Heather Lee (Host): Hi there everyone. Thanks so much for joining us for our Medically Speaking podcast. I'm your host, Heather Lee, and joining me today is Dr. Kara Kelly, Pediatric Oncologist, but also the Chair of the Roswell Park OSHI Children's Cancer and Blood Disorders Program. So thank you so much for being here today.

Kara Kelly, MD: Great. Thank you for having me.

Host: Let's talk about this joint venture, as we call it. It is something that is incredibly unique. They don't have this in a lot of places across the country.

Kara Kelly, MD: Correct. Yeah. We're only one of three programs nationally that combines a freestanding children's hospital, OSHI Children's, with a freestanding, uh, National Cancer Institute designated Comprehensive Cancer Center.

So the advantages of that is we're able to bring the, the best top-notch pediatric subspecialty care with all of the innovation and latest advances for cancer treatment.

Host: And talk about what else this means for the families. I mean, number one, I think of them not having to travel to other parts of the country to get really incredible care. It's right in their backyard.

Kara Kelly, MD: Right. It, it's so important. You know, before the joint program was initiated, which was at the end of 2017, uh, many of our families did have to travel, you know, very far out of state to major medic, you know, major cities in the United States for treatment that we couldn't deliver because we didn't have the, the innovative cancer care, right with the pediatric subspecialty care. If you can imagine a, a child that has been diagnosed with a life-threatening, you know, leukemia or other cancer diagnosis and having to go out of town for something like a bone marrow transplant, uh, and to be hospitalized for weeks at a time, to have to keep going back and forth for follow-up care, which could extend up to a year even longer.

And that means, you know, families would have to be away from their, um, support systems, their other children, their employment, you know, so it was just both from a, uh, the stressful situation as well as the economic aspect of having to be so far away from home.

Host: Yeah. You think about travel, hotel stays if you have to be somewhere else. I also think about, you know, you deliver the medical care, you know, the, the asp, the inpatient aspect of it, but just that little sense of normalcy for these families to be close to home, maybe perhaps have a family member come in and bring them dinner. I feel like that adds to the healing that as a doctor, you can't necessarily write that part of the prescription.

Kara Kelly, MD: Yeah. You know, absolutely. And, and to be honest, we've actually studied this in a research setting and found that families that have much more local supports, whether it's through their friend and family network as well as with the hospital supports, they have better outcomes, they have improved quality of life. So it is, you know, it's not just something that we think is important. We've actually demonstrated that it's important.

Host: Yeah, and you certainly walk the halls. We refer to it as J 12, the 12th floor of OSHI Children's Hospital, which is the inpatient aspect of it. And I, I get to work with a lot of these families and I see those moments where, you know, they can decorate their rooms, they can have a visitor, and it lifts their spirits when they're going through a tough time and perhaps a, a tough treatment.

Kara Kelly, MD: Right. Yeah. Just even having their brother or sister be able to come up and, you know, help cheer them up, play a video game together, or, you know, just having the family together is, is very important, especially for, uh, you know, before these children that are facing very long treatments, very tough treatments, it's, it's different than other medical conditions that occur.

Host: We're gonna get to the video games in just a moment because we have a really great new space at OSHI, which is allowing these children, uh, who are receiving treatment to have a little fun. But before we get to that, let's talk about some of our youngest patients. And you touched on this a little bit. Before this joint venture began, uh, some of the youngest patients for bone marrow transplants specifically, previously had to go somewhere else. Now that this program is here, what types of things are happening at Roswell and at OSHI that allows them to stay here closer?

Kara Kelly, MD: Sure. So, yeah, so before the joint program, uh, because the bone marrow transplant unit was at Roswell Park and there was no pediatric intensive care unit, there were no pediatric specialty doctors; we couldn't do transplants there for our youngest patients, so anybody under the age of five was automatically referred out of town. And other children that had really complex, um, very more challenging bone marrow transplants also had to be referred out. And so that was really the bulk of what we, you know, were, uh, patients that we see.

Um, many of the cancers that need bone marrow transplants tend to occur in younger children. So once we developed the joint program, we have the inpatient bone marrow transplant unit on J12 and again, bringing all the expertise from Oswell Park over to help support our pediatric providers at Children's Hospital, we were able to quickly start doing those bone marrow transplants, and since then we've more than tripled the number of bone marrow transplants that we perform right here in Buffalo.

Host: Yeah.

Kara Kelly, MD: And haven't had to send anybody out of the area, which is really exciting.

Host: That is incredible. And talk about your team because having this joint venture really allows you to pick and choose and cultivate this incredible team that is helping to change lives and save lives. And, and prior to this joint venture, your team wasn't quite as large and you're, you're getting the best of the best from all across the country.

