Between the Cracks: Navigating Belonging in Cancer and Rare Diseases with Parvathy Krishnan

As you may or may not know, this episode is extra close to my heart, as my son has a disability with cancer at its center and Parvathy also has a similar experience.  After both her children were diagnosed with multiple rare/ultra rare and nano rare diseases (some of which predispose them to cancer), Parvathy Krishnan dedicated her life to empowering people worldwide to advocate for themselves no matter their location or diagnosis. She is now a Rare Disease Specialist and healthcare professional with a Masters in Clinical Nutrition. She is also an expert in Patient Advocacy and Patient caregiver education. I am honored to speak with her about her experience with her children and the intersection of cancer and rare disease.

Connect with our guest, Parvathy Krishnan
instagram: https://www.instagram.com/parvathy_r_krishna/
linkedin: https://www.linkedin.com/in/parvathy-raman-krishnan

 

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

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Transcript

Kara: 0:05

Hi, I'm Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible. And the dreams I once had for my life and family felt destroyed. Fast forward past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flair of possibility. In your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone, or stuck, then you are in the right place. Welcome.

1:14

Hello and welcome to the special needs mom podcast. If you're listening to this episode in real time, it's May 1st, which is the first day of brain tumor awareness month. And I hope that means nothing to you. I hope that you did not know that. I happen to know that because my son is a brain tumor survivor. It is not without coincidence that the guest I'm having on the show today is also touched to very much so by cancer. And a few years back, I heard about Parvathy. She's our guest today. I heard about her and heard about her experience with the cross section of rare disease and cancer. And I was like, Ooh, we need to talk because I have this, I think somewhat unique experience of having cancer be our gateway into disability, into rare. And I find that it's a little different and that matters for some reasons and it doesn't matter at all for others. I really am excited for you to listen to Parvathy. Let me tell you a little bit more about her. So she is a rare disease specialist and healthcare professional. She has her master's in clinical nutrition. She's an expert in patient advocacy and patient caregiver education. She's a passionate advocate, and I tell you, she is a force to be reckoned with. She's focused on family center rounds with a special focus on mental health. For these children who go through so much medical complexity and just have extraordinary needs due to what they have been through medically. She's dedicated her life to empowering people worldwide to advocate for themselves, no matter their location or diagnosis. In addition to her various professional roles, she's dedicated to giving back by participating in local hospital boards, industry and community groups, ensuring quality patient family engagement across various sectors. Parvathy is an accomplished leader with experience managing teams, building strategic partnerships, and working to With focus groups, specializing in DEI patient advocacy, so important. She serves as an advisory board member of the UDN Foundation and Team Telomere. She's also the executive director of the Kirshen Family Foundation, focused on research, scientific advancement, and patient family support for CMMRD, a genetic cancer predisposition syndrome. Arvindi is the recipient of the 2023 Caregiver Champion Award from the Health Union's Social Health Awards. In addition, she is mom to Yash, who's 15, and Ira, who is forever four. The diagnoses of her children include multiple genetic rare diseases between both children. Yes, you heard that correctly. And it's like being struck by lightning twice when you're in the same location and on the same part of your body. I mean, we don't know how this happens, right? So the diagnosis is include CMMRD. Which is, again, a cancer predisposition syndrome. Bardet Bedel syndrome. You might have to work with me on this one. Ospochlonus myoclonus syndrome. Factor VII deficiency, to name just a few. And with that,

Kara: 4:46

parvathy, welcome to the special needs mom podcast.

Parvathy: 4:50

Thank you so much for having me, Kara.

Kara: 4:52

Well, I'm really excited for this conversation and, you know, we were chatting a little bit before we started recording well, actually a long bit, we could have recorded a whole episode. We have a lot to talk about. But before we get into it, I want to just set the scene. I want to share a little bit about your story of being a mother to two beautiful children. So let's let the listeners get to know you a little bit in your experience of mothering already has a breadth that is much wider. Then many of us ever want ours to be. And what I'm referring to is your experience mothering Ira. And so I'd love to hear a little bit about her, her life and how you experience and experienced being her mother.

Parvathy: 5:34

Ira came into our life with a bang. We had already had our son Yash and he was neurotypical and was growing up beautifully. And so we felt, like, Oh, we've done this once. We can do it again. Boy, were we wrong because she came into this world in her own terms and it was the most peaceful pregnancy. We did genetic testing while I was pregnant, before I got pregnant, and then we didn't know anything was wrong. She had all the extra scans just because I I just felt like something may be wrong except they didn't find anything. She came into this world with six toes and six. fingers and no one knew and could not find anything in the scans. All the amazing technological scans we had had never found any of this. So we were surprised and we were like, oh, that's so cute. She has six toes in both her feet and six fingers. It's a bit weird, but okay. She was born underweight which was new. She came in at 37 weeks, which was also new because my son was born on his due date. And so things started just not feeling right. She was four pounds, three you know, had an admission in the NICU, then got discharged, then we got readmitted. It just didn't feel like the more normal experience I had had postnatal with our son. But, you know, she started growing and then she really started growing very well. And we were so thrilled to have a chunky monkey and it was around six months that I always say we were at the right place at the right time with some amazing physicians because our pediatrician said something doesn't add up. I don't feel like she's tracking very well. Let's just do an ultrasound. Also, I feel like there may be some something going on in her spinal cord or kidneys. And at six months, a really long story short, she was diagnosed. We got her first genetic diagnosis and it was Bardet-Biedl syndrome. We'll never forget. We had an amazing geneticist, world renowned. She said, Oh, your daughter's going to be morbidly obese, developmentally delayed, and will go blind. We were like, what does that mean? Oh, we don't know when she will go blind, how she will go blind. We just know the trajectory of this condition. There's no treatment. There is no cure. So, you know, do the best you can and at that point the most shocking thing for us was our child's gonna go blind and what does mean? It never occurred to us that she also said she's gonna be developmentally delayed or that She's going to be morbidly obese because she was a cute, chubby baby and everybody thought she was really cute. And that's when we found out that this condition was very different. And we organized and attended the Bardet conference. We had asked the family association to have it in Durham, Carolina. We didn't know until then that Just 10 miles away from our house, one of the largest research labs for Bardet-Biedl was happening. And so it was fascinating to know such a small world because when we asked our doctor, the geneticist who gave us the diagnosis, she said, we don't know anybody else with this condition. So it was in one hospital. And then we didn't realize that just 10 miles away from that at another hospital was where the zebrafish was growing for Bardet-Biedl syndrome. So 1st exposure at that time to rare disease to a genetic disorder to something just being wrong with our Children because our son was also having some signs and symptoms at that time. But that's a whole other story. then came to know from meeting other families and children that. You know, if you're blind, people are nicer and kinder to you, but if you're morbidly obese, they're not as much. And so

