Today is September 1st, the first day of Childhood Cancer Awareness month. Join me on a special episode of A Beautiful PA Life Podcast for a beautiful conversation with Christine Jurgensen, whose son was diagnosed with biphenotypic leukemia in 2016. Christine shares the journey of Evan's diagnosis, treatment, and recovery, as well as the importance of normalcy and joy in the lives of children with cancer. Christine discusses the lack of funding for pediatric cancer research and the need for advocacy and support. Christine shares her experiences and offers insights on how PAs can better communicate and support families going through a cancer diagnosis.
Episode Pearls
Today’s Podcast Guest
Christine Jurgensen, CEO/Founder, Evan’s Avengers Foundation
In 2016, my son, Evan, was diagnosed with Acute Biphenotypic Leukemia, as he had both Acute Lymphoblastic Leukemia as well as Acute Myeloid Leukemia. For 3 years, Evan had numerous surgeries, pokes, prodding, IVs, blood and platelet transfusions, two bone marrow transplants, graft-versus-host disease (GVHD), infections, and then some. He had so many different chemotherapy medications and total body irradiation, which have saved him. However, they carry current and possible future side effects. I made a promise to my son that I would start Evan’s Avengers Foundation to help fund research to end Childhood Cancer.
With more than 12 major types of pediatric cancers and over 100 subtypes, childhood cancer should not be considered rare. Each day, 43 children, more than a classroom, will be diagnosed with some form of cancer and are at risk of a high mortality rate. Many will later suffer from secondary cancer due to medication used to save their lives. The National Cancer Institute receives its budget from the United States Congress as part of the federal budget process through appropriations for the Department of Health and Human Services and the National Institute of Health (NIH). Despite of this, only 4% of federal government cancer research funding goes to study pediatric cancer, that’s just 4¢ on the dollar. We must write our Congressman and plead them to increase this budget. Make some noise with us and #GoGoldforchildren #GoldStrong #Gogoldforevansavengers
Connect with Evan’s Avengers Foundation:
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Rachel La Costa (she/her) (00:00)
Welcome to this week's episode of a beautiful PA life podcast. I have a very special guest with me today. It's Christine Jurgensen. Christine is a mother to two children, Evan and Lauren and Evan, her son was diagnosed with biphenotypic leukemia back in what year was he diagnosed?
Christine Jurgensen (00:19)
It was in 2016.
Rachel La Costa (she/her) (00:21)
2016. And this is a episode in an interview that is very near and dear to my heart. I am a PA who practices in pediatric oncology. And so I take care of children who have been diagnosed with cancer in my professional life. And September is Childhood Cancer Awareness Month. And so I wanted to spend some time highlighting
these patients that are so important and special to me that I've dedicated my career to taking care of. And I really wanted to tell a story of a patient's journey, a parent's journey, a family's journey, and their experience dealing with such a intense and life -changing diagnosis. And hear, Christine talk about Evan's story.
And what we can learn from that, what we can do to be better as PAs to interact and communicate better with parents and families. And of course, how can we advocate better for these children who are facing a life threatening diagnosis that's affecting not only them, but their families, their friends, their entire social circle. And so with that introduction, Christine, I'd love to hear you sort of introduce yourself and tell me a little about yourself.
before we dive into talking about Evan's story.
Christine Jurgensen (01:48)
Yeah, thank you. I appreciate that. Well, as you said, I have my daughter. She is now 19 years old. I know Evan is now 17 and he's a senior in high school. So this is a success story. Well, gosh, without divulging too far into everything we're going to talk about, it's a day by day.
Right with after Evan's diagnosis and his whole story, we take life and we don't take advantage of it. We don't take it for granted for the most part. You know what I mean? You take everything as it comes and you roll with it. And you always, as I tell my kids, you have a bad moment. Let's try to pull out the positive spins. What can we do? You know, you can hold off to the sad moments for a minute.
Rachel La Costa (she/her) (02:25)
Mm.
Christine Jurgensen (02:40)
But don't let it overwhelm you and don't let it overcome you. Just roll with the punches. That's all you can do, right? but Evan's story, Evan was initially diagnosed in May of 2016. He was actually initially diagnosed with ALL, acute lymphoblastic leukemia.
Rachel La Costa (she/her) (02:48)
That's right.
Christine Jurgensen (03:03)
And then a month later, they had the idea that he may potentially also have AML, but then after a month it was confirmed he was biphenotypic. He had both the ALL and then acute myelogenic leukemia, which unfortunately decreased his odds, right? It was very, very rare to have that. So they right away told us that they wanted to go ahead and
start planning for a bone marrow transplant. They wanted to immediately start treating the AML because that was the most aggressive of the two. So we found ourselves inpatient 30 days at a time. talk about life changes, right? It is, is, it is. And especially Evan was in third grade.
Rachel La Costa (she/her) (03:49)
It's a lot. It's a lot of time to spend in the hospital.