Kara Kelly, MD: Right. Absolutely. I mean, you know, I've always had great physicians as part of our team here. You know, many that are you know, born and raised in Buffalo, may have, uh, left the area temporarily, but come back because they really want to stay here. Um, however, with the opportunity to expand the services that we offer, to be able to treat more children here, to participate in that very cutting edge research, we've been able to expand.

We're now up to 13 physicians that are Board Certified Pediatric Hematologist Oncologists, Cancer and Blood Disorder Specialists. I've been able to bring physicians from all of the top programs around the country. Uh, we have, uh, physicians from Stanford University in California, from Seattle Children's and in, um, in Washington state from the National Cancer Institute and in Washington, DC area.

Uh, from uh, Nationwide, that's in Columbus, Ohio from the Children's Hospital of Philadelphia, you know, on and on. Really just such a, a great team. And with that, they bring the expertise that they have from these major centers, which allows us to continue to improve the quality of the care that we offer right here in Buffalo.

Host: And I think that's important to mention. You know, you mentioned some of these bigger cities and these larger institutions, but we have incredible care right here in Little ole Buffalo.

Kara Kelly, MD: Exactly. No one needs to leave town anymore. Is really the message. You know, we have excellent, cutting edge care right here in Buffalo, and we're actually even now to the point where patients from outside of the area are being referred to us for therapies that they couldn't receive elsewhere.

Host: Which says a, a whole lot about what you do and what your team does. Um, speaking of your team, you have expanded things under your leadership. I've got pediatric experimental therapeutics. Can you talk a little bit about what that entails? It's a lot of big words. Exactly. So I want to break it down so people understand again, what is happening on the medical campus.

Kara Kelly, MD: Sure. So that program, uh, allows us to deliver, um, some of the cutting edge latest therapies for pediatric cancer and blood disorders. Uh, so it's, you know, when new therapies are developed, um, they're not rolled out to everyone right away because you need to carefully assess them, make sure they're safe, make sure they work. And so only a handful of elite institutions can offer these therapies in a very controlled and very, uh, in a way that's safe and carefully monitored.

So we now, um, have over uh, we have over 20 to 30 clinical trials that we offer uh, for our patients and including right now, there's about six of them that are what we call these early phase clinical trials. So those initial ones that you can only get at a few centers. And several of those therapies were actually developed right here in Buffalo at Roswell Park, uh, initially for adult patients.

And now we're, we're beginning to offer them for pediatric cancers, which is really exciting.

Host: Because I would imagine when you're talking about children, doses have to be different. What they can tolerate, what their needs are, all of that has to be studied. So when you talk about clinical trials, this is months, years?

Kara Kelly, MD: Oh, on, you know, average it takes, you know, for a, a new drug when it's first tested, till it's approved by the FDA and available around the country, that process can take 20 or 30 years.

Host: Wow.

Kara Kelly, MD: Yeah. And one of the things that I'm, you know, really trying to champion and change is that right now it takes, on average six years from when a drug is approved in adults to when it's available in children with cancer. So by kind of working together, we're starting to speed up that timeframe.

Host: Yeah. You want that timeline to, to be a lot shorter, because that could make all the difference when it comes to some of our youngest patients.

Kara Kelly, MD: Right. I, I did a, so I was involved in a, a very large clinical trial to help improve care for both children and adults with Hodgkin lymphoma, which is one of the more common cancers that we see in, in teenagers.

And it was the first time that we worked together that we, um, were evaluating this kind of new type of immune therapy, and in doing so, we sped up that approval process. And I estimate that because of that, we probably prevented hundreds of children from relapsing, if we had, you know, if we had had to wait the usual six years.

Host: Yeah. Because time is of the essence. And that was what was published correct, in the New England Journal of Medicine.

Kara Kelly, MD: Right. That was just published in October. You know, which, um, you know, which is great. Because that helps to get the word out not only here around the country, but around the world about the importance of this new therapy.

Host: Yeah. So folks can learn about what's happening, you know, at Roswell, at OSHI, and on the medical campus, but also I'm sure that they can learn, you know, from that and who knows, maybe contribute to that.

Kara Kelly, MD: Right.

Host: Or maybe want to be a part of that and come here.

Kara Kelly, MD: Exactly.

Host: And be a part of your team.

Kara Kelly, MD: Right.

Host: Uh, next generation cancer mutation sequencing.

Kara Kelly, MD: Okay.

Host: Break that down for me.

