SPEAKER_00 0:30

Welcome. This is Dr. SD Hest, and I'm Dr. Ann Kirch. And we are on and off the spectrum podcast. Tonight we have one of our, well, one of my very special people and a very special guest for both of us, Dr. Patty Kerrigan. Patty, you and I have known each other more years than I think either one of us want to admit. It goes back quite a while. I was just telling Ann we met at one of, I think, the original networking meetings way back when, uh, in terms of just people were just establishing their practices and different ideas. And you shared with me this wonderful idea and the need for services for children who were recovering from uh post-cancer, post-u-cancer of uh brain tumors, and the need for additional services, and this wonderful idea of a foundation that you were thinking about called Think Again Foundation. And so we're hoping tonight that you'll tell us more about what was the impetus to starting the foundation, a little bit about your history, where this wonderful name comes from. And yes, I'm very curious about that.

SPEAKER_02 1:48

I've been trying to figure out what it could be, so yes.

SPEAKER_00 1:53

Tell us everything and where the work is today to follow up because I'm I know our audience is interested in. But without further ado, Dr. Patty Kerrigan.

SPEAKER_01 2:02

Yes, thank you. Thank you, Esty. Nice to meet you. Um uh how did I start? I don't know. Um it's a it was a long winding road. I was a I was a special education teacher in a psychiatric hospital in Chicago, and it was Children's Memorial Hospital, it's now called Lurie's. And um, while I was a teacher for the inpatients in psychiatry, we also had two little kids that were being treated for cancer, um, and they were immune suppressed, so they they would take a cab to our classroom and go to school with with the kids that were psychiatric patients. So we had these two little kids in our class. God, this is probably 30 years ago. And um uh I I noticed that the two kids who were both being treated for leukemia had unusual learning styles. They they had a difficult time recognizing sets, you know, like on a dice, you see three and three, instantly you recognize that's six and four. Um so I called a friend of mine who was uh in graduate school at the time and he was studying pharmacology, and I asked him to look up leukemia treatments for kids and see what medications they're taking, and he he called me back and told me about methotrexate and the effects of methotrexate on cognitive development, and um, it just kind of stuck with me. And then I made the move here with my family to Los Angeles, and I started to work in the psychiatric hospital at UCLA as a special ed teacher, same job. Um and I just had so many questions about the mechanisms of learning disabilities. I was so curious, especially for post-birth uh insults to the brain that could create learning disabilities, like uh like chemotherapies. So um my uh my senior teacher suggested I go back to school. So I got my PhD at UCLA in special education, uh psychological studies and education, and I was trying to figure out how I could use that knowledge I had about methotrexate in a study, but in order to do the study, I needed like 375 kids that were treated for cancer, and that was almost impossible. So I ended up studying um Spina bipida, but then a friend of my son's friend had leukemia, and it just hit me again that I need to study this. So I started working in the cancer clinic at UCLA in the kids' cancer clinic. This has got to be 29 years ago, um, and because I know that they needed help and I was interested in that population. And as I was doing the work, I I didn't do much research because there was so much clinical work I needed to do with these kids. Um, they all needed help in school, a lot of them had learning disabilities, a lot of them had cognitive, um needed like cognitive rehabilitation and educational therapy. So then I thought, oh, I'm gonna be an educational therapist. So I started to take those classes and I was like, what am I doing? You know, I'm like, I can't, I can't do everything. So I stayed working in the clinic, but I found that a lot of our kids weren't getting the services that they needed, uh, specifically educational therapy and cognitive rehabilitation for these new learning disabilities that they had. So um I remember taking a uh a school district to court to try to fight for a special school for this little girl who had leukemia twice, a bone marrow transplant, and she was a sixth grader reading at a first grade level. And it was just she was just devastated, and she she had said her mother told me through an interpreter she doesn't want to go to school anymore, and she wishes the doctors didn't save her. And I was like, Oh my god. Um so after spending a week in court with this school district and not really winning, I thought there's only one way to do this, and that's if I start a nonprofit to pay for services for these kids. And the think again is is to help them think again, like think the way that they normally could think. And it was just a play on words, and a friend came up with it, and I said, Is it available? So it was available the URL. So I grabbed, I grabbed it, and um and and it's now 18 years later, I think. Oh wow, I know 2007. I filed, 2008 was our first active year, so it was a long time ago. Yeah. And and we've expanded, as as Dr. Hess knows, we've expanded to include brain tumors and also um kids who have hematological disorders and have gone through bone marrow transplants because that's also invasive to development. Um, I I've expanded beyond cognitive rehabilitation and educational therapy to also include occupational therapy, speech and language, whatever um the child may need. I did have a brain cancer patient, which is what moved me into things other than educational therapy, um, Emmett. He was uh he was great cognitively, but he couldn't walk. He had right side hemophesis, he couldn't get physical therapy, and his mom said, We'll refinance our home, we'll do whatever we have to to get him to therapies. And I said, Don't you worry about it. We'll get him therapies. So we got um a physical therapist to go visit him at his home and work with him, and he's now in college, so um, they don't all need cognitive uh corrections, they need physical and everything else that comes along with it.