Kara: 8:34

my wow, I like feel this all over my body because we I don't know if you knew this actually, but we have partial blindness definitely vision impaired. And we also have obesity as part of our diagnosis and I don't want to call it complex obesity because not as I think we were eating. no amount of healthy eating and exercises

Track 1: 8:53

is to, impact parts of, this diagnosis. So anyhow, as you were saying, not very

Parvathy: 8:59

It never occurred to us and then it changed our entire perspective and that's what I learned I was like, lived experiences is obviously way different than what we read and hear from Medical teams, and so that was our 1st introduction to a rare disease community to understanding lived experiences. As she started growing, we started having more diagnosis added on to her. We kept saying something's wrong, something's wrong, and they would test and they would add things. Really long story short five different genetic conditions added on to her medical portfolio for lack of a better way to present it. was getting very sick. And every time we felt like we were intervening or doing things, it wasn't really fixing the problem and it was causing more problems. And so we were very fortunate that we were introduced to amazing complex care team that also had a pallative of care team associated with it.

squadcaster-6egh_1_04-16-2024_153802: 9:46

And so, when she's about 3 and a half years old she had lost a lot of weight, which was completely opposite to what you would expect for the conditions that she had. She was getting much more sicker. She was also nonverbal, but she would give us a lot of cues about things. She didn't want, like, pulling out her central lines which with a bleeding disorder that she had been diagnosed with. And so at 3 and a half our family chose to do palliative care and 2 weeks after her 4th birthday she passed at home. And so I feel like in her 4 years, she taught us way more than we had ever been ready for or prepared for. But the 1 thing she did teach us was that the entire medical system that she came in contact with. To this day, it's been about five and a half years, still remember her, still use her in all of their studies and in the work that they do. Her tissue and blood samples are in repositories for future research and for current research. And so 1 of the things that we learned from her life was, it's not how long you live, but it's how well you live and the legacy that you leave behind. And so that's what drives the work that I do. Because we had to make sense of this madness and of this chaotic journey that we had with her. It had all the highs and all the lows and it put things in perspective because, you know, I always tell myself like, gosh, I wish she was here, but do I really want to trade in her being in pain, her being unhappy, which is how it was towards the end of her life? And the answer is always no. We would always want to remember her fond days and her laugh and her giggles and her chubbiness. And so like her smile was fading is when we chose to do pallative care. So that's Ira for you in a nutshell.

Kara: 11:19

Well, thank you so much for sharing her with us, her story. And I mean, I really love the way you've recognized the value of her life is not by the length of life in which she had. And I think whole other conversation to talk about worth and all that with, living with disability, but we'll have that for a different conversation. so thank you for sharing your, and her story. And so let's turn over now to your life now. So you have your son and you are that person who has been struck by lightning. How many times?

Parvathy: 11:56

It feels like way too many to count.

Kara: 11:58

A lot of times, and what mean by that, and you, I've, you and talked about this, that you have unrelated genetic conditions that, would be rare to to have one of them right by itself. you. And so you happen to have a cornucopia, an abundance of these genetic syndromes conditions. You indicated that part of, you know, when you were supporting Ira, you were also supporting your son. And when did you discover some of his genetic diagnosis?

Parvathy: 12:28

know, it's fascinating Kara because I actually made this comment and at this point It's stuck with me as I said, if there's ever a genetics Hall of Fame we are definitely getting a small place in it because Until our children were born We actually did prenatal genetic testing even before we were pregnant or thinking of getting pregnant because we were like, you know Let's just test it and we were told you're totally fine Child will have all the Asian conditions that, you know, your metabolic syndrome, heart disease, diabetes. And we were like, Oh, like, we know what to do with that. And I feel like it was meant to be, you know, and it didn't matter what we did. We did not realize what future holds. And that's what I always tell people. I'm like. Knowledge is power, and sometimes you don't know, and we wouldn't trade anything in the world for the two wonderful, beautiful treasure that we have. But knowing is still awesome, because now we can keep them alive, or do the best we can for them. And so Yasha's Diagnostic Odyssey actually started when he was four. Simple, like blood in stools, not voluminous enough, nothing changed that, you know, we had to go get blood transfusions. And so they kept telling us, everything's okay, you know, you're just It's normal potty training, nothing to worry about. Something didn't sit right with me. And it was actually around the time that I got pregnant with Ira that he had his first colonoscopy and he was six years old. And so fortunate because we had changed hospital systems. It just felt like we were doing the same thing over and over again. And I said, you know, I completely understand, but I would not, it would not sit right with me if we don't have a second opinion. And so our pediatrician was the one who suggested it. And I said, why not? Let's try it. And we did. And that was the first time, you know, they told us it was, I'll never forget. I was the mom that was super worried. My child was getting ear tubes. Because I was like, oh my god, I read a study that shows that your IQ level of your child will go down if you get ear tubes and anesthesia. So, you know, I was that mom. Like, I quit my job so he would, all, we all can look

Track 1: 14:17

back. we can look back at parts of ourself that once existed in that world.

Parvathy: 14:21

we laugh about it because I quit my job so he wouldn't have to go to daycare and get ear infections and he got it anyway and so I went back to work and I was like, it didn't matter one bit. So when when we did his you sign all these forms for students. Pre op and all of that. They told us it'll be 30 minutes for a scope and we were like, okay And it was about six hours. And so, you know, I'm sitting in the waiting room and I'm like

squadcaster-6egh_1_04-16-2024_153802: 14:42

oh, our child is either dying or he's, you know, going to go to the PICU because everything that we had read Was our first, you know, our like our big procedure with our son So obviously we read through the whole thing and I was like everything that's written on that It's gonna happen and they're gonna tell us to you know, go to the PICU after this because he's probably Except the GI doctor came out and said, you know, we, found really, really large polyps in him that were almost blocking his colon, which is why he was bleeding and having constipation. I had to call the adult surgeon to come and help me remove them, which is why it took longer than what it was. And we were like, oh, my God. Okay, this is scary, but okay,

Kara: 15:19

ahead of time, by

Parvathy: 15:21

well, they, were trying to keep him safe and do all the procedures, but you know, they didn't know until they went in that this was the issue. Oh, how life has changed since then.

