Living Fully: Supporting Children Through Cancer

Podcast Transcript

Speaker 1:

Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now here's today's host.

Dr. Seth Rotz:

Welcome back to Little Health. I'm your host Dr. Seth Rotz a pediatric hematologist oncologist at Cleveland Clinic Children's. Beyond survival, how do kids with cancer truly thrive? Today is part of our season on pediatric cancer and blood disorders. We'll discuss ways children can maintain normalcy and live full lives during their cancer journey. Our guest today is my colleague, Dr. Matteo Trucco, a pediatric hematologist oncologist at Cleveland Clinic Children's. Welcome to Little Health Dr. Trucco.

Dr. Matteo Trucco:

Thank you for having me, Seth. It's a pleasure to be here.

Dr. Seth Rotz:

Can you, um, tell our audience a little bit about, uh, what you do and what you specialize in? The types of patients you see?

Dr. Matteo Trucco:

Sure. What I, uh, specialize in clinically is kids with bone and muscle tumors, um, called sarcomas. I also specialize in rare tumors, um, mostly because sarcomas fall under rare tumors. And then the other hat I wear is I develop, uh, clinical trials to test new treatments to care for, um, these kids.

Dr. Seth Rotz:

Our topic today is how do kids with cancer truly thrive? And that's a big topic. One of the things I wanted to start with is talking about balancing aggressive cancer treatment with trying to maintain, you know, some sense of quality of life and normalcy for children and, and trying to figure out how those things can balance or how those things get out of balance. Do you have a general approach to how you think about those things when you're coming up with a treatment plan for patients?

Dr. Matteo Trucco:

Generally, yes. I try to tailor things more to the patient. Each patient and each cancer, quite frankly, is, is unique and it is, it is a balancing act. The treatments we give to our patients are some of the most aggressive treatments, uh, as you know, that we give to any patient. And you know, if you tell a, a patient and their parent, you know, you have cancer or the kid has cancer, you know, how do you go back to a normal life after that? And you, you can't exactly, "Okay, we're gonna go pick up some milk now." We need to be aggressive to take care of the cancer.

Dr. Seth Rotz:

Sure.

Dr. Matteo Trucco:

But at the same time, we can't, you know, ruin the patient's life. Um, so it is a balance. Some of the things we do is try to get a sense of what the patient's preferences are.

Dr. Seth Rotz:

Mm-hmm. Mm-hmm.

Dr. Matteo Trucco:

For example, you know, most people like to sleep in their own bed. So we have developed a way of giving a lot of our chemotherapy in the outpatient setting in our clinic so that then at the end of the day, they can go home and sleep in their own bed, eat their own food.

Dr. Seth Rotz:

Sure, sure.

Dr. Matteo Trucco:

But there's actually some patients that don't like that, they're more uncomfortable (laughs) at home.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

They would rather be in the hospital. And so we have, it's nice to have the option.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

And we kind of give them that. And then I tell my patients, "Yes, this is the schedule, but we have some wiggle room, so let me know if your birthday falls on the day you're supposed to get the most nauseating chemo, or you have a dance or a trip or something." We have a little bit of wiggle room and with enough anticipation we can kind of either slightly postpone or anticipate, uh, giving the chemo so that that special event in the patient's life can still happen and the patient's in a pretty good state of health.

Dr. Seth Rotz:

Yeah. And I've seen, you know, your team and, uh, incredible, um, nurse care corners you work with, they are always putting together calendars for patients with holidays and special events. And, um, you know, wh- whenever we're taking care of one of your patients in the hospital, we can see that all that's been thought out. So it really seems like you have to find out where patients and families' priorities are and, and try to work around that. You know, going after the cancer is priority one, but there's a lot of leeway in terms of how you go about that and trying to meet families where, where they're at and figure out their priorities and come up with a plan, you know, together to make things as normal and comfortable as possible.

Dr. Matteo Trucco:

Exactly. And, and it is really a team effort. 'Cause again, the expert on the cancer hopefully is us. The, the expert on the patient is the patient themselves and the parents. And so we work together.

