back later and be like, this parent has a question about this medication you started during rounds.

That's your chance to get it. So we've even put notes outside when he's on isolation, or we don't want to leave the door open. We put a note outside that says, please include us during rounds, either come in or open the door so our child can hear you speak. Because we realize there's a lot of anxiety also that happens around him.

Like, are you not seeing something? Is something going on? Why are you not including me? And so this neurotypical child. Even for our child that could not speak, we didn't want to leave her. We knew as soon as we left there was something that was going to ding or, you know, something was going to get over and the IV was going to be, and then we would have to come in and we did not want that break in our thoughts as well because we can only hold it together for so long, so if we're standing outside and they're all saying all these medical plans, it could get very overwhelming when you're hearing the beeps inside the room, so if they're inside and they're there with [00:24:00] you and a nurse is there and a doctor is there, It's a safe place for you to share whatever you want and for you also to hear what's going on.

I'm a huge proponent for it. And then the second part to that is that if you have been in a hospital for more than a week, you can request patient centered family care routes. And that's when you say if you have more than one specialist, you can request either a pilot of care team or complex care team.

And if you don't have both of those, you can still say, request the primary care team to say, we want a care center around. And what that means is that once a week, every specialist will send a representative to the drawing board where Okay. All of them come together to say this is what we're thinking for your child.

You know, these are the goals for discharge, and this is what we want to do. And that's extremely important, especially when you have multiple teams, because each team is seeing one thing. So you kind of are like, what are each people's goals for discharge? What do you think is our quality of life? What do we think is our quality of life?

What can be manageable for us when we go home? And so for me, those care center rounds became very important when we [00:25:00] started spending months at a time in a hospital, because it was like, okay, I can't keep up. I cannot keep up with all of you telling me different things. So let's have this one main meeting where nursing tells them what they think, you know, every single team tells them, tells us what they have as goals, and then we work through it.

I think the most important part of it is letting your team know what your goals are because a lot of times those are very different from the more objective goals that they may have. 

Jessica Fein: Yeah, that's so important. And then I know you also really focus on DEI focused patient advocacy. 

Parvathy Krishnan: So when we started all of this, or when we went into this, we're first generation immigrants.

We didn't see a lot of people like us in the space. We truly felt we were the only people from our region, our country, who was facing all of this, and that so wasn't true. There were many others, but we learned in a very roundabout way that, you know, culturally, we didn't grow up learning to share. We didn't grow up learning to be open about having a genetic condition.

There's a lot of burden that comes with that, knowing that you pass this [00:26:00] on. a lot of cultural burden and it's still something we process, you know, because there's grandparents guilt, there's parent guilt, then this child is asking you questions like, well, I pass it on. And so it comes with generational, I wouldn't say trauma, but generational heartbreak of managing all of this.

And so when we started our foundation, actually, it was because my son brings the most brilliant ideas. It was, I think it was like Christmas in July. It's a big organization that they do this thing where they go around in July and they give out gifts to children in the hospital. And he said, how nice is it that some stranger thought about us and wanted to give us a gift.

Christmas isn't even our holiday, but we don't do anything for our holidays. And so one of the first things we did after we started our foundation was do a Diwali toy drive because Diwali is a huge festival. And we did that because it was basically an opportunity for us to educate and create awareness that rare diseases do happen.

It's okay to talk about it and it's okay to support. And it was pretty fascinating because it was at that time that people came out and said, Oh, we didn't know [00:27:00] that you could give gifts like toys to children in the hospital. We also had a huge influx of people who reached out to us and said, this is amazing.

Like we also have something like this. Our child has a condition. We just didn't realize that we could share it or people would want to hear about it. And so that's what sparked my engagement DEI work is because I realized that there's not a lot of people standing up there sharing. And just saying we exist because, you know, we're far away from being inclusive and everything, but at the minimum, if we stand up and say, we're there, please reach out to us, then at least we're making it heard.

So it started there, and then through so much learning and so much growing, I learned that, you know, obviously the condition that we have is genetic, but it's also based on consanguinity. And so there's a lot of third world countries where this is much, much more common than here. And I also learned that this is also quite possibly prevalent in the first nation people, but we don't know yet because there's not a lot of testing [00:28:00] facilities and a lot, a lot of treatment that has provided to them where they are.

It's not incest, or it's not consequent, but it's endogamy when you're repeatedly marrying within the same tribe, eventually your genes are also common. And so you end up having more genetic conditions. 

Jessica Fein: What's that word? I'm just going to interrupt you for a second and pardon my ignorance, but what is consen…?

I can't even say. 

Parvathy Krishnan: When cousins marry. 

Jessica Fein: Ah, and what, what is the word? 

Parvathy Krishnan: Consanguinity. 

Jessica Fein: Consanguinity, when cousins marry. Okay. Yes. I asked this because I didn't know, and if I didn't know, maybe there's one listener out there. 