SPEAKER_02 8:17

You know, this reminds me so much of a of a dear friend of mine whose son had leukemia, and it's the same story. Um, she had had the resources to bring in the best people, but it was the same time 30 some odd years ago, and there was nothing available. So here she could pay for people to come to her home and help, and she couldn't find anybody to do that. And you weren't doing this yet, I guess.

SPEAKER_01 8:53

So I don't know anybody else doing it, and I I wish more wouldn't.

SPEAKER_00 8:57

It's such a it's such a wonderful piece, and I will share with you as beautiful, as uh you know, one of I'm sure many mental health practitioners who you tapped to work with these wonderful kiddos and their families, the processing of the trauma of having kids. That's right, and the inability to do things that they once had been able to do, or the parents' recognition that the child was, you know, uh sitting at death's door as they interpreted it, or you know, uh and it was such it is such a powerful experience to be with these courageous families. It is it is unspeakable. These kids have have a courage that is um it's indescribable and and contagious, which is wonderful too.

SPEAKER_02 9:43

And patients will often parents will often say to me, I've worked with many mostly teenagers, I was telling SD, mostly teenagers and above, although a few youngsters um who have had cancer and been referred. And the uh I remember a couple of parents saying, I would have given up except my child hasn't given up. That's how strong they are, and and it is a remarkable thing to work with kids who don't give up, they they don't know that they can give up in many ways. So it's just what you what you're doing is just and what you've done for so many years. What has there been a toll on you? Because this is not easy work.

SPEAKER_01 10:36

Um you know, I I don't find it um difficult. Some there are some situations where, you know, like if we're gonna lose a patient at UCLA, um, that's of course always difficult, but there's also some I don't even know how to say this, some joy in in it, even in that end stage to see that family together and the love. And I really feel fortunate that I get to see real life like this, you know. Um and and and to see the fight and battle and the the strong kids and it it all it always just regenerates. Like when I we had our bowling event, we do an event annually, it's bowling for brains. We had 153 bowlers and we cape the kids, you know, we have all the kids come and we put capes on them, and it just regener re-energizes me to keep doing it. You know, sometimes I the hardest part is raising money, of course. Yeah, and I'm not a fundraiser, you know, I'm not that good at it. And um I'm I'm great at my job at UCLA and getting the kids what they need, but I'm not a great fundraiser.

SPEAKER_00 11:50

And yeah, and and it's you know, I think I have to tell you though, I will compliment you because um I've seen you working as a fundraiser and I know I know the gifts that you've done to these families. It's absolutely enormous. I I was actually wondering because over the years, I know we've mutually worked with some wonderful families. Are there any children besides Emmett who touched your heart their stories for a particular reason?

SPEAKER_01 12:23

Oh, um, well, you worked with Caitlin. Caitlin's adorable. Yeah. Um and and uh Alana, you worked with Alana. Dr. Haas works with uh some of my more difficult cases. Um and you when we need developmental psychology intermixed, and that could be what's keeping them and what's the hurdle that they need some psychological work. Um I call her in when there's some dynamics there getting in the way of them achieving things. Um we had um um oh I can't think of her name now. Remember the little girl who didn't speak, selective mutism, and uh I sent her to you for speech, but you saw her for psychology, and we finally got her through and working through all her her psychological issues so that she could speak. Um and she had a uh difficulty with her with herself, with her sense of self in her space. So she needed occupational therapy, balance issues. Um and Dr. Hess was kind of the go-to clinic where I could get the speech, the psychology, and the occupational therapy all in one place. So that was really special.

SPEAKER_02 13:41

Um were any of you children, kids that you knew of ahead of time who had difficulties, psychological, emotional difficulties, and then that made the treatment of the disease and afterwards even more difficult?

