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I Survived Acute Lymphoblastic Leukemia: Now What?

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Published on March 19, 2020

Key Takeaways

  • Doctors seek a balance of efficacy and toxicity when considering different medicines in a patient’s treatment plan.
  • Research has shown that outcomes are much better for young adult ALL patients if they are treated with a pediatric oncology protocol.
  • To cope with cancer, survivors recommend expressive writing and building an empathetic support network to handle uncertainty after treatment.

For patients and families dealing with an acute lymphoblastic leukemia diagnosis, questions about treatment and quality of life linger long after the initial appointments. What does life look like after ALL treatment?  

Three young adult survivors from around the globe take an honest look at their experiences from diagnosis to survivorship. Whether they were diagnosed as young children or in their late 20s, the patient panel finds shared experiences discussing tough topics like the long-term effects from treatment like fertility or additional medical complications. They also share healthy coping strategies and how each found a unique sense of purpose after cancer. 

Pediatric oncologist Dr. Debra Friedman from Vanderbilt University School of Medicine, and Aaron’s original doctor offers an expert perspective on choosing therapy and why pediatric centers can be better aligned for young adult patient care. Building a plan that treats the whole person, not just the ALL, creates the best possible outcomes long after treatment.

This program is sponsored by Amgen and Adaptive Biotechnologies. These organizations have no editorial control, and Patient Power is solely responsible for program content. It is produced by Patient Power.   

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Transcript | I Survived Acute Lymphoblastic Leukemia: Now What?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Aaron Poor:

Hello, everyone, welcome to another Patient Power video. Today we're talking about acute lymphoblastic leukemia. We have a couple of survivors and a doctor here as well who's an expert in the field, Dr. Debra Friedman. My name is Aaron Poor. I am an acute lymphoblastic leukemia survivor. I was diagnosed in 1997 when I was 3 years old. This is commonly a childhood cancer, one of the most common that we hear about. And my story, I was diagnosed on a family trip to Disneyland. My parents had noticed that I'd been really having a hard time breathing and getting a lot of bruises around,. And one day when we came back from another day of a 3-year-old kid not having fun and struggling to breathe around Disneyland, and they said, "We need to get this guy to the Anaheim emergency room." And they did a couple of tests.

If you're watching this because you've been diagnosed, you might know this part of the story, but they said, "Hey, we think this is leukemia. We need to run a couple of more tests to get us back, to confirm it." And it was confirmed. We flew back to Seattle, and actually our honored guest today, Dr. Debra Friedman, was one of my oncologists through the whole treatment. So I'm really happy. We're lucky to reconnect today and to have her on the camera. I did three years of chemotherapy, and this July will be my 20th anniversary as a cancer survivor. So exciting stuff, and I'm excited to share our time today with Zoey DeLeon and Fabian Bolin. Zoey, do you want to start? Tell us where you are and tell us your diagnosis.

Zoey DeLeon:

Sure.

Aaron Poor:

Tell us what you encountered.

Zoey DeLeon:

Yeah. I currently live in Spokane, Washington, but I was born and raised in a little town called Prosser, Washington, it's just a rural town in Eastern Washington. So I was one-and-a-half when I was diagnosed. And about a year old, I had been running around, and then my mom had noticed in October 1996 that I had stopped walking, and I had started crawling again, and she thought that was really weird. And then every time she would change my diaper, I would scream out in pain, and I was just really fussy, and I was running fevers. And so she took me into a primary care provider, and they ran labs and later that day, they gave us a phone call saying we needed to go to Seattle Children's for treatment. And I started treatment later that day.

And so I ended up staying there for two years, I finished treatment in December 1998, and I ended up actually getting the chickenpox right after I had gotten into remission. So my immune system was completely out of works, and I had been hospitalized for that. So that was a little icing on the cake, but I had to be hospitalized for that, and so after that I was able to go home and then sort of normalize again.

Aaron Poor:

Yeah, get back to it. And then probably our farthest guest here today is Fabian. Fabian, do you want to just tell us where you are and a quick little story about when you got your diagnosis?