Kara Kelly, MD: Sure. So we are discovering more and more that it's a lot of cancers, especially in children, much more so than adults are related to, um, changes in the, in the DNA, you know, the kind of the basic building blocks of, of cells and that those mutations, most of the time they occur you know, at random, it's not something not related to an environmental exposure or what they ate or you know, what they did, but it's just these random mistakes happen. And those mistakes are important to know about because they help us determine, uh, the best treatment for patients, either by kind of classifying them into different risk groups so that we give them the right therapy. Not too much, not too little. Um, but just the amount that's needed for their type of cancer or in some cases, information from that allows us to use, um, a, a targeted drug, a drug that specifically works on that mutation. So we are now routinely doing screening of almost all patients that we're seeing right now, so that we have this advanced information to be able to design the best therapy for them.

Host: If, if there's something that's gone awry, so to speak, with those building blocks, you can, you know, maybe prevent things in the future.

Kara Kelly, MD: Yeah. And just to be, you know, we want to, again, give the right amount of therapy, not too much, not too little, uh, and this type of information is really helping us to be able to do it in a much more individualized or personal way.

Host: Yeah. Um, integrative medicine for patients and families. And I think the key there is, and families, because you're not just treating you know, the, the teen or the, the child, the adolescent, the family is going through this journey together. And I think that that is really important. At OSHI, they focus on not only the physical health of the patient, but the mental wellbeing of the patient and the parents, the siblings.

Kara Kelly, MD: Right, right. It's, you know, lots and lots of you know, research data, clinical experience shows how much the whole family suffers through this experience.

Host: Yeah.

Kara Kelly, MD: It's, you know, it's like many families have post-traumatic stress symptoms after, uh going through this journey, and so our job is to help support them in the best way possible. You know, of course we want to give them the most cutting edge appropriate, you know, cancer treatment or blood disorder treatment, but also find ways to lift their spirits, to help relieve that anxiety to, um, and to tailor it to the needs of the, you know, of the family, both the, the siblings as well as the parents.

Host: Yeah.

Kara Kelly, MD: And so we do that through a lot of, you know, wonderful ways. Um, we are so fortunate to have such an expanded, uh, support care team, and a lot of that is supported through philanthropy because insurance does not cover, you know, the costs of, uh, psychologists, um, child life specialists who are specialty trained, uh, people that do play therapy and help prepare children for surgery or for, you know, other invasive type procedures.

Host: And even in some cases, bereavement for the family.

Kara Kelly, MD: Absolutely. Right. Are, you know, in those, rare, you know, fortunately the success rate for pediatric, uh, cancer care is, is very high. You know, we're approaching, um, 80, 85% across the board and, uh, of children that are cured and some types, um, such as, you know, the more common cancers like leukemia, we're exceeding 90%.

But unfortunately we're not at a hundred percent sure and there still are some challenging, uh, types of cancers. And so we do want to support those parents and the extended family if the child unfortunately does pass. You mentioned integrative medicine, so just a, a few words about that.

Host: Yeah, sure.

Kara Kelly, MD: Um, we, we have found that many patients and families are interested in using other support services other than taking another medication. Uh,

Host: Because there can be a lot.

Kara Kelly, MD: Oh yes. Yes. And think about it if you're, if you have a 3-year-old or 4-year-old and they need to take a medicine by mouth, you know, it's not an easy situation.

Host: No, no, no, no, no. I think any parent out there can probably relate to that.

Kara Kelly, MD: Absolutely.

Host: Even just a simple Tylenol one time, let alone daily medications, large pills, a large amount of pills.

Kara Kelly, MD: Right. Many that don't taste very well, so. So we really want to use things that will help, um, uh, alleviate symptoms, but in a way, in a way that doesn't involve another medication. So integrative medicine is one, uh, approach that can include, um, acupuncture, um, or acupressure. I think one thing a lot of people are surprised about is that young, that children are actually receptive to having these skinny little needles that are involved in accu uh, puncture placed. And they do find improvement in their, especially their pain, um, and nausea and vomiting, which unfortunately is associated with some cancer treatment regimens. Uh, but we also do massage therapy, um, uh, something called reiki, which is a form of energy healing that also helps to relax um, many caregivers and patients. We use aromatherapy, which is inhalation of essential oils that also help for calming and nausea

Host: to calm them down.

Kara Kelly, MD: So we have been able to offer these services both in our outpatient center as well as on J 12 on the inpatient unit to help, uh, support the patients.

Heather Lee (Host): If we could touch on child life for a second, because we have amazing child life specialists, but one of the things that I think about when it comes to pediatric oncology patients is the port, for example. And they demonstrate child life on specialty dolls, some of the procedures that are going to be happening, whether it's an IV or a port, and it helps to prepare them and take a little bit of that uneasiness.