SPEAKER_01 14:01

Well, yeah, you know what? The first time you meet them and you take, I I usually try to get a little bit of history the first time I meet them, letting them know they're gonna be out of school for a good year. Um, and I ask a little bit about how things are, and you get a feel for for the family. You know, you the whole family's there mom, dad, brother, sister, and and you can tell the temperature in the home. Sometimes you can tell this kid's gonna have a hard time. Um if if mom's having a hard time, because the child generally looks to the mom for guidance on how to feel about things. And if she's not doing well, they may not do well. Um and and if they have like learning disabilities before, we have a lot uh some kids with autism um who come and with a diagnosis, and then you know it's gonna be challenging, you know, with treating them. Um but you could if if they have pre-existing learning problems, and then they have the radiation and methotrexate and recursing and and all those chemotherapies on top of that, you're gonna have a more affected child. Yeah, and it's gonna need a lot of work. So we try to sometimes do therapies during their treatment, you know, um, a lot of physical therapy for some kids, um, especially if they have a child might have graph versus host disease that it might affect the skin, so they can't stretch. Right. So if they don't stretch their arms, it's going to like stick that way, stay that way, and and it takes a lot of physical therapy to try to loosen that up for them.

SPEAKER_02 15:42

Right.

SPEAKER_01 15:43

Um, but I'm I'm getting off topic here.

SPEAKER_02 15:46

But yeah, you can generally tell pre-existing conditions and uh we need a lot more clinics around like what Esty does and what you're doing. There needs I've always felt that a lot more people who you can call them.

SPEAKER_00 16:01

Actually, that's uh a thought. I mean, I know, for example, Patty, when I travel and speak around the country or internationally, people always say, you know, can you franchise yourself out? And you know, wouldn't it be nice if we could subdivide us into different different uh cubes here? But have you ever thought this is such a needed, needed uh service to expand and certainly create something perhaps on the other side of the country that no, I don't want to give you more okay.

SPEAKER_01 16:33

I'd like to find somebody who's already done that. Um I did meet a woman who um I recently honored her at an event. She her her name is Lynette Lascala, and she founded uh her son when he was one year old, um drowned and then was brought back, but was kind of veg like vegetative and and in a hospital bed, and the doctors basically said that's how he's gonna be forever, and she didn't take no for an answer, so she traveled around the world and found therapies and um brought those therapies to a place called Napa. It's neurohabilitation and physical, I don't know what it stands for, but it's NAPA Center, and it's it's right here in Los Angeles, was the first one, and she's now have franchises all over the world. She's in Australia, England, Colorado, Chicago, Boston. She's got NAPA centers, and the NAPA center does physical therapy. It's a lot for for near-drowning kids. Um her son was up and walking um and talking, uh, and and uh when he was 11 he had an another neck surgery though that put him back in a wheelchair. But he's you know living on his own now in an apartment. He's disabled, but he has you know accommodations. He's in his he's probably 40 now. Um but she started this program, so these programs do exist. I had never heard of it. I I was happy to find it. And it's usually for like kids who have near drowning or brain injury or cerebral palsy, and she's it's it's like they have chiropractors, physical therapists, occupational therapists, speech and language, feeding therapy. It's for the more severe kids, but I was happy to find that because I've had some very affected brain cancer kids and um that that needed to go to her, but um not not too many are that severe. We've come a long way with cancer treatments, and um uh it it's not as severe as it was when I first started this work. Um overall, we have 85% survival rate in kids' cancers, which is phenomenal.

SPEAKER_00 18:57

Absolutely amazing, yeah.

SPEAKER_01 18:59

Yeah, you know, and it's great.

SPEAKER_00 19:01

So I I will tell you I have always actually been so taken by how much you're loved by the physicians who you work with. Because the that you're loved by the physicians, oh oh the docs who who you're working with, because I think they themselves know the need. They know that on some level, you know, it's so funny. I liken this to uh uh there was a uh uh we all were watching Spellbound. There was a little girl, remember, who who fell into a well, and um the fellow who had to rescue her said that, okay, I am hesitant to pull her out, right, from the well because I think her name was Jenny or Jennifer or something. And if you because I'm afraid of breaking something, and I remember the doctor behind him says, Whatever you break, we're gonna fix. Just get her out, right? And I had that image of you behind the doctor going, Okay, go ahead, break what you gotta break to survive, and we'll fix it. We'll fix whatever you gotta break, just get them out, you know, and and this is it. But I have been really impressed with these wonderful doctors. One after the other, give you a hug at these wonderful fundraising events to say thank you, because they I don't think they know that their work isn't not is not done when they hand over a child who is okay, we're movement into recovery, but there's still so much to do. Right, right, exactly.