Fabian Bolin:

Absolutely. Thank you for inviting me to this panel discussion. My name is Fabian Bolin, I am based in Stockholm, Sweden. And some four-and-a-half years ago, I was diagnosed, so this was in May or actually in July 2015. About a month earlier, I'd started feeling tired. So, I was living in London at the time, and initially, I thought it was related to stress, hard work, London life in general, so I didn't really do anything about this tiredness, didn’t see a doctor or anything. Also, because I had a flight to Stockholm about a month later to visit my parents over the summer, I decided to just hang in there and just fly back and get some proper rests.

During the month though, this tiredness just kept growing, I started feeling exhausted, I started aching all over my body, sweating and on the very day, that I was going to fly to Stockholm, I woke up with this massive pain in my chest area that made it really hard for me to breathe, that got me scared. I made it to fly to the airports and flew back to Stockholm. And when I met my parents, I told them, "By the way, look, I think something's wrong. I need to go through emergency, because I can't breathe." So, I went there, and I got a scan, it was a bit of back and forth, but two days later I was diagnosed with acute lymphoblastic leukemia. And yeah, I was put on a clinical trial, so I was given a 60 percent to 70 percent chance of surviving, but I was also told that I would have to go through some 900 days of chemotherapy.

Yeah. Quite a long journey especially for me, because I mean for me honestly that realization of those 900 days was more traumatizing for me than the fact that I might actually die, if you know what I mean, because for me it felt like my life was ruined, my career was gone and I could no longer see a clear path for myself.

Aaron Poor:

Yeah. Even once you're through the initial phase, you still have to follow up and have this medicine, this regimen continue.

Fabian Bolin:

Of course. I mean the initial phase, the initial treatment was extremely intense, of course, but I got rid of all the cancer in my body within eight weeks. And then I just had to continue knowing that I was cancer-free, I had to continue taking the chemotherapy in order to avoid a relapse, which makes sense, but very frustrating and very sort of demoralizing.

Aaron Poor:

Yeah. We'll talk more about some of the chemotherapy later in the program. Dr. Friedman, you're joining us from Nashville, can you tell us how long you've been in the oncology field?

Dr. Friedman:

Sure. It's a pleasure to see all of you today and particularly you, Aaron. It's always lovely to see patients that I treated when they were very little grow up to be wonderful young adults, that helps me get up and go to work every day, doing what I do. So I finished my pediatric training initially in 1994 and then my oncology training in 1997.

Aaron Poor:

Great. And that's right around when we met?

Dr. Friedman:

Yeah.

Aaron Poor:

And one of the things that we've heard in other interviews through this program is talking about these long-term side effects. We’re able as kids, as young people, to receive heavier, more intensive treatments, I wonder if we could start talking about how you break down when you're talking to these patients, why this treatment is so intense and maybe some of the long-term effects that they'll see. It's a tough decision for parents and kids to think about, "Well, I need this to stay alive." So can you talk about how you—when you're having that conversation with families?

Dr. Friedman:

Sure. I think the most important thing when I talk to a family or to a patient or to a combination of a family and a patient is to be sure that we're talking about balancing efficacy with toxicity. We don't want to cure a child or an adolescent into young adult with cancer only to have them become a chronically ill adult if that can at all be avoided. And over time, largely we have been able to avoid that, which is great. So I always tell patients and family that my first goal is to cure their child.

And I try to stay away from, when I can, statistics because if their kid is not in those statistics, it really isn't very meaningful. But I just tell them that my goal is 100 percent for their child or for them, and we're going to give them the very best therapy that we know of in whatever year it is. And we know that that therapy will be associated with some short-term side effects, and then even when they're finished with cancer therapy, we'll need to follow them long-term as a medical community, not necessarily in oncology, to be sure that they don't develop any long-term effects, health effects, psychosocial effects from their cancer and it's therapy. And we do everything we can during that period of time to prevent that.

Aaron Poor:

Yeah. Excellent. I like what you said about efficacy versus toxicity. And talking about psychosocial effects, Fabian, you said that you're working in London. I know now you have an app that really looks at building this connection. Can you talk about your experience, meeting with doctors and how that led to creating the War on Cancer app?