Parvathy Krishnan: Absolutely. So there's where there's higher chances of consanguinity. So in the Middle East or in South Asia, that happens, but there's also where there's endogamies when you marry within your own, I wouldn't say just tribe, but within your own families, within your own city, within your own culture.

So basically the genes are in the same gene pool. There's a high chance for having conditions like this. So a lot of our efforts are now in those regions to create awareness, to create acceptance, to say, you know, you may not be comfortable telling the rest of your family that this is a genetic condition, [00:29:00] but at least you can get treated.

You can get surveillance. You can think before you have more children, there's options. We would not change anything in the world for the children that we've had, and we love them, but knowledge is power. And so my husband and I don't have cancer yet because we know we have this condition. We go through extensive surveillance and we make sure that we do everything we have to do to take care of ourselves.

And so. Even shifting the thing to like, you know, we're not trying to say you have a genetic condition. We're trying to say like, if you know you do have it, you can take care of yourself. So you can be there for your children. And so more of the work has been focused on that, supporting our consortium, because we have physicians from all over the world who are helping families that have this condition.

So the next step is going to be how do we reach out to those families and provide them the support that they need, given that it's such an ultra rare condition. 

Jessica Fein: You know, one of the things that I write about a lot and talk about a lot is ambiguous grief. And I know that you talk about ambiguous living.

Tell us about that. Ambiguous living. 

Parvathy Krishnan: Oh my god, I feel like there's this [00:30:00] whole chapter that we are just uncovering and when I heard about ambiguous grief It was the first time we you and I were in a Zoom call. I was like, oh my god This is the person i've always wanted to talk to, we were doing a prep for a conference or something.

I'll never forget It was the most fascinating thing I had ever heard and the thing with having a cancer predisposition and something that I've learned from my child again is that unlike and not taking away if you have a cancer without a cancer predisposition. But when you just have a diagnosis of cancer, you're given a treatment, it's brutal, you go through it, you finish it, you're done.

Unfortunately, in our case, it's not like that. It's not, am I going to get cancer? If I'm going to get cancer, it's when I'm going to get cancer. And so it's kind of like a ticking bomb where you're just waiting for it to happen, but you have to continue to live through your life. thinking that it's not there yet.

It's torturous. It's brutal. But it's also sometimes the only way you can [00:31:00] live through it because you're like, okay, you don't have it today. Let's just focus on that. You don't have it right now. But there's a constant ghost that says, Oh, but you may next time. You know, they talk about skin anxiety now and they talk about all of these things.

And these are all terms that have come up only now, but our surveillance protocols are just as brutal as going through treatment. And so our child gets scopes and scans every three months. And if you think about that, it's one month leading up to the scope. My child has anxiety about the procedure, about the prep, about the possibility of what they're going to find.

One month after that, we're waiting for pathology reports. We're like, okay, what did they say? How did it look inside? Did they get what they wanted to get? So you essentially have one month in between where you're like, oh, but I don't have cancer right now. Let's not forget about it. You know, it doesn't work like that.

It's a constant in our life. It's sort of like a constant ghost. And so we just try our best to say it's there. Let's see how we can live through it with it. And it's sort of like grief. It's, it's [00:32:00] very similar to. losing your child, but it's like you have this child and you have this unknown plan. You cannot plan anything for longer than three months because you never know when they're going to change a plan.

And it's a very different kind of life. It's not a life that we would have ever known how to live, but at least now we know that we have three months. 

Jessica Fein: You know, it strikes me that when you think about what you've just described, it gives a whole different meaning to trying to stay in the present moment.

And I think for people in quote unquote normal circumstances, it can be hard to stay in the present. Is there any trick you have for yourself or, you know, little mind shift you do for yourself to get yourself into the present moment and not swirling about the very, very real anxiety and fear of what's around the corner?

Parvathy Krishnan: It's the hardest thing in my life. to do, because similar to the ambiguous grief, there's a loss of everything over and over and over again. And it's [00:33:00] very real, because it's not like something I can just say, Oh, it's all in my head, or it might just be positive, it will work out. And so one of the things that worked for me more recently, besides breathing meditation, which sometimes the mind doesn't stay in one place.

And it's not that easy, especially when you have all of these thoughts going and it doesn't stop. This is the example my therapist gave me and she said, just think of it like you're stuck in tar and that's okay. Like this tar is this moment and that this moment you cannot lose it because you have to achieve whatever, you know, it's like, I don't know, carpool.

You have to go and do carpool. So that tar is carpool, and you cannot think of anything else and get through it. And that has helped me tremendously because sometimes it's like, how do I fix the world? 

And sometimes it's like, how do I get through carpool without feeling the enormous grief that my child may or may not make it to college?