Kara: 15:30

Yeah. I was like, that would go down different now, but

Parvathy: 15:32

so this was when he was six and did whole genome sequencing, nothing came back positive at that time. Of course, this was almost 10 years ago or plus. And so we felt like, okay,. And they thought he had another condition called FAP. 6 months he would have a scope, they would keep taking more and more polyps. 8th birthday, when they went in, they found more than about 30 to 35 polyps and they said, Oh, some of them are cancerous. So the, recommended guideline would be to remove his colon so that, you know, this condition is primarily the colon and rectum. So if we take it out, We'll never forget we had a whole book that we read to him saying you have this condition if you take out your colon Everything will be fine. And so we went into the procedure and surgery thinking this is the condition 10 percent of people don't have a known genetic variance So he's probably one of the 10 percent which at that point with Ira also being in our life We were like, of course, we're the 10 percent sure. Why not? The surgery, again, like I said, right place, right time, the surgeon and the GI doctor felt like something didn't add up and it didn't feel like FAP, which is phenomenal because they were just looking at the tissue in hand. And they said, we're going to test you for one more condition. And I said, I mean, you've already done whole genome sequencing and they said, something doesn't add up. Let's just test them for Lynch syndrome. And they came back and they said, Oh, your child has this condition called CMMRD. And I was like, Oh my god, you've taken out his colon and now you're telling us he doesn't have what you think you had? We can't put it back. And they said it would have been much worse because 100 percent it would have been not only full blown colon cancer, it would have also metastasized to other parts because this is the most aggressive form of pediatric cancer predisposition. And so, I'll never forget. We were like, what, does that mean? and the first thing we said, because by then we had learned about all the conditions Ira had, and I'd found the Center for Excellence and all the researchers, so we said, okay, tell us where in North Carolina should we go for treatment? And they said, no one in the state of North Carolina we know has this condition. We're like, that's fine. Tell us where we have to go in the country because by then I'm like we'll go wherever we have to go and they said we don't know anyone in the country with your child's gene mutation. So we said anywhere in the world because you know, we're first generation immigrants. I was like we can clearly take our child somewhere else. And then that's when we found out that his particular homozygous mutation. He's the only one in the world. Yeah. are five genes associated with CMMRD, four plus genes, and he is the fifth one. And we also tested Ira, and she was also homozygous. And so it ended up being the, remained the two kids that have homozygous Epcam deletion same related CMMRD. And so it changed our entire life and our perspective to what we had envisioned. And life never looked the same after that.

Kara: 18:12

No, not at all. And so with this cancer predisposition, my understanding is he has experienced cancer up to

Track 1: 18:21

five times

Parvathy: 18:21

Yep. He has had five different cancers the colon Rectum twice. He's had two rectal cancers. He's had ampullary cancer, which if you google it's less than point, I think point 0. 01 percent or 0. 1 percent of total cancers ever diagnosed as ampullary cancer and that's That's one of the things he had he's multiple small bowel cancers as well. And they've all been surgically dealt with.

Kara: 18:45

Yeah. And as I got to know you was getting to hear the story about you going all over the world to seek the best care for your family, for your son. And I was just kind of like scratching my head, like, how does she do that? Like, how does that work? Like, All of it. So we won't give away all your secrets today, but really more, I guess I wanted to just to share that aspect. And obviously you can share a little bit about the way that you have sought and created health care for your son beyond, the local community that, you know, many of us have in our kind of healthcare system. And I just love to hear a little bit about that and the way that you guys go about this.

Parvathy: 19:21

Originally when we only had Yash, You know, obviously hyper focused mom, I was like, we're going to fix everything. We're going to get it all right. So the very first time at six, when they said he had FAP and he had his first scope, I said, I'm going to have a second opinion just to make sure this is what he really has. And so I. Went to Dr. Google and I said, who's the best scope doctor in the whole country? And one of the best was at Boston Children's and so we did our due diligence and I said we're just gonna go there for a second opinion and figure out like maybe if we go there like things will be fixed and then we won't have to worry and we went there and they said yeah, we think he may have this but there's really nothing different we're going to do here and he was wonderful and he said You can go back to North Carolina and they will do everything just the way we would here, so don't have to come. So I said, beautiful, we got the opinion, we're fine, we'll go back home. And then fast forward to when he was eight and we actually got the diagnosis of CMMRD. We came to know that there are very, very few people in the world with this condition. Less than 200 diagnosed with all five genes put together. Question was, okay, there's no one else in the world with his particular gene, but. Are there doctors who have taken care of children with this condition? Going up and down the east coast because, you know, we live on the east coast. And I was like, we can do this. It's easier. We came upon Dana Farber and we had already been connected to the doctor, GI doctor, because of the scope. In our local hospital. The care plans weren't adding up and for us, the quality of life was not leave a rectal tube in and just, you know, he'll be fine eventually. That just didn't sit right. So, our primary concern was like, we need to improve his quality of life. Forget CMMRD, forget cancer, forget everything else. Like, There needs to be a better plan for him to go back to school, to mingle in life, and not just be hospital bound the entire time. So one of the reasons we moved care was because, I'll never forget, we said, we're great. This is the plan, but this is not okay with us. We need a second opinion, and the doctor said, they're not going to do anything different. So we don't recommend you go there, and I said, I have to come back home every night. To sleep knowing that I have done everything I can and I don't feel like that right now. And so, yes, we may go there. Yes, they may not do anything different, but I still have to live with that decision. Of going there and finding that out because if they can do something different than I want to give him that chance and so It was the first time that I realized that our voice counts our voice matters and that it's okay to say We don't agree with you. You may be right and I actually told him I said this is home We are going to come back here. You are going to see us But we need to go and make sure we have done everything for our child because that's the most important thing and so One of the reasons we went there was because of that because it was a very traumatic medical admission and we wanted more answers We ended up staying there for more than four months after that, but it changed the entire trajectory going back there after that because the doctors were specialized in certain procedures that were not available at that time in the pediatric side of our local hospital. They told us we go to the adult side, but given all of the trauma that my child had had, he did not want to go to the pediatric side and. We felt like if there are doctors who have seen similar conditions before, then it's at least better to be in that radar and in that ecosystem versus doctors who are trying to learn. We are all for research. We're all for learning. However, at that point, we had two very ill children. And so we felt like at least for one child who, Can speak and who can communicate with us. It was very important to make sure that he was with the team that had some experience. Care of our other child, that was nonverbal and needed to go to other specialty centers. So, yeah, did single parenting for both our kids.

Kara: 23:03

This is kinda, funny, so it's right now, like, tax season, and I was just adding up all of our travel

Track 1: 23:08

expenses for, whatever deductibles. And I was thinking as you were talking, I was like, well, I bet you have quite a list of,

Parvathy: 23:15

never ending.

Kara: 23:16

medical travel. Anyhow we could brag about much we've

Track 1: 23:20

for our medical expenses.