Dr. Seth Rotz:

And I think we'll get into this a little bit more later, but you know, you mentioned that it's teamwork and it's, you know, it's a physician and it's a patient and family, but also there's a lot of other folks that help yourself and other oncologists treat patients. What are some of those other members of the treatment team? You know, kind of what are their roles? And what are some of the other support people that are really helping families to get through things and, and to provide some sense of, of normalcy?

Dr. Matteo Trucco:

Yeah, so it, it takes a village. I mean, first and foremost, the nurses, be it the ones in clinic on the inpatient unit, they're the ones at the bedside. They're the ones spending, quite frankly, the most amount of time with the patient.

Dr. Seth Rotz:

Sure.

Dr. Matteo Trucco:

And they get an, you know, they try to kind of pair up and always follow the patient along in treatment. So they really get to know the patients well and know what medicines work for them. So chemo causes nausea. We have a bunch of medicines that work for nausea. We usually grab the one that's most common, but every patient's a little different. And so maybe this medicine doesn't work for him. Maybe this one does. Maybe this patient prefers the liquid version, this, the pill, the IV version. So the nurses are incredibly useful from that standpoint.

Our child life specialists are incredibly useful. They understand childhood development way better than I do (laughs). And they know how to talk to, to kids in a non-threatening way. And you know, be it with art therapy, music therapy, they get a whole lot of insight from the patients and the parents that, for whatever reason, they're intimidated or it just isn't something that they'll discuss with the, the physician, the clinical team. And so they're incredibly helpful in that regard.

And again, they'll meet the patient where they are. There's some patients who music is their life. Great. Music therapy. Some artists, art therapy. We have therapy dogs and that's incredible 'cause a lot of these kids miss their dog when they're in the hospital and that that's a great thing. So they've been incredibly, they are an incredible value, incredibly valuable part of the team.

Social workers, incredibly helpful to deal with all the other stuff that affects medicine, but isn't medicine itself, be it lodging, be it transportation, paperwork with insurance, with jobs and, and, and all those things. So they are incredibly valuable. And then we're fortunate to have a clinical psychologist specifically for cancer patients who, again knows the, the subtleties and the nuances associated with the me- mental health aspect of a cancer diagnosis in a pediatric patient and also working with the parents. So they're incredibly, uh, helpful.

And then like everything, our pharmacists meet with the patients to go over drugs. The secretary at the front desk, I mean, they, they all play vital roles in, uh-

Dr. Seth Rotz:

Absolutely.

Dr. Matteo Trucco:

... making this as easy as possible for the families.

Dr. Seth Rotz:

Yep. When you have a, a newly diagnosed child with cancer, a lot of those families may have no experience with cancer or maybe they've had a, another relative, maybe somebody who was a little bit more elderly dealing with cancer. And you talk about what treatment looks like and what some of the side effects of the medication look like. What are, what are some of the common side effects of kids undergoing chemotherapy, or radiation, or having large surgeries? What are, what are some of those side effects and what are some of the things that you as a physician do to try to make those side effects as, as tolerable as possible? One you mentioned was nausea a little bit ago, but are there some other examples you might have?

Dr. Matteo Trucco:

Sure. The first one that we, we kind of try to address up front is a lot of kids are gonna lose their hair.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

It's, it's just a thing and it's the most obvious one and it affects, usually the teenage girls a little bit more, but I, quite frankly, some teenage boys, some younger boys (laughs) are, are really impacted by it. So unfortunately, there's not great strategies to avoid that.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

We reassure them that their hair will co grow back. There are, you know, programs to get wigs for them. If there is any way that we can tweak the chemo to avoid it, we certainly do. But there aren't many instances where we can do that. That's one. There are these ice caps, uh, quite frankly, I haven't seen them work terribly well, but some people, if they are interested, we explore that. One thing we do is, as you mentioned, we an-, we anticipate the side effects. And I think that is, that comes with experience that comes with being able to sub-sub-sub-specialize. While we're all trained in pediatric hematology oncology, you know, I'm blessed by the fact that I can focus primarily on these sarcomas. And so I've kind of developed-

Dr. Seth Rotz:

And I'm blessed that I don't have to.

Dr. Matteo Trucco:

Exactly. (laughs)

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

And I'm glad I don't have to do what you do. Uh, so that allows you to get s- just a deeper familiarity with the, with the drugs. And so you can kind of anticipate things like, "Yeah, I know y- y- you'll probably be fine initially, but eventually you'll have these side effects. Or I know this surgery's gonna be rough or this radiation's gonna be rough." And so you can try to stay ahead of things and it and warn patients of it and look for these things so that you can intervene before they become problematic.