Fabian Bolin:

Absolutely. So it brings us back to when I was diagnosed. Like I said, that kind of feeling of not knowing at all what my life would look like was traumatizing for me, I experienced it like that, and I had a ton of questions that I needed answers to. They were not so much around the specifics of the cancer treatments, but rather about life with cancer. Asking my doctors like, "What does life with cancer look like? What happens when you have cancer? What happens on a regular Tuesday when everybody else goes work? Can you...?" I was determined to try and live my life to the fullest.

So, I asked for advice around the diet and exercise as well. And I asked some other ways that I could eat in order to maximize my energy levels. And then the doctors just looked at me and told me like, "Look, just eat whatever makes you happy." I mean to hear something like that was self-belittling and frankly, you don't even say that to a healthy person, so why do you say it to someone who's been diagnosed with cancer? But I quickly understood then and there that I'm not going to be able to get my answers on these topics from the doctors or the nurses, so I needed to go elsewhere. And my strategy was social media. So I wrote a post on Facebook where I just explained the situation and asked what if people could help me find someone going through the same thing as I did.

Now, this post was shared 13,000 times over the course of 24 hours. And a lot of people talk about the moment you're diagnosed as a life-changing experience, which it was of course, but for me it was even more life changing what happened after this post. So literally, thousands and thousands of people from all over the world sent their love and support back to me. Lots of personal stories started pouring in from people, but what I mostly noticed above all was gratefulness. So basically, everybody started with saying, "Thanks, Fabian for sharing this. I'm going through what you're going through and this is really helping."

That led me to experience for the first time in my life, altruistic happiness, so happiness generated from helping others. And that led me to decide that, "I'm going to share my entire journey through cancer in a blog, and I'd name the blog Fabian Bolin's War on Cancer." Now, this blog became a savior from a mental health point of view, and it really made me understand the power of sharing , because we work now with dealing—I mean our company mission is to radically improve mental health to everyone affected by cancer.

In hindsight, now having deep-dived more into the mental health aspect of cancer, which is—I mean it goes—it becomes more and more clear to us that cancer in fact does inflate trauma on a lot of patients. And if you're traumatized without actually dealing with it, you're running a risk of developing either PTSD or clinical depression. So those numbers for patients are—so we looked at some research and 22 percent of patients actually develop PTSD within the first six months, and 25 percent of patients develop clinical depression according to American Cancer Society. I mean you as a cancer patient, largely from my experience, the healthcare deals predominantly with the cancer aspect, the physical cancer journey, but the mental health aspect you've got to deal with on your own. And so when studying a lot of coping mechanisms for trauma, PTSD and clinical depression, I understand that when I was writing my blog, I in fact or indirectly applied a lot of coping mechanisms at the same time.

Sorry for dragging out so long, but let me just reach the conclusion here. I mean one coping mechanism is expressive writing. And so, I mean to write and then share what you're going through is therapeutic from a trauma-coping mechanism point of view. So because I was writing every day, I was processing in real time. And another coping mechanism is to have social support. So what you need around you is people who understand you, not people who necessarily sympathize with you, but that empathize with you. And because I was writing, everybody around me that read, understood that, "Okay, we can't treat Fabian like a victim. We got to treat him like Fabian going through cancer."

And lastly, yeah. And the third coping mechanism is helping others. So by helping others, you heal yourself. I mean if there was one aspect that really had a profoundly positive impact on my mental health, it was that. So, this blog peak at around 200,000 readers. And I can honestly say that I'd never in my life felt a bigger sense of purpose or meaning than when I was doing this. And I've never felt happier.

Aaron Poor:

You need to become a full career.

Fabian Bolin:

Well, I started feeling grateful towards being diagnosed and around here a vision formed just because I said, "What if we can build a product that replicates what I'm going through? What if we can productize and build an application out of the experiences of sharing your story, helping others and getting that kind of sense of connection with others?" And that became the foundation for building the War on Cancer app, which today is a social app for everyone affected by cancer.

Aaron Poor:

I think it's a great intersection with Patient Power too.

Fabian Bolin:

Certainly.

Aaron Poor:

Taking that as your career, Zoey, you're now in Gonzaga, you're getting a master's in nursing, did your diagnosis help narrow your career path? How does that relate in your role?