Parvathy: 23:22

Or a lifetime cap. Yeah.

Kara: 23:26

how, I see you on Instagram. That's kind of how, like my frame of reference, like how much travel are you doing for medical care for your son? Maybe in a, in like a recent year, like, what does this look like for you

Parvathy: 23:37

It can be as often as you have every three to six weeks, That is if he's on infusions on an end of 1 clinical trial, and it's for drug repurposing. And so it's not supported by the company, because it's for an off label use. And that is to make sure that they catch the cancer really early is every 3 months. So, regardless of whether he's on an infusion or not, every 3 months, we have to go there at least for a week because he has scopes and scans that will basically try their best to find out as many cancers as they can. As soon as they can.

Kara: 24:04

So you're on East Coast, where is there that you're referring to?

Parvathy: 24:07

We live in North Carolina, and we go to Boston.

Track 1: 24:10

Okay,

Parvathy: 24:11

about 600 miles,

Kara: 24:13

Yeah, a little bit of a trip. Well, thank you for sharing that because I think that it's a different picture than I think a lot of us see where is like, you know I could, you know, so I'm in San Diego, I could maybe travel, you know, get a little crazy and go up to Orange County or

Track 1: 24:27

LA. But, and actually there is a mom I know that brings her daughter to it'd be CHLA. And I'm a little bit like, how does she do that? Because she also has a mere other 12 kids. So I don't understand. The math doesn't add up to me, but as we know, many of us have aspects of our life that, you know looking in, like you can't, like, you don't even understand how you do it. Like you just do it though. That's, that's the aspect of, this type of parenting.

Parvathy: 24:51

we've been asked, why don't you just move there? And one of the things, previously we could not because my daughter's entire care was here. And, physically could not have moved because she was in the hospital five days a week, every week, That was her standard. So like, which parent is going to be in the hospital and which parent's going to take care of the other things that are at home.

squadcaster-6egh_1_04-16-2024_153802: 25:09

To a point after she passed away, we had so many roots here and all of our memories and everything with her was here. We still have an amazing medical team here that still follows our son needs that he may need here. And it is, it still became home. And so we felt like if we were going to go there, we would have to start this all over again. And in a twisted way. Right now, all we do when we go there is wait for coming back home. And so it's almost like we go there for treatment, but once it's over, it's over and we can come back. And so part of the reason we continue to do this is because of that. It's like, it's worth it because once it's over, it's over and we can come back home.

Track 1: 25:44

Yeah, interesting because I feel like, you know, there's all these placeholders in our brain, sights, smells, locations that really mark us for like what happens in this particular place. Right. You can get very far away from that place, which I'm sure is very, very Very welcome. I'm going to put you on the spot for this question. I want you to think of all the things that you've advocated for, for your children and have had to do to push through what I will describe as a very broken medical system. And I want to know what comes up when you think of the thing that you're most proud of in your advocating.

Parvathy: 26:15

Oh, I think saying no. Saying, no, we cannot do this. I think it was the hardest, but the most empowering anything that I've had to do, whether it was telling them. This plan doesn't make any sense to me. And this not even far, long, long ago, this happened almost three weeks ago when we were there when they gave us a plan.

squadcaster-6egh_1_04-16-2024_153802: 26:35

And I was like, this doesn't make any sense. Like, what about this? And what about that? And it felt like we were putting puzzle pieces in front of them. Like, I was like, did you even know these puzzle pieces were there for me to then put it back together? and it wasn't until then again, it's a constant reminder, because we've done this for so long, we are almost comfortable. And we feel like we have control over the situation. And then they throw a bazinga and you're like, wow, this was not in our plan at all. And it sort of takes you back to that previous part of your life when you were like, nobody's listening to us, nobody's doing this and nobody's doing that. And, you know, even though we've been through so much and we, I feel like advocate pretty good, it was a new team. And so they were changing plans on the fly. And I said, you know, I don't think you're realizing, but we don't live here. It's not like I can go back home if you tell us, come tomorrow. I have to cancel a flight, I have to rebook a flight, I have to go back home, I also have to have a place to stay. And

Parvathy: 27:31

I was on the phone with this physician, I could see the bulb, light bulb moment for him because he hadn't even understood the decisional makings that we had to go through. And so I had to stop and say, no, or I had to stop and say, like, can you pause and come up with a plan? It's a You're telling me I have to fly back on a Saturday with my child. Who's going to follow up on a Saturday? Like, it wasn't until I had said, can you stop? Can you give us a timeout and can you come up with a more comprehensive plan? And they're wonderful. And it was just one of those things where I was like, you're not putting all the pieces together. And it was the same thing when they told us, you know, between both our children at one point, My son had an ostomy and two central lines. My daughter had two central lines, a g tube oxygen and she had to be admitted and they found out she had a bloodstream infection and they said, Oh, you've done so much. You can go home and do antibiotics. And I was like, okay, what does that mean? And they said, every four hours, this child has to get this. And I remember sitting there and calling my husband and crying because we had no nursing care. We had no support system. We have no community. We had no one else who would want to take care of either of our children because they just had so many medical things. They didn't want to break them. And I said, I don't think we can do, I don't know how we're going to do this every four hours between both of our children. And he said, we cannot. And so I'll never forget. I told the resident, I, we cannot do this. I am worried that we may mess up one of our children and we're already in the hospital with this child. So this child is going to have to stay here. And I won't forget, they looked at me and they said, oh, you've done so much. This is nothing. And I said, I am telling you,

Kara: 29:05

I'm at my limit. This is my this is where you're asking to go. Exactly.

Parvathy: 29:09

And I have to say, I am telling you, I don't feel safe doing this at home. And I felt like a failure as a mom doing that. But then looking back now, I feel like that was 1 of my strongest moments because I could recognize that not only the safety of my children was important. I also knew that it was not a sustainable model to follow. And it was the best choice of self care that I could think of at that time was, and you know, you know, they said things like, it would be so nice to go home. And I was like, of course, it would be nice to go home. Who wants to stay in the hospital room with a one and a half year old, you know, hating everything, including the bed. And we don't like anything here. If I boil it down to what's the one thing I'm really proud of, it's saying no, it's saying stop. It's saying I cannot do this because now I don't consider it a failure, but I consider it an understanding of the bandwidth and the limit that I can do my best to protect my children.