The other thing is just having a lot of tools in your belt. We have great anti-nausea medicines now, for example, but they don't work for everybody. And so, okay, either reach into what is available for adults and try to get permission to give that in kids. That's some, is something that we sometimes do. Another thing is re- using some older drugs that have been kind of passed up because we have newer better drugs, but some of them still work.

Dr. Seth Rotz:

And Yeah. And some, sometimes that's the right drug for the patient.

Dr. Matteo Trucco:

Exactly.

Dr. Seth Rotz:

Yeah. Yeah.

Dr. Matteo Trucco:

And so just that flexibility is helpful. And talking to the patients again, what works, what doesn't, checking in with them.

Dr. Seth Rotz:

Constant dialogue.

Dr. Matteo Trucco:

How is that medicine working for you? Because they say, "Ah, yeah, it's fine." "Okay. How often are you throwing up?" "Uh, four times a day." That seems like a little much.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

I think we can do better.

Dr. Seth Rotz:

Probably do a little better. Yeah. Yeah.

Dr. Matteo Trucco:

The, the surgeries, so, for example, with bone and muscle tumors, there's a lot, big surgeries to surgically remove the tumors, which take out big pieces of bone. A lo- most often we're able to save the, the limb. Sometimes we're not. So amputations. Talking to people ahead of time, there's actually some medications you can give before surgery that help prevent a lot of the side effects after surgery. So we do that. And another thing, for example, kids get sores in their mouth with some chemo. There's some medicines we can give to, before the chemo to minimize that side effect. So again, it, it's trying to stay ahead of the symptoms is often, it's easier to prevent them than to treat them when they happen.

Dr. Seth Rotz:

Yeah. And I mean there's a learning curve for physicians and patients. You know, you might have a patient who's gonna get eight cycles of chemo, you know, you do the same thing eight times. And you learn a lot in cycle one and two in terms of what works and what doesn't work to, to try to make things better going forward.

Dr. Matteo Trucco:

Yeah, absolutely. There's always a curveball-

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

... (laughs) in there too, but.

Dr. Seth Rotz:

Of course.

Dr. Matteo Trucco:

Yeah.

Dr. Seth Rotz:

Some of our listeners might have heard or understood that, you know, when you get chemotherapy, not only is it killing cancer cells, but it can also weaken the immune system and the ability to fight different types of infections. How do you think about prophylaxis or preventing infections with medications in your patients? And what types of precautions do you advise for your patients that are undergoing treatment?

Dr. Matteo Trucco:

Mm-hmm. So again, it has to be tailored to the patient in the specific treatment. So for example, the leukemias that you take care of, they're much more immune suppressed. Their immune system's knocked down a lot more than the patients I treat, even though I certainly (laughs) give them aggressive chemo, but they bounce back a lot quicker. And so that minimizes the risks in my patients. So kind of having that awareness that we're not talking about the same thing.

Dr. Seth Rotz:

Sure.

Dr. Matteo Trucco:

Um.

Dr. Seth Rotz:

Not, not every patient with cancer getting chemotherapy has the same risk for infection.

Dr. Matteo Trucco:

Exactly.

Dr. Seth Rotz:

Yeah. Yeah.

Dr. Matteo Trucco:

But again, you know, some common sense I tell people, you know, they shouldn't, uh, during chemo is not the time to explore, you know, raw oysters or other riskier foods or, or activities. Some common sense comes into play and we learned a lot during the Covid pandemic as far as distancing, hand washing, cleaning surfaces, face masks, those things, they're not foolproof, but they certainly go some way. And then we educate the patients as far as in this period you're at the highest risk, that's when you wanna stay home, that's when you (laughs) wanna avoid being exposed.

But these other periods, that's when go out, try to live as normal a life as you can. And you know, then, uh, again, it's a balance. If there is a risk of infection, but it's something that's really important to you, okay, you try to mitigate the risks as much as possible, but then you go and if the patient gets a fever or something, we, we are quick to act and, and to intervene. But again, uh, it's that balance of-

Dr. Seth Rotz:

Sure.