Zoey DeLeon:

Yeah. I mean I don't remember a lot of my treatment. Luckily, I think. I remember the tail end, and I didn't have too many—I mean we met so many great people; the nurses, the doctors, other kids going through treatment. We actually built a great community. And so I actually have quite a few fond memories, and it did definitely peak my interest in medicine and healthcare, and I mean going home, I was almost four and I would have my teddy bears, and I'd be bandaging them up and making little hospital beds, and that's how I would play, which is a little bit different than most children. But I mean from a very young age, I knew I wanted to help people, and I really love medicine. Right out of high school, I originally wanted to do firefighting, but then realized that wasn't it. Yeah, so I was a volunteer for a little while, but I realized I wanted more interaction with people and helping them with illnesses.

And so nursing school was a great fit for that. I went to nursing school, and then I worked for a year here in Spokane and decided that I wanted to become a family nurse practitioner. And so I am continuing to work at a community health outpatient clinic, and I absolutely love it. And I've thought about working with survivors or even in some pediatric oncology, but I'm not sure, I mean I'll see eventually what I want to do. But part of me wants to keep myself away from that area for some reason, and so we'll just see, but whatever I do with my degree definitely I know I want to…

Aaron Poor:

…keep helping people. That's something that I think we all have. When you get a diagnosis like this, you just need so much help from strangers and from family and from whoever you know is able and willing to provide that that it really does give you an opportunity to be grateful. Zoey, I wanted to follow up, because you were from Prosser. What's the drive from Prosser to Seattle where you were treated? How long is that?

Zoey DeLeon:

Oh, about four hours. Yeah.

Aaron Poor:

That's not afternoon trip necessarily?

Zoey DeLeon:

No, we lived at Ronald McDonald House.

Aaron Poor:

Okay. Yeah. Can you...? I mean you went to Children's, Seattle children's is a very well-known hospital, there's good cancer medicine. I wonder, Dr. Friedman, can you talk about being a specialist, an oncology specialist, and if there are patients that aren't necessarily near or maybe are four hours away, the value of really going to see an oncologist or a pediatric oncologist?

Dr. Friedman:

Sure. So I think the first thing is pediatric cancer in many ways is different from adult-onset cancer. There are some diseases that a medical oncologist does, so an oncologist who treats adults never see in their career, because they truly limited in children. There are other diseases, such as acute lymphoblastic leukemia, which we're discussing today, which are far more common in children than adults. And even when they occur in adults, research over the years has shown that the outcomes are much better in young adults such as Fabian, if they're treated on a pediatric oncology protocol as opposed to a medical oncology protocol. So, when a child is diagnosed with cancer, it's really important for them to be treated by a pediatric oncologist.

And because childhood cancer is relatively rare, it represents less than 2 percent of all the cancer in the United States, pediatric oncologists in general are not in private practice, they're not in small communities. Most pediatric oncologists are in practice at large academic medical centers or large community hospitals, and therefore not only does that child have the benefit of seeing the pediatric oncologists there, they have the benefit of all the pediatric subspecialties that are in that hospital.

When we treat a child for cancer, we don't only treat their cancer, and we never should only treat their cancer, we need to treat the whole child. Sometimes we need other subspecialists, medical subspecialists, cardiologists, infectious disease doctors, kidney doctors, et cetera. But also we need support from non-medical specialties. We need support from social work and child life and psychology and psychiatry and nutrition and physical therapy and occupational therapy. That's all really important. Not every child, then there's probably no child who ends up seeing all those people, but they all need to be available. And when a child has cancer, if they're referred to a pediatric oncologist at a pediatric oncology center, they're going to have the advantage of therapy for their entire body as well as therapy for their family members, because cancer in a child doesn't happen as an isolated event, it happens to the whole family.

Aaron Poor:

Yeah, and treating the whole person is something that we've talked about. After chemotherapy, I learned that my kidneys were no longer growing and as we continued to progress, I started seeing a pediatric nephrologist. In 2011, I ended up receiving a kidney transplant from my dad, another part of my journey. Zoey, have you had any additional complications? Or can you talk about being a survivor, we say "healthy," in quotes, have you seen anything else from your treatment?