Kara: 30:02

Well, thank you for sharing. I think that really hits me. It's like simple, but so profound. And I feel like even if I look at my own journey just now, you know where I'm at, like you I've been doing this for quite a long time, but I, feel like it's gotten increasingly complex and I think that, yeah, we can handle a lot. We certainly can. There's no question. But I think we've just added more and more specialists, and I feel like This kind of makes me think, I think I might stop and paint a little picture For a school, for a specialist, for all the people, you know, so for school to send Levi home and like, Oh yeah, like, you know, he just has to finish this at home today. I'm like, well, but actually like he's booked, got physical therapy and he's got this, like he actually doesn't have the bandwidth to do that. like in kind of giving them the picture because I think, you know, people are looking through their own lens and they don't see. You know, what we, we don't tell them.

Parvathy: 30:56

They mean well, but sometimes it's like, don't understand what we are going through, and so that one small sheet of paper, I don't care if it's coloring or math, like, that's going to break us, then we're already pushing our children to do so many things that we don't want them to do. Them to do and they don't want to do. And so sometimes it's like, do I really want this or not? You know, when you spend this much time in the hospital, at some point your children they know they have to do their homework. They know they have to read up.

Track 1: 31:24

And so it's like, there are times we, have that sessions and we're like, you know, it's homework time and it's study time. And we do that. But there are times when I'm like, yes, you cannot do it. And that's okay. just make up for it another day.

Kara: 31:36

We'll have talk offline about how we handle that. Cause I literally like last night, my husband and I were walking just a real, real, very casual walk, trying to get Levi to do some movement and being like, how does this work when like, it's not his fault he misses school, but like, I don't know. Anyhow, we'll talk, we'll more on that later. Because one of the things that we, you and I specifically want to talk about way back when I, saw you across the room, I was like, I got to talk to I got to talk to that woman. She's magnetic and I can tell she's a powerhouse. I don't even remember how I heard you that it's funny how cancer is not really part of that room, even though some of us that have been touched by cancer also have rare disease. And so when I heard you have this crossover I was like, we have to talk about this one day, because I, I'm going to tell a little bit more of a kind of give a context for my background, kind of are becoming. because of some of my listeners probably don't even know the whole story, but I feel like I've dipped in the cancer experience, it's weird to say, and then we've kind of dipped out of it. We've come in and out of it. I have observed people's responses. to each phase of our life.

Track 1: 32:50

It's been interesting. So let me share a little bit of my story and then we can kind of share our, mutual reflections, whether they're the same or different. So we were first diagnosed at two and a couple of conditions that very quickly led to us learning that he had a very large brain tumor. In the middle of his head. And so we went right into surgery, went right into treatment. His particular tumor is called craniopharyngioma. It happens to be what's called a benign tumor. Now I'm sure you know this. People hear benign tumor. That's great. No biggie. Not a problem, right? Not so much. Benign simply in the cancer world, benign simply means it doesn't spread. It certainly grows. And so, our surgeons, like, yeah, any type of tumor in your brain is kind of a problem, like, unless it's truly not growing or growing so slow that whatever. But anyhow, and I think it's even interesting at the time, the tumor community for this particular tumor really called it a brain tumor. We really didn't classify as much as cancer. it was kind of in this no man's land because it's, not a traditional cancer specifically because there is no chemotherapy for it. Really surgery and radiation are the only options for treatment. So we did. And then, you know, supposedly got better as in the world saw us leave the hospital. So they thought we were better. What they didn't necessarily realize is the rare diseases or conditions that he now lives with. And so that's kind of our experience of acquired disability. So then we re experienced this about two and a half years ago when he had recurrence. I had already been living immersed in the disability community. I mean, I had my podcast, we were like doing it and then all of a sudden we were in cancer again. And so it's like I've dipped in and out of these places and it's funny because I have a lot of friends I shouldn't say a lot, there's people in my community that their kids have the very traditional cancers. childhood leukemia and that sort of thing. And their experience is so different than ours. So I want to honor that there's very, very different experiences even in the cancer community. But in our particular situation what I noticed is that the extension of care and compassion when you drop the C bomb is tenfold to when you try to explain a rare disease or condition. And. I will also say it was lovely. I'm not upset that people cared and were compassionate and extended help. I just noticed the difference of like, wow, here's my theory. I think because people think they understand what cancer is that then they think, Oh, and I know how to help.

Parvathy: 35:31

hmm.

Kara: 35:32

And I think this is my theory. I want to see what you think. is that people don't have a place in their brain to like, C M M R D, like, like, I don't know And it kind of goes in and goes out, like, okay, well, he looks fine to me. I'm laughing, it's

Parvathy: 35:46

No, it's truth.

Kara: 35:48

haha. So that's a little bit more of my backstory. And so now, you know, like we live now again in this, world where like, yes, we're still doing active scans, making sure we don't get recurrence, kind of going to oncology, but then have a whole other handful of specialists dealing with all of the medical conditions he has. So it's like this weird bit of belonging in both worlds, but then also for me not belonging really

Parvathy: 36:10

in Either, of any

Kara: 36:11

them. Yeah. right? Right. And so. Firstly what do you observe in the cancer community as opposed into the rare disease community? What do you see as like the differences of how it goes?

Parvathy: 36:24

So, like you said, I just want to profess by saying we're not taking anything away from the cancer community or the rare disease community. They both are powerhouses and they both have absolutely difficult journeys. And so not saying anyone, if it is easier or better, or, you know, It's a double edged sword because society has a view of what cancer should look like. And then there's the reality of what cancer looks like and people associate it with certain things and so when it doesn't look like that, then they're even more confused then add in a layer of Oh, but this is not his first cancer. And they're like, what do you mean? This is not his first cancer. And then they've really, you know, Lost it. It's, interesting. I'm, so grateful and thankful for the amazing research and science that's happened in spaces like leukemia where, you know, your child walks in with it and they're, they give you a 2 year plan or a 3 year plan.

squadcaster-6egh_1_04-16-2024_153802: 37:11

It's brutal. It's, it's awful. It's not wonderful at all, but they have a plan. And at the end of the plan. Hopefully they show good success rate and then you finish treatment and it's not the end of the world for them either. Like you said, there's a whole secondary long term cancer life post cancer life that they live. However, in our case. There is no treatment plan. There is no end of treatment. There is no pathway because each of these cancers haven't existed before even in our little CMMRD community where I 200 plus patients that have been diagnosed thus far, only 50 or so are still alive because by the time most of them are diagnosed, they're already stage 4 and it takes them A long time to even be diagnosed with CMMRD because you walk and you diagnosed at stage 4 cancer. They give you routine chemo. They give you radiation our cancers don't respond to traditional chemo radiation or anything else. And so, by the time they're like, oh, why is it not responding? Let's test them again. It's too late because it is spread everywhere. Our cancers are awful, but they are not. They're not coming up just by themselves. They are a result of this condition that we have. It's a genetic condition. And that genetic condition becomes a rare disease because there's very, very few people in this world who have it. And like I mentioned earlier, like my son had ampullary cancer, even without a genetic condition. If you look at the statistics, the ampullary cancer is 71. Clearly he doesn't meet that criteria because he was about 10 when he had it. And so. All this to say, we don't fit the bill, but we don't fit the bill anywhere. So we're neither in the rare disease.