And so I tell myself, like, I'm stuck in tar, and all I can do is pick up my child. And I've been staying in that [00:34:00] moment. It passes, just like other things that we've talked about, like grief and, you know, things like that. And I feel like sometimes it's just being in that moment and saying, I cannot be somewhere else because I'm stuck.

Jessica Fein: I love that because one would typically think being stuck in tar would be a negative. Yes! And here we're saying this is the best thing ever. You are stuck in tar. There is no outside of the TAR right now. Your whole life is being in the tar right now. 

Parvathy Krishnan: In the tar, I just have to do this one thing because that's, only if I do that can I get out of the tar.

Right. Just drive, drive through carpool. Let's not think about college. Let's not think about the future. It helps me because for me, it's very important. I don't like to dwell. I don't like to think of the negative all the time. I try to find hope in everything we can do. And sometimes that's very hard when you let the ambiguity of life take over.

I know we call it ambiguous, but it's also very real, right? And that's the hardest part about it. So then I had to tell myself like, yes, it's ambiguous, but no, it's real. Your [00:35:00] fears are real. Your anxiety is real. Your grief is real. Your experiences are real. But it doesn't matter if it goes right at this moment, you are stuck in this tar and you just have to get through it.

Jessica Fein: Do you ever get a break? 

Parvathy Krishnan: When my child successfully goes to school, yes, that's how I enjoy talking to you. No, we have moments of break as well, and it has changed. It has changed so much more. Like I said, you know, six years ago, I would never have been on my laptop talking to you. And so work has been the best thing that's happened to me because I get to channelize all of this into productive meaning.

And that is Is the purpose for what we do and that keeps me fueled 

Jessica Fein: if you were outside of yourself knowing everything, you know, and you came to yourself, you know, a few years ago and said, I can't do it. I can't do it. What advice would you give yourself? 

Parvathy Krishnan: I wish I had learned the tar method.

Jessica Fein: What else? 

Parvathy Krishnan: I [00:36:00] would have told myself that even though this moment is so hard, You're going to regret not having it because I don't have my daughter with me now. I know at that point I may have not understood it. I may have not processed it. So it's kind of unfair to say like, I wish I had said enjoy it more because at some moment you couldn't have enjoyed because it was just so hard.

I would have also said to continue to share more. But it's okay to share because at some point I was just like, do people want to hear this? Like, this is so depressing and scary and sad and you know, but then I would have told myself like, it's okay, talk, it's okay, share, you know, you never know, it may help someone, it may not.

And if it doesn't, that's okay, too. But just share. 

Jessica Fein: Well, thank you for that. And thank you for sharing with us here today, because I can tell you, I have learned a lot just listening to you over this last 30 minutes or so that we've been speaking. And I know it means so much to people and kudos to you for everything, but also for having that willingness to share, because it takes a lot of courage.

And I think that people really [00:37:00] will get a lot from hearing your story. And I'm just really grateful for you for being here today. 

Parvathy Krishnan: Thank you for the opportunity. And I have to plug your book in because it's one of the best, and I can't wait to bring it and get you to sign it next time. But thank you for everything that you are doing in our world.

It truly means so much to just know you as a person because you don't know how much of a ray of sunshine you are. 

Jessica Fein: Here are my takeaways from the conversation with Parvathy. Number one, give yourself permission to say this is hard, this sucks, and it's okay to make mistakes. Number two, if you want something fixed, you can do it right where you are.

You can start big, you can start small, you can even start in your PJs. Number three, you You are front and center of the team when it's your care or your child's care that's being addressed. Don't be afraid to make yourself and your needs heard and let the professionals know what your goals are. Number four, one way to stay in the present is to imagine yourself stuck in tar.

You literally can't do anything other than the thing you are doing right now. And number five, [00:38:00] there is huge value in sharing. You may wonder if anybody wants to hear what you're going through. Know that someone else is getting strength from your story. Thank you for being here. I hope you enjoyed this episode.

If you did, share it with a friend right now. And please take a moment to rate and review the show. Have a great day. Talk to you next time. 

Music: I've got the whole at my fingertips. I feel like flying. I feel infinite. I know where the kind to think along some other lines, but will be fine.

Come along now. The sky is endless. Now we. We are limitless now. Come along now. The sky is endless now. We are [00:39:00] limitless. We are limitless now. The sky is calling, calling out to me. Some new beginnings with endless possibilities. Are you with me? Can you hear me? And I sing out

Come along now, the sky is endless now We are limitless, we are limitless now Come along now, the sky is endless now We are limitless, we are limitless now Are you with me now? Can you hear me now? Can you hear me now, when I'm singing out, when I'm singing out? I've got the whole world at my [00:40:00] fingertips. I feel like flying, I feel infinite.

I know that we're the kind to think along some other lines, but we'll be fine. Ah, come along. The sky is endless. Now. We are limitless. We're limitless. Come along now. The sky is endless now. We are limitless. We are limitless [00:41:00] now.