Kara Kelly, MD: Correct. Yes. Yes. The, the ports are these kind of little reservoirs, little cups that, um, are implanted under the skin, you know, during surgery. And then they connect to a vein and that allows us to be able to, you know, uh, draw blood samples or administer medications. But, you know, again, think about it, they're usually placed in the chest because they have to be near one of the larger veins. And if you, you know, children, if you come at them, uh, with a, a needle, which is, you know, is used to put into that cup, it's scary.

Host: It's very scary. As an adult, it can be scary.

Kara Kelly, MD: Exactly.

Host: So let alone for a child.

Kara Kelly, MD: Right. So many, you know, so we have amazing child life specialists in both on J12 as well as in our outpatient center who are just so kind and so, um, reassuring to the children. You know, I've just seen dramatic changes from children that, you know, screaming, you would've thought, um, the worst thing in the world was happening to them to, you know, within a short period of time being able to just sit there and even smile when the procedure is being done.

Host: Yeah. So I think especially some of the older kids, um, talking with some of our champion kids who are basically, they're like little ambassadors for OSHI Children's Hospital. Um, but the, the pre-teens and the teens, a lot of them have told me, we just want to know what's going on. If you tell me what's going to happen, if I know what's coming, I can kind of prepare myself, which I think is important. I think we can't discredit how smart kids are.

Kara Kelly, MD: Oh, absolutely.

Host: And how much they want to be a part of their own care.

Kara Kelly, MD: Correct. Yeah. You know, often when I'm meeting with the parents of a, of a new a patient, especially a, a teenager who's just been diagnosed with cancer, often parents want to protect their children, you know, and don't want to get into the details or even name the cancer. Um, but I've, you know, what I've told them is that the kids know they can pick up on, you know, the parents' emotions.

They know something serious is going on. And oftentimes they, they assume the worst. And so just being able to name the cancer, to have that information just makes it so much more easier to deal with.

Host: Yeah. Um, one of the other things, uh, that is relatively new to OSHI which is fantastic, is the teen room.

Kara Kelly, MD: Yes.

Host: You had a chance to check that out as well. We had mentioned video games. It's just another opportunity. It's a special teen lounge where they can go watch movies, play games. That's another part of that healing because a lot of these uh, patients if they're on, um, after a bone marrow transplant, right, have to be in the hospital for an extended period of time or leading up to a procedure, have to be there, but they can sneak out and go in that teen lounge and be a kid again.

Kara Kelly, MD: Right. A little time away from their parents.

Host: Yes.

Kara Kelly, MD: Which is important. And, and also it's a chance for them to often interact with other, other teens that are going through similar experiences. You know, they'll sit together and, and play games or, you know, hang out, do some crafts or whatever, you know, and it's just, they're not with the little toddlers and other children that are in the main play area. Uh, I recently took care of a couple of teens and, and they were just so excited about, you know, having this place. And, uh, so it's such a great addition to J12.

Host: I think there's also something to be said about another patient being able to bond with, with a patient because they really understand what they're going through. We can try to understand. Sure. Um, but we will never fully know. So to have a couple of teens together and to be able to, to chat or not talk about anything at all. Right. And just be friends and have fun. Yeah. I feel like that is uplifting in and of itself. Yeah.

Kara Kelly, MD: No, absolutely. Absolutely.

Host: Yeah. Um, we talked about philanthropy, um, and some of the things that it can do. Mm-hmm. And the things that it goes towards. Anything that comes to mind that you've been able to purchase, new technology or new space thanks to generous donations?

Kara Kelly, MD: Oh, sure, sure. So, you know, philanthropy, it helps with so many different aspects of what we deliver. You know, as I mentioned before, insurance only covers a part of the care that we deliver and one of the kind of important aspects of our program is we take care of everyone. Uh, it doesn't matter what type of insurance they have, where they're coming from, they all receive the same type of care, so, the philanthropy helps with the teen room, the renovations to that space were, were funded through that. Uh, it helps to support, um, our, many of the staff that, you know, our Child Life specialists, our, uh, integrative medicine program. Uh, it also helps to support the research that allows us to be able to bring these innovative therapies, you know, to our patients. Uh, so there's, we just could not do it without that support, you know, plain and simple.

Host: Yeah. And in 2023, the Festival of Trees, which if you haven't been, it's incredible. Put it on your list of things to do. Um the focus of the fundraising was specifically for, um, the joint venture and for this program. Um, what an incredible night that was.