Kara: 38:46

just, funny story is, I'm like, did you go to Facebook and join the Ampullary

Parvathy: 38:49

Oh, I sure did. We joined the Whipple group. We joined every single group.

Kara: 38:54

I'm like all of the 71 year olds and then

Parvathy: 38:58

have so many Facebook groups. It's unreal because we thought he was going to have a Whipple. Then they decided not to do the Whipple. And it was just, So I was like, Oh my God, does he have it? Does he not have it? Does he need it? Does he not need it? And so we feel a part of all the groups, but then we also don't feel a part of any of the groups because even within our community, each of the children or, young adults diagnosed with CMMRD, each person has a different cancer. And so even within our own community, my child's the only one with ampullary or small bowel cancer, but there's few with brain tumors, right? Like, Glioblastomas and then there's some with lymphomas and there's some with leukemias. And so even within our own community, every single person has a different experience. And that's what has humbled us the most, because we've now realized that we're all having different pathways, but the end of the result is, it doesn't matter. Nobody understands C MMRD. Nobody understands the cancers we go through because even if our children do have something like a leukemia, the treatment plans are so different because, our children can get multiple cancers at the same time. Many members of the family can get cancers at the same time. And what people don't understand is it is not a sprint. It's a marathon. And our marathon never ends. And I think that's where we are most similar to the rare disease community because most rare diseases don't have a cure. You know, 95 percent of rare diseases don't have a cure and neither does our condition, even though the cancer may or may not have a treatment, it's not necessarily a cure for the condition.

squadcaster-6egh_1_04-16-2024_153802: 40:24

And so, when we share that our child has a cancer, you're absolutely right. We are thankful and we appreciate all of the sympathy and the empathy that is shared, but they still don't get it because they're like, But we thought it was fixed and we're like, yeah, this is a new one. And they're like, but he looks fine. So how is he supposed to look to you if he had cancer? Like, how would you know? He doesn't

Kara: 40:49

how do you respond?

Parvathy: 40:51

It's interesting. It depends on how much, how much patience and bandwidth I have for that day, to be very honest, because sometimes I'm like, yeah, unfortunately it's. genetic condition and I go into it and I, share that, you know, we found it really early because then they're like, Oh, but you know, he's not lost hair or he looks fine. And they don't understand that his first line of treatment is either surgery or immunotherapy and you don't lose hair. There's lots of other things that can go wrong with immunotherapy, but that's not one of it, but that doesn't mean that he's not as sick, or he doesn't have complications, like I said, it's a double edged sword, like, The societal norms of what cancer treatment should look like is different than what we actually experience in the same way. What we experience is absolutely unrelatable, even sometimes within the cancer community. And so, like you said, I'm here and I'm there and I relate to this and I relate to that, but I also don't relate to either sometimes because I'm just like, we're still so unique. In our family, until our children were diagnosed, none of the adults knew we carried a gene that caused these conditions. Now, after our children are diagnosed, we have 5 adults who have this gene that predisposes us to cancer. You know, so we're considered previvors because of our children. I didn't even know that term so we're considered previvors because we don't have cancer yet. But we don't have cancer because our children got diagnosed before we did.

Kara: 42:15

a previvor.

Parvathy: 42:17

So not survivor, not fighter, we're previvors. It's like we're waiting for

Kara: 42:21

Yeah, like we're waiting for you to be the survivor. Like side. It's just a matter of, wow. And

Track 1: 42:27

well for people that perhaps, aren't familiar with cancer. Like for you and I think we share the common experience where it's like people from, this is from what we experienced globally as in a generalization, certainly not from everybody, but it's like when your child has cancer, you either treat it and get better, or your child dies. Those are the two options. and it's interesting how I find people very interested in asking about how's the cancer? How's the cancer? How's the cancer? When then I realized like that is the least of my problems. Like that is the least thing I am worried about in Levi's care right now. Are those tumors growing back? I microwaved his brain. Just kidding. I mean, not. But I did. You know what I remember distinctly, I think you'll relate to this. Since you had to take your son's colon out is, you know, when I was sending him into his first proton-beam radiation treatment, there are signs everywhere, danger, danger, danger, Do not literally do not enter. And I'm leading my son by the hand. Come on in here, baby lay in the table and it felt so wrong and I, joke, I microwaved his brain. Clearly we treated him and we needed to do that, but like it sucks. It sucks to have to, and I actually want to do an episode on this one day, having to hurt your child to help your child because it's a kind of cruelty to us moms

Parvathy: 43:51

We knowingly do it. Like I said, every three months we do a scope and every time we do anesthesia, the risk is just the same. And so we're knowingly asking for this to happen, but hoping that we find the cancer soon enough because it's like, which one's worse? Like, letting the cancer grow or taking the chance on anesthesia? And it's, torturous. And you know, people only more recently, I would say in the last, like, maybe three to five years are talking about scanxiety and, chronic stress, but this is something we've been experiencing for 10 years and this is going to be for the rest of our lives. And so that perspective is just so very different as well.

Track 1: 44:27

Okay, so what I think we've established is that both you and I fall or we experienced kind of feeling marginalized in several different communities. And I, I know absolutely this is not. An isolated thing to our experience or to the cancer and or rare disease. Like I think this happens everywhere. And the reason I think this is an important conversation and one that I wanted to have with you is, okay, so you feel part of the group and not part of the group at all. So then how do you move forward to have community, to feel like you belong and to connect to people in a way that enriches and is a value to you? Mm