Dr. Matteo Trucco:

... a kid has to live, live their life.

Dr. Seth Rotz:

Sure. How do you think about pain? I think, you know, certainly our, our patients at different stages of treatment can have pain. Maybe it's from a tumor, maybe it's after a surgical procedure. Sometimes I hear families worry that they think that chemotherapy or radiation is specifically gonna be painful. Uh, usually in my experience that's not the, the case, but there certainly is times when our, our patients are gonna have pain. How do you think about pain management? How do you address that with families and, and what resources are available for you when, when things get tricky?

Dr. Matteo Trucco:

Pain comes into play. We use needles to, uh, give medicines. To some degree, there's a psychological pain of just coming to the doctor so frequently.

Dr. Seth Rotz:

Sure.

Dr. Matteo Trucco:

And, and especially with surgeries and stuff like that, there is, you know, physical pain. We are pretty aggressive with the pain medicines. We patients that, in this context, when there is a legitimate cause of pain, the risk of addiction to narcotics or something like that is, is minimal. And we do monitor that. And if there is some kind of worrisome behavior, we, we intervene as, as early as possible. We use a bunch of different techniques. Even just so our patients have these ports, which are kind of long-term IVs. They are placed underneath the skin. You need to go in with a needle to access it still.

So we numb the area very well with some cream. We have distraction techniques when the needle goes in, little things that vibrate and kind of numb the area. All those things play a role. For bone or, or nerve pain. We have a bunch of different drugs that we use beyond, you know, your Tylenol, your, your ibuprofen, your your narcotics, to try to kind of mix things up and again, tailor it constantly.

Dr. Seth Rotz:

To, to the type of pain issues?

Dr. Matteo Trucco:

To the type of pain-

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

... and what works for that patient.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

And then we also are are blessed with having a integrative medicine that can use alternate techniques like acupuncture with massage, things like that, that maybe the, the ha- hardcore science behind it isn't quite as robust, but it works for some patients.

Dr. Seth Rotz:

Yeah. Yeah.

Dr. Matteo Trucco:

And so if it's gonna work, why not try it?

Dr. Seth Rotz:

Yeah. How about nutrition? Um, that's a question I get a lot from families is, you know, what can we do to support our child going through this? And I think for a lot of families being able to cook and provide nourishment for their kid is important. And it's hard when kids don't want to eat with when they ha- are getting treatment. What are those challenges like for you? You know, how do you discuss those options? What medications or other folks on the treatment team can help out with those issues?

Dr. Matteo Trucco:

Yeah, first off, uh, one thing that comes up when when we newly diagnose a patient is I reassure them, "Listen, this isn't because of anything your child ate or didn't eat."

Dr. Seth Rotz:

Sure. Sure.

Dr. Matteo Trucco:

"You know, it, it's not because you didn't give them enough vegetables or anything." That sort of stuff might come into play with a- some adult cancers, but n- not with kids. So I reassure them that it's nothing they did, especially not from a nutritional standpoint.

Dr. Seth Rotz:

Sure. Some of those, uh, magic smoothies that they, they make in the hospital.

Dr. Matteo Trucco:

Exactly. Exactly.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

And you know, sometimes we are forced to, you know, wouldn't say force feed, but find a way to get the nutrition into the patient where they don't have to worry about it. So that's putting a, a, a feeding tube of some sort. And, and we do get to that point sometimes. And I will say in my experience there's a little bit of apprehension, but once it's done there's a lot of relief.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

'Cause like, I don't have to worry about eating.

Dr. Seth Rotz:

You don't have to worry about it. And the kid often feels better 'cause they're getting nutrition.

Dr. Matteo Trucco:

Yeah. Exactly. And then again, controlling the nausea as we mentioned earlier. And then there's times that we actually stimulate the appetite. There's like a handful of drugs that we can give to, to do that, and they work pretty well. And we've been amazed by some kids managing to keep their weight on during quite, uh, intense therapy.

Dr. Seth Rotz:

Yeah. How about physical activity? Do a lot of your patients have limitations in what they can do maybe because of surgery or maybe because they don't feel well from treatment? Like, how do you advise families to try to keep their kids as active as possible to prevent deconditioning? And what's your interaction with physical therapists and occupational therapists and so forth, like?