Kara Kelly, MD: Oh, oh my gosh. It was such a, a beautiful night and, and just I was just so impressed by the support of our community for this program. So many people there and surprise gifts, including a very large donation from New Era Cap, uh, Foundation, which is really helping to support our J12 unit. Uh, it just was unbelievable and just really, I think, spoke to the importance of how our community recognizes how having a pediatric cancer and blood disorder program right here in our community is, is so important, so, and so special and, uh, just really so grateful for all of the support that night.

Host: And I think that there are so many people out there, you know, who will be listening to this or watching this. And they know of somebody who has been touched by pediatric cancer, whether it's in their own family or a relative or maybe a family friend.

Kara Kelly, MD: Right, right. You know, yeah, absolutely. Especially here in Buffalo where everyone seems to know somebody. Everybody, yeah.

Host: The two degrees of separation in, in Buffalo.

Kara Kelly, MD: The two, I thought it was one, but uh, yeah, so I think that knowing that, um we have the community's back to help, uh, continue to support our families, to continue to improve the quality of care that we deliver, to bring that innovation here. Um, I think, you know, the, we really want to continue to build on all of this so that no family feels that they have to leave this area to receive the best care ever.

Host: Yeah, and we've been talking a lot about pediatric cancer, but I would be remiss if we didn't talk about. Because the name of the program is Cancer and Blood Disorders Program. Mm-hmm. What falls under blood disorders and who might utilize the treatment?

Kara Kelly, MD: Sure. So the blood disorders include a, a range of, of different, very serious, you know, blood uh conditions, one of which is sickle cell disease, which is a uh, a type of anemia or low, uh, red blood cells count, which is due to a mutation, uh, that gets passed on to these children. And these, this condition leads to incredibly incredible, painful episodes where they get hospitalized because of the most intense, intense, you know, pain in bones that you can imagine, or to life-threatening, uh, lung complications where they are at risk of having their lungs shut down, or strokes, you know, this, this particular condition affects almost every part of the body.

Host: And for which there is no cure currently.

Kara Kelly, MD: There. Well, there, there hadn't really been until just very recently, um, in the last, you know several years we've begun to offer bone marrow transplants to children with sickle cell disease and that is curative, but its bone marrow transplants are a pretty tough, you know, tough procedure. And do, you know, have significant side effects afterwards.

 So what is incredibly exciting in this field is that in, in December of 2023, the FDA approved gene therapy for children with sickle cell disease. And that's where we take the patient's, you know, own blood cells, they get modified genetically in a laboratory and then they get infused back, uh, into them.

And that, uh, allows them to start producing normal blood cells. So that they no longer have those painful crises and they don't have all of the other organ complications.

Host: And for a procedure like that, what is the, what is the process? How long does it take? Is there a lot of recovery? Is it painful?

Kara Kelly, MD: Yeah, it's still not an easy process. You know, we do need to, um, unfortunately at this time, we still need to give them chemotherapy, uh, to be able to kind of clear out their you know, defective bone marrow cells and allow the new cells to be able to be reinfused. Uh, so this is a type of program that therapy that really can only be given at a specialized program like ours where we have experience with bone marrow transplant and with the type of medications that need to be given.

 Um, but it is just, you know, we are so excited to be soon offering this therapy. There's a lot of preparation for it, a lot of training, a lot of, uh, procedures that have to be put into place. But we are, um, quite hopeful and excited that this therapy will be administered to patients this year, 2025.

Host: And we are so excited that we have this joint venture between OSHI and, and Roswell. It is an incredible asset to the community and, and to Western New York. And the fact that people are now coming from other parts of the country and seeking the best care here again, really says a lot about you and your team and, and the growth.

Kara Kelly, MD: Yes. I, you know, I am just so grateful for this all star team that I have here that's really, uh, incredible physicians and nurses and support staff. And, you know, it just takes a whole huge village to be able to support children with cancer and blood disorders and, and we really have a, a tremendous team.

Host: Yeah. Well, we appreciate your time. Thanks so much for joining us. I hope to have you back in the future. Okay. Um, I know that you're very busy, but as you're working on new and exciting things and your team is working on new and exciting things, we obviously want to share that with our audience. So.

Kara Kelly, MD: Great. Well, thank you for, for having me and for your interest in learning more about our program.

Host: Yes, it is an amazing program. So you can go to OSHI's website, Roswell's website to learn more about it. Uh, we really want to educate the community about, again, this incredible asset that we have in Western New York.

Kara Kelly, MD: Exactly. Yeah. There's, you know, it's all about now you can stay local and get the best care, you know, ever. You don't need to travel elsewhere.

Heather Lee (Host): All right. Dr. Kelly, thank you so much.

Kara Kelly, MD: Okay, thank you.

Host: And thanks for tuning in.