Parvathy: 45:07

Personally, I think the connections is what has kept me going because I think that I don't belong anywhere, but I also belong everywhere because of it. If we take out our diagnosis and if we take out our you know, it's cancer or rare disease or CMMRD or the ampullary cancer, if you take out all of that, what is left behind is a lot of trauma, a lot of need to find answers, a lot of a need to fill in the blanks and what I've realized was that these are common themes. If you take out the diagnosis across the system, if you just isolate the experiences, they're absolutely the same or very, very similar that we can actually learn from each other. Like, oh, well, like, I didn't know my child needed pelvic floor therapy after he had major colon surgery. I didn't even know that was needed, but it wasn't until I was told that and then now I tell everyone, I'm like, if your child has any abdominal surgery, please go ask for pelvic floor therapy because that can actually be the most momentous, instrumental thing in long term rehab. And so it doesn't matter why they had surgery, whether it was, I don't know, appendectomy, which may be much more common than cancer surgery. Those are nuggets that I wish I had known while going in, but no one else had that experience, or maybe they did and it took them a while. And so for me, these connections have meant so much because when my daughter was with us, she had many more needs. Everything from special equipment to CAPC to nursing care to, and you know, we don't have that need right now, but we needed it then. And. It felt so isolating to not know who to ask to. And so reaching out to, influencers like you, or, you know, listening to podcasts, it was just like, oh, I don't have any idea what this condition is, but everything this mom or dad or person is saying actually will help me was the most emphatic thing that worked for us because it was like, okay, I don't care who this person is, but at least they're giving me one nugget that can help. And so I feel like that's the part that has bound us together, even in within our own community. Yes, we all have different cancers. Yes, we all have different ages and stages of children, but, the common theme is that no one else gets CMMRD like we do. And so for whatever it's worth, at least we have that going for us. And so we try to find common threads, you know, grief, anxiety those just human emotions. Those, like, you know, the anticipatory grief, the, the actual grief, the stress, the

47:40

inability

Parvathy: 47:40

to have medical professionals, like, understand your condition. Like, those are all common themes that are so valid across all all of the conditions that we experience. And so for me, that's been the most emphatic thing of having the community in general, whether it's the rare disease community or the cancer community. I think these are what bring us together.

Kara: 47:59

So beautifully said, and it makes me think back to, I used to do a lot more talking about this actually of, why we tell our story and, that's the thing exactly said it when we share a story, we connect because we have the same human emotion, not because we had the same thing that caused the human emotion, but this is how we connect.

Track 1: 48:19

And I think you just described it so beautifully and, and ultimately what I'm hearing you say is that. Don't pay so much attention to like the details, but find those common threads of what, what does feel connecting and what does have you feel known. And, and almost like, I mean, I think this is what I do. I think what you do too is like almost decide, okay, well, we're still part of this club, like we don't exactly fit, but, we're still coming.

Parvathy: 48:42

We're volunteering ourselves. We're voluntelling ourselves to be a part of it because I think that everybody else in the club can be so valuable to us, just like we can also be valuable to them.

Kara: 48:53

and then kind of transitioning to the value of, sharing stories is, you know, I get to see pictures, you should post some pictures of you and your son. Like I said, flying all over doing the appointments and this one's that's sticking out in my mind is your son in a room. What were the pictures of it? Wasn't like cutesy cutesy was like more mature decorations. Do you remember this? This is just recently Do you remember this picture? I commented on it. At Least it's not like rainbows and daisies. Anyhow, the picture in the room that you had showed was like a more mature child's waiting room. And I appreciated that because like when Levi walks in and it's like

Track 1: 49:29

dory, like, yeah, like,

Parvathy: 49:32

I'm going ancient.

Kara: 49:33

yeah. Right. But, you know, the, the, the fish themes are always nice, but, Well, I mean, I'm sure you and I both have a million selfies with our sons

Track 1: 49:42

as we go to all these doctor's appointments. And so I get to see you living the same life that I'm living. And I don't, you know, necessarily think deeply about it, but I'm like, she's living my life. I'm not alone. And even I think on Friday, I was contemplating this. Like, I know that there's so many moms doing exact same thing I'm doing. And that for me really helps me. But I want to ask you an aspect of this. So I shared with you earlier that Levi and I are on our seventh consecutive day of having a specialist and or other type of therapy appointment for him. Friday he was over it. Today's Tuesday. He's super over it. And I wanted to see how do you support yourself and your son to Like from the emotional mental health aspect of this, because I think one way you and I describe it is like, it's hard and it's not fair, but yet we still have to do it.

Parvathy: 50:32

It's not and I think it has evolved and changed and it continues to evolve because we started this when he was six and It was so much easier to give like a spider man or an iron man to him and entertain him or feel like oh you did this You got a prize so much more different when they're 15 and they can talk back to you and they can tell you things that they can fight with You and they can be like, I don't understand why I'm not the first case and I completely relate to what he's saying so I It was very difficult because I was like, I know it's not fair for you to have a 2 p. m. appointment. I completely get it, but I also then went on to say, but you know, the babies they need to go first. And he goes, you tell me I'm your baby? And I'm like, you are, you are, and it's not fair. And he said, it's not fair to me that they're babies. They should have me on another day. And it was then it became even harder because I was like, you know, how do I fight with logic? Why should I fight with Logic? Because he's right. So then I started saying, It completely sucks. I don't know what else to say. And then it really blew me over because then he started fighting with, not fighting, but he started defending himself with the anesthesiologist. And he said, I don't understand why I have to be NPO after midnight if I'm only going to come at two o'clock for my procedure. And

Kara: 51:45

I appreciate him fighting on this.

Parvathy: 51:48

me being this mom who's like, let's not create confusion, let's just get this over with.

Kara: 51:54

Everyone stay calm.

Parvathy: 51:55

I was just like, we're here, you're going into the procedure, I need them to be not mad at you. And it was surprising because they did say, they were like, yeah, you're right, you don't have to be, you just have to not have anything until 8 a. m. in the morning. The thing is, it's not like he wanted to have anything anyway. But He wanted them to know that it's not fair.

Kara: 52:13

Justice right? like not about the muffin in the morning. It's about the justice of it.

Parvathy: 52:17

like I should be allowed to eat if I want to eat, like, you should not give me the same criteria as a six month old who's going at 6 a. m. in the morning, which I appreciate it, but it was just one of those things where I feel like it's really hard as time has gone and The more he realizes that this is something he, I mean, obviously, he knows that this is a condition he has and this is surveillance and this is this, you know, it, always weighs very heavily on me when he says things when bit younger, he, he was watching, you know, we're in the oncology clinic all the time and he was watching somebody ring the bell and very poignantly turned to me and he said, Oh, I'll never do that. And I said, what will you not do? And he goes, ring the bell. I said, why? He goes, because I'll always have some type of cancer. And that hurt me to the core because I was like, you really understand your reality. And I wish I could have protected you from it. But I also know that that is not sustainable. And that's not not real because some point the bubble, it will break. And because of the complex journey we've had with both our children, he has always known everything about palliative care, hospice, medicines, life, death, and you know, it's, it wasn't by choice and we could only protect him so much. And so I always tell our oncologists, you know, I know that you will find a cure for cancer. I don't know how we will treat the emotional, mental, and traumatic experiences that he has had, those are very, very hard to replace, forget, or move on. And that is a constant struggle, both for me and for him, because it's so hard to disassociate from bad experiences that we've had. We've seen life, we've seen death, but we've also seen him thrive. When we started this journey, he was a big Harry Potter fan. Like, that was his, like, rage. He's read those novels so many times, and I always tell him, I'm like, you're the boy who lived. You know, we, keep saying that, and at some point I stopped saying it because I was also like, it's not gonna define you. It's okay. When our daughter passed away, I was like, you don't have to be the boy who lived. It's okay. You still make a mark, you know? And, and I don't like that we had to change our own narrative, but I also realized that we don't live with labels and we don't want to, because it's very hard wether you know, he's asked me questions like, well, I have kids without this condition, you know? And it's always like, why are you asking me this? You should ask the doctor this because I would much rather they share it with you than I do. We've also learned like I said, the power of no, we've also learned to work with the medical team. Not to be the bearers of bad news anymore.