Dr. Matteo Trucco:

Sure. They do face this challenge. Again, just the fact that they're coming into the clinic or the hospital a lot, they're not feeling well because of the cancer, they're not feeling well because of the treatment. Sometimes because of surgeries or treatments, there are physical limitations. So all of that comes into play. Back in the day, you used to just say, "Oh, you're sick, you should rest." Well, we're actually finding that a little bit of light exercise is probably good for you-

Dr. Seth Rotz:

Yeah. Yeah.

Dr. Matteo Trucco:

... during this. So we, we kind of encourage patients, within reason, to maintain their, their physical activity. A few years ago there was a patient on a clinical trial of mine who we ended up talking about the fact that we both run and use the same running shoes. And so he came in shorts one day and was like, called the day before and s- said, "Make sure Trucco has his running shoes tomorrow." And so while we were waiting for his blood work to come by, me, him, and the social worker went for like a three mile run or something ridiculous.

Dr. Seth Rotz:

Not bad. Yeah.

Dr. Matteo Trucco:

Yeah. And you know, that's an extreme, but something like that is, is certainly worthwhile. I have a bunch of patients who, who love dancing and, and they're still doing like TikTok videos and, and all that during their treatment. And that's good, I think. Physical therapy is another group that, again, I should have mentioned earlier that we have in our clinic, which is fantastic. So while they're waiting for blood tests to come back or something, they can work with the patients and we try to get them involved with them early on.

Stretching, uh, moving, before and after surgeries, all very important things. And again, it, it, it works, it works for pain, it works for distraction, it works for mental health. So all those things are, are very useful. And again, it kind of, if they were active before, it gets back into trying to be as normal as possible and maintain that activity.

Dr. Seth Rotz:

Yeah. We had, um, Kate Echelman, a psychologist on for one of the earlier episodes, and she was talking a lot about her interactions with patients and families. In particular, in supporting patients' well-being. Do you have a general discussion with families about how they can stay engaged with families and friends and peer groups and social activities during treatment? Is that something you generally cover?

Dr. Matteo Trucco:

Yeah. We, we c- certainly discuss it, it, and, you know, child life, social work, and nursing, and, and psychology certainly touch on it as well. We tell people, this is, quite frankly, the time to call in the cavalry.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

This is a stress on any family. It doesn't matter what their means are. It doesn't matter how well-adjusted they are (laughs). It, it's a hard time. So family, friends, anyone that can support is, is useful. We, you know, as far as the, the kids themselves, we, we want them to see their friends. We want them to interact. S- some of my patients who are able to still go to school, at least in some capacity-

Dr. Seth Rotz:

Mm-hmm.

Dr. Matteo Trucco:

... if they can. Um, if not, they do it virtually and that's fine. Again, Covid taught us ho- how great Zoom is and, and how much you can interact with people via Zoom. But you know, what we tell people is by all means, see your friends, see your family. If they're sick, you know, that's the time that get over your s-, your sickness (laughs) and then we'll-

Dr. Seth Rotz:

Come back later. Yeah.

Dr. Matteo Trucco:

... come back later.

Dr. Seth Rotz:

Yeah.

Dr. Matteo Trucco:

Or Zoom, uh, call me, FaceTime, or something. I found out a few weeks ago a handful of my patients who were all kinda early teen boys playing some, some video game.

Dr. Seth Rotz:

Oh, no kidding.

Dr. Matteo Trucco:

Fortnite. Yeah. Turns out they all realized that I was their doctor. And so they basically, as they're playing or talking smack about me, and you know, that's one way of dealing with everything. And, and so we've had a lot of kids connect with each other via, uh, video games. And we actually have someone, one of our Child Life Specialists who facilitates that with, uh, helping kids getting on the video games.

Dr. Seth Rotz:

Dr. Trucco, really great to talk to you today. Thank you so much for joining us. Helping kids thrive during cancer treatment is important. We work closely with parents to maintain normalcy, provide support, and foster hope in their children. If you'd like to schedule an appointment with Cleveland Clinic Children's Pediatric Oncology, please call 216.444.5437.

Speaker 1:

Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the Little Health tips coming, subscribe wherever you get your podcasts, or visit ClevelandClinicChildrens.org/LittleHealth.