SPEAKER_01 20:40

And and it's unfortunate that um, you know, and some of these insurance companies won't cover things, you know, and and yes, or they'll cover once a week, you know, physical therapy, and that's not enough, you know. So I'll double it or triple it, or or they'll be just copied. It depends on the family. If the family's um financially you know stressed, which they most of them are because one parent usually has to stop working in order to take care of this child at home. So there's always like a you know a financial burden for these families because they have to pay for parking and they have to pay for hotel rooms and they, you know, everything else. But sometimes it's just co-pays, and some of the families are thrilled. I'm covering their co-pays, and I'm like, it's such a little thing, you know, and they're like, Yeah, it's such a big thing for us, yeah.

SPEAKER_02 21:33

Because it's one thing off the list, right? Yeah, and it's and it's a lot, it's a lot of money.

SPEAKER_00 21:38

Yeah, eventually with everything that we're adding up. Absolutely. Yeah, I'm gonna do you see, I mean, at this point, after doing it as we talk about more more years than we care to actually add up. What do you see in front of you in terms of the future of the foundation and what do you hope to? Leave as a legacy for yourself and maybe for the next generation?

SPEAKER_01 22:07

Well, I you know, I hope to um I hope there's enough money in it to be able to turn it over to maybe a bigger umbrella uh organization like Pediatric Cancer Research Foundation or something like that, or or Leukemia Lymphoma Foundation, or um, you know, it's funny I people talk about St. Jude and they have so much money, but I've taken care of some of their patients, you know, because like I'll get a referral from St. Jude's patients where they'll just be treated for the cancer but nothing else. So then I can take over and help those kids. And I thought, well, St. Jude's, it would be nice if they had some follow-up like that. So, you know, maybe who knows. Um you know, I have a board and I I I've already discussed with a couple board members that something happens to me, this is this is the bank account. This is how you this is how you take care, you know, do everything. And I think they'll keep it going, you know, um with enough people working that are involved in it that also work at UCLA. I think it I think it would keep going. I don't care about my own legacy. I just want to make sure that these kids get the care that they need and that there might be some money there. But um we'll see. You know. Um kids are if I can keep it going. Yeah. But we'll see. Yeah.

SPEAKER_00 23:29

Wow. Well, I it's so touching. It has been a gift for m myself to have a relationship, Patty, with you and to see the selflessness of your uh of your energies. It it's just about helping the kids. No, truly. I'm I mean hats off in in every possible way. And um and and and jokes aside, we all know it's really hard to fundraise, but you do it grace with grace, with a smile, and for the kids, and and that's uh very obvious. And I and I have had because of you, countless families to um believe that there's gonna be another day and many more tomorrows for their children in a very positive way. So um as as one uh clinician to the other, I thank you in this context of working together. Thank you. Uh, but I also want to thank you for being on tonight's podcast. It's exceptional because we're here to offer parents some direction and tips, and above all else, I think hope if uh they hear a devastating uh diagnosis from themselves or their children. And uh if I can imagine when a parent hears the word cancer and their child is at stake and not knowing from one moment to the next what direction is, and then oh my goodness, there's so much more past recovery. And you have have and continue to offer them hope. So it's been truly an honor to to uh showcase your foundation this evening, and I want to thank you. And I'm Dr. Estee Hess.

SPEAKER_02 25:08

And I'm Dr. Ann Kirs, and it's just a pleasure to meet you and hear what you've been doing for the past 30 years. Thank you.

SPEAKER_00 25:18

This has been a pleasure.

SPEAKER_02 25:19

Dr.

SPEAKER_01 25:19

Hess, thank you. I want to thank you for being there. Of course, so many kids that I didn't have any place else to send them except to the best. So to you and take care of them and this is this is a mutual hug.

SPEAKER_00 25:34

Yeah, that's and I appreciate that so much. But this has been on and off the spectrum. And to our viewers, if you've enjoyed uh tonight's episode, please continue to tune in, to uh share, to subscribe, uh, and to follow us on all the social media platforms that you'll find on and off the spectrum podcast. If you yourself think you can add to the story and want to be part of a future episode interview, please don't hesitate to reach out to us. Until then, we wish everybody a wonderful good night and a safe evening. And Patty, again, much thanks.

SPEAKER_01 26:13

Thank you. Thank you. Have a good night. You too, please.

SPEAKER_00 26:16

Bye-bye.