Kara: 54:48

Oh, so in your family, you've made sure that you're not the one that has to share

Parvathy: 54:52

None of us would. The

Track 1: 54:53

oh

Parvathy: 54:54

team would.

Kara: 54:55

okay, clever, like children literally can't go to certain restaurants like they're mm,

squadcaster-6egh_1_04-16-2024_153802: 55:01

that

Kara: 55:02

is, is the one,

Parvathy: 55:03

Yep. We, cushioned him for so long because everybody felt like we knew how to deal with it and we knew how to do it. And at one point I felt like, why am I the one giving him the bad news? I am processing it myself and I don't want to know it before he does.

squadcaster-6egh_1_04-16-2024_153802: 55:19

I want to do it with him because I want to grieve with him. I want to be upset with him. And it was really weird because the last time we got bad news, we got it at the same time and he looked at me and he was like, are you okay? And I'm like, are you okay? Because he realized that I hadn't known it as well. And so. It was in a way calming and it's sort of the bomb that I needed because I was just like, tell me what you think and he was much more analytical and logical than I was because I was a hot mess. And I was like, well, I'm not going to project it on you, but I'm also glad that we came to know about this because I think it also changed the relationship that we had in that space. And, you know, they're the professionals. And we strongly started feeling that we should leave it up to the professionals now to share it as he grows older because at some point he's going to have to take over his own care. And if we don't empower him to. hear these kinds of things, then you can't then say, Oh, now you're 18 and they'll basically not let us in the room unless he tells us to. And of it was that. So I think that it has changed over time and it's the hardest thing to do as a mom or dad, to, parent differently. Because the child's still the same to you and the diagnosis is still the same and the consequences and the questions and all of that that you have still don't change because your child's growing older.

Track 1: 56:37

Yeah, very much so. I'm thinking of the, positive benefit of you learning new diagnoses alongside him is that he gets to experience your actual emotion, whether it's good, bad. I mean, I don't consider them good or bad, whether it's crying or whether it's laughing or whether it's nothing at all which is so important for our children to witness our

Parvathy: 57:00

I don't want to be strong anymore.

Track 1: 57:03

Yeah, exactly. And I think it's so programmed. Like I am like, okay, you don't have to be strong. Like you can let your kids see your emotion, but like it is, I mean, I have like 43 years of like programming of hide it all.

Parvathy: 57:15

we to show the we want to be the best for our children. And it took a lot of therapy to say, your child needs to see you break down because he's asked questions, you know, because he's seen us deal with our daughter's death and he's asked us things like, will you cry if I die? And Why are you asking me this? Because we've had to stay strong. And so I was like, well, I cried. He was like, you did? I was like, yes, a lot. And was like, oh, I didn't know you had a doubt, but of course I would cry. So I do think that it's very important, age appropriate, of course, like depending on where your child is or how your child is of those emotions, you know, then I think it, does validate as they grow older for them to see that this is okay, because I don't want him to grow up with the false interpretation that every diagnosis he has to be strong, he has to be real, he has to know that it sucks and it's not fair and it's not right, but it will be something he can overcome.

Track 1: 58:02

I feel like distinguishing. The necessity of having to do something and that it does require you to be, maybe the word is have grit or be resilient. And like, it requires something of you. There's no question. But I feel like we have this picture, at least in America of like being strong means like you do it and you look like nothing's happening, you know? And I feel like disassociating that expectation that. culture puts on us and we put on ourselves. I think that was like, well, there's something there that feel like would really help in our next phase, you know, because I think we're both parenting teenagers and different than when they were little and,

Parvathy: 58:39

culture of cancer especially is that if you're strong, you can beat it. And you're going to win this and you're going to beat it, which I, commend it. I think it's personal. Some people are driven by it, but I think in our life, we have seen so many very, very close peers our child or our own that have passed away and so it, you know, it doesn't mean that they have failed. It doesn't mean that treatment failed. It doesn't mean that the disease won you know, we don't believe in any of those labels anymore because it sucks and it's, it's not fair and science hasn't caught up yet and that's why we need to do more because we shouldn't be hearing more people die and we should be doing more for it, but I don't associate it with strength. I don't associate it with win or lose. I don't associate it with fighting or not fighting because I think that, you know, Innately, as humans, we all want to live. We all want to live positively and, you know, be healthy and happy and all of that. And when you have something like this that is not under your control, you know, it's not like our kids were smoking or drinking alcohol or having cancers related to that, which still exists in the world. And it's just as important to that, but none of these people or none of these cancers that they're getting had anything to do with it. And so when it's not in their control to prevent it, it's also not in their control to fight it or beat it or, you know, win it. It's just, has science found the cure yet? Or has science worked enough? And if it hasn't, then that's what we should be focusing on.

Kara: 1:00:03

I think zooming out bigger picture is like not trying to control that, which is uncontrollable. And really focusing on what we can control. And so I want to wrap there. I feel like that's a really good place to wrap it just on that, concept. I do want to just make sure that you've gotten to share anything that feels important for you today. If there's anything that's on your mind that you want to share as we do wrap up.

Parvathy: 1:00:25

I will just give you my most favorite quote which live by in our life. Be found even in the darkest of times when only one remembers to turn on the light. It's Harry Potter. Dumbledore said it and was one of those things that really stuck out. Sometimes the light is within you. Sometimes it's outside. Sometimes you need help. And that's but it can still be found.

Kara: 1:00:44

And that speaks so much for community too, as far as turning on the light. So there's so much we could Thank you, so much for this opportunity for sharing yourself, your time, your story with us. It was an absolute pleasure and

Parvathy: 1:00:58

likewise, thank you.

squadcaster-6egh_1_04-16-2024_153802: 1:00:59

for inviting me and for sharing our stories together.