Zoey DeLeon:

Luckily, no. I'm supposed to do echocardiography I think every 10 years as well as ECSA scanned and lab work every year. And I have to admit, I'm not always the best at making sure I get those done on time, but I do try. And the only thing that I—and I don't know if it's related or not, but I have this knee issue on my right side, and I did have AVN, avascular necrosis, in my right hip. And so I'm not sure if there was an alignment issue because of that. But when I was 18, I noticed my knee was hurting, and so I went through a bunch of physical therapy and imaging, and I couldn't really pinpoint what had happened. And I do have a tracking issue, and so I'm not sure what caused that, but that's the only issue I have. So it's a musculoskeletal issue, but like I said, I don't know if it's related, but I so far haven't had any cardiac issues and…

Aaron Poor:

You love that?

Zoey DeLeon:

…oh, yeah. So far it's been pretty minimal. So yeah.

Aaron Poor:

Can you talk about, maybe, so you're 18, your knee starts hurting and you've grown up your whole life as a cancer survivor. Can you put us in your head when you're like, "Okay, I have this new thing, and I need to go to the doctor." How do you manage that? Maybe a fear of recurrence or...

Zoey DeLeon:

Yeah. I mean, even now when I get a bruise, the first thing I think of is, "Oh, my gosh, my cancer is back." And then logically I'm like, "No, I bruised. It's okay, it's fine." But my brain definitely does go to that. And going to the doctor doesn't seem a really weird thing to me, because I'm so used to it. And with that particular issue, I didn't really fear cancer, I was just frustrated with the situation, because it did limit what I was able to do. And so I can't run.

And so that was a big change and I had been really active previously, it was when I was volunteering with the fire department. They attributed me being really healthy to how active I was after treatment, I did ballet for 14 years, and I think that really helped my hip reform. But it was really frustrating. And not knowing whether or not it was related to my cancer treatment or not has been frustrating for me, because I get angry and I think, "Is this because of the treatment in some way, shape or form?" and then it makes me a little bit angry at the whole situation.

Aaron Poor:

Yeah. I think that…

Zoey DeLeon:

…it could be completely unrelated. I'm not sure, but that unknown there, even though it doesn't change anything, I think I want to have answers and know and…

Aaron Poor:

…and you question it. Fabian, you're now two years out of your 900-day chemotherapy. Can you talk about going to the doctor, maybe when you get a cold? You gave us some good coping strategies earlier; do you use those day to day? Is that pretty helpful still?

Fabian Bolin:

Well, I mean I haven't really noticed any sort of negative consequences yet. Honestly, I feel stronger than ever due to the positive life changes I've made from going through cancer. I eat much better, I've cut down on alcohol consumption, I exercise regularly, and I meditate on a daily basis, and these help me to feel better, stronger and healthier. I mean I don't have much contact with my healthcare professionals, I mean my doctor, it's on a six-month basis and that's about it. And I also take blood tests on a monthly, bi-monthly basis, and that's how they see whether something's going on. But I can really relate to what Zoey has just talked about, sometimes that kind of a fear, of relapse is always there, and I guess that's something that you are going to have to learn to live with, because I think it's impossible to completely—even though I think I have a pretty relaxed mindset around it, and I don't believe in any way that I'm going to get it back.

Aaron Poor:

We're coming to the end of our conversation, and I'll say thank you again. Dr. Friedman, can you talk about the future as we still are doing these intense treatments that people are resilient to, that young adults are resilient to, do you see future clinical trials that have less intense side effects? That'll be my first question.

Dr. Friedman:

Yeah. So interestingly enough, treatment for childhood acute lymphoblastic leukemia right now is not incredibly different from when Zoey and Aaron were diagnosed. We use pretty much the same drugs. Now, over time, we have found that we can tweak the amount of some of the drugs, we can tweak the order of some of the drugs, and we are always looking again with a focus on balancing efficacy and toxicity to continue to improve survival but do that non the cost of more side effects, but rather improve survival with less side effects. And there are several new drugs now in clinical trials for acute lymphoblastic leukemia, and we're hoping that over time, we're going to be able to trade out some of the traditional cytotoxic chemotherapy that has all these side effects, short and long term, with more targeted agents by harnessing the patient's own immune system in using immunotherapy.

I think the future of cancer therapy is to decrease treatment that's associated with short and particularly long-term toxicities and try to trade out for more biologically targeted therapies and therapies that harness the patient's own immune system. And we are well on our path to doing that, but it's not going to happen overnight.

Aaron Poor:

Yeah. So, getting more patients in clinical trials helps move that faster and being able to get patients to these centers of excellence wherever they are, are good ways that we can help treatment advance. I just wanted to talk, one of the things that I've heard about too is Fabian's talked about mental health and we've talked about Zoey too and we've talked about diet and exercise, fertility is one of these things that come up too, can you share, Fabian and Zoey, did your doctors as—I mean Zoey, you obviously you were one-and-a-half, how have your doctors brought up those conversations? And how do you process, "We're young adults. We don't really want to think about family planning." I mean I'll speak for myself, but if you don't have to have that conversation, can you talk about how you process that?

Zoey DeLeon:

When I was transitioning from no longer seeing the children's hospital, a provider I had, because I had gotten too old, they said, "Okay, you're graduating." That was when we talked about it. And they had recommended if I wanted to have a family to start that before I'm 25. Because they don't really know, I don't think exactly what fertility will look like for kids that were treated with the increased rounds of chemotherapy, we're the first childbearing generation for that. And so, I turn 25 later this month, actually. So it's definitely in the back of my mind, and they didn't really tell me what the importance was of that number, I'm not sure what logic and research went behind that, but I don't necessarily feel like I'm ready to have a family yet.

My husband is here in Spokane, in medical school. And so, I know there's never a great time to have a family, because it’s a lot. But I feel like there are better times than others and right or better times than others. And right now, I don't feel quite ready, but I do feel pressured to start sooner rather than later, because I don't want to turn 30 when some people can have kids, and find out I can't, then I have to go through that whole thing. So yeah, we're trying to figure it out.

Aaron Poor:

Another only piece of uncertainty.

Zoey DeLeon:

Yeah. I absolutely. Yeah.

Aaron Poor:

And, Fabian, did you have any conversations about that too?

Fabian Bolin:

Well, I guess it's a bit different for guys in that sense, but they just told me like, "Look, here's a cup, we need your semen, because you might become infertile." But I was told pretty soon that it was only that the real risk is if you need to have a bone marrow transplants. And luckily, I responded well to the chemotherapy. So I'm not worried in that sense.

Aaron Poor:

Great.

Fabian Bolin:

That I'm infertile. But now, they didn't really talk much about it. Sweden is one of those countries where it's a taboo subject to talk about intimacy and all of these things. So we have very little information about it.

Aaron Poor:

Another section for the War on Cancer app.

Fabian Bolin:

Certainly, we have intimacy as one of the topics, when you share your story, because that's something I think in general, sex and intimacy and fertility are such important things for most people. Yet we don't really talk about it much and that I think can be very mentally draining and challenging.

Aaron Poor:

I think that's true and that's really—we've heard that today. I want to say thank you to everyone for joining us. Why don't we leave on a high note, do you want to share maybe a memory you had when you learned that you no longer had cancer? Maybe, Fabian, that's more recent for you. 

Fabian Bolin:

Yeah. I remember it was seven weeks into the treatment and I had done yet another bone marrow biopsy reports, which hurt like hell, by the way, because they drag out part of the—it exerts part of your bone marrow, but I remember walking in with my parents and the doctor told me—doctor that was, I think from Russia and not necessarily the warmest of people, but she just told us right away, "There's no cancer." And that's about it. And I remember the wonderful relief and feeling that, "Okay, my life can continue now and well, not my life, but a new life can start." So that's what I felt. And yeah, it was an amazing experience

Aaron Poor:

Zoey, do you do anything to maybe celebrate? Do you have a day that you pick? Or you're just happy in general.

Zoey DeLeon:

I'm just happy.

Aaron Poor:

That's good too. Well, I want to thank you all. Dr Friedman gave us some good looks into different therapies that are coming up, and I think Fabian and Zoey talked about some of the uncertainty that we still have and good strategies to deal with it. And I just want to thank you all for sharing your time today. As we say at Patient Power, sometimes knowledge can be the best medicine. Thanks everybody.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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