Christine Jurgensen (03:56)
He was just finishing his third grade year and.
Your world just literally comes upside down left and right. You know, there's so many changes that have to happen. I ended up quitting my job because I wanted to be, I was with Evan in the hospital Monday through Friday. And then my husband would switch with me on Friday and he'd be there for the fun weekend, if you will. Yeah.
And then I'd come back. So, you know, on top of Evan not being home, my daughter was starting sixth grade year. I wasn't able to be there for her first days. You know, just lots of emotions going on. You know, your son is, you know, has this diagnosis. So while we were in the hospital, we figured, you know, we need to make the most of his childhood. He's missing it at home.
Not gonna lie, I wasn't the fun one. My husband was the fun one. he implemented Nerf guns and different things that we could put in the room just to keep his attention, know, video games, know, anything a little boy is gonna be into, right? But at the same time, my husband also wanted to make sure he incorporated, you know, asking other patients. This is obviously before COVID.
But he wanted to make sure he could get other kids out of the house, out of the room, out of their rooms, sorry, not house. Literally, literally. So just making different friendships so Evan could still have his friends and keep the positive mental attitude going on there because it's so easy to go down a rabbit hole, right?
Rachel La Costa (she/her) (05:32)
Which was their house, basically.
Mm -hmm. Mm -hmm.
Christine Jurgensen (05:53)
We had Evan's first bone marrow transplant in November of 2016. Could not understand why everybody was giving me the look when I said, he's getting a bone marrow transplant. I had no clue what that entailed, really. Yeah, and no. And that was actually probably a little bit more traumatic.
Rachel La Costa (she/her) (06:10)
Of course, how could you? You've never gone through it before.
Christine Jurgensen (06:21)
than the chemotherapy treatments and stuff. Now, don't get me wrong. It was all very emotional, right? Every day was a learning moment. Every day was, how are we going to make this happen? Time away, treatments, illnesses, the whole nine yards. But we did it. We did it. Evan did well.
and then he relapsed nine months later. That was very, very difficult because at that point we did not get a good prognosis. There was not, he was not anticipated to make it because the AML was very aggressive. So we automatically set him up for a second bone marrow transplant but they did not even anticipate him to
Rachel La Costa (she/her) (06:59)
Mm -hmm.
Christine Jurgensen (07:19)
get into what they call the remission state, not the remission you're cured, but obviously we're talking to PAs, everybody knows here. But he did, yeah, positive mind, I don't know, miracles, I don't know, but he made it into remission and we made it to the second bone marrow transplant. And here we are, he's a senior now, he's doing well.
Definitely hiccups along the way, but he has surpassed. There's no cognitive issues. mean, he's on the honor roll. He's still just as talkative as usual. Actually has extremely articulate. Yeah. So he's working. He's working, doing amazing.
Rachel La Costa (she/her) (07:49)
Mm -hmm.
Christine Jurgensen (08:10)
driving the whole nine yards. I mean, he's a regular teenager other than his growth was stunted. So he's a little shorter than everybody, but his big personality makes up for it. Yeah.
Rachel La Costa (she/her) (08:22)
I love that. I love that. Thank you so much for sharing that story and that experience and what it was like to go through all of that. know, I, one of the reasons why I love taking care of this patient population is that I just really think that in the world of pediatrics that
and particularly pediatric oncology where children are undergoing such a life threatening diagnosis. I think that amidst all of that, a child just wants a sense of normalcy. They just want to be a normal kid. They just want to do normal kid things. And I do wonder how much of the mindset is a part of that for children and
know, children receive higher doses of chemotherapy than adults do, presuming that their organ function is all sufficient and children have better cure rates than adults. 85 % of children will be cured of their cancer and have five year vent free survival. But, I wonder how much of that is because of mindset. And I'd love to hear how did Evan cope with
all of those months in the hospital, how did he establish that sense of normalcy, that sense of having joy and having normal childhood experiences within the confines of, I don't know, a 20 by 20 foot hospital room for months on end?
Christine Jurgensen (10:01)
Right? Yeah. you know, in all fairness, one of the biggest things is we did not want to focus on his diagnosis. He was too young. He was too young and we didn't, you know, want to whenever we would talk to the doctors, we'd walk outside. I didn't ever, I, I, we asked never to have a conversation in front of him because he was too young.
Rachel La Costa (she/her) (10:14)
Mmm.
Mm -hmm.
Mm -hmm. Mm -hmm.
Christine Jurgensen (10:29)
to be able to process everything. And we did not want him to focus on that. We wanted him to focus on being a kid. And that was our biggest thing. I was the artsy crafty one. My husband was the fun games and everything else. And so we decorated the room. We drew on the windows. We made sure we had plenty of games. had plenty of whatever he wanted to do.
Rachel La Costa (she/her) (10:37)
Yeah.
Hahaha!
Christine Jurgensen (10:58)
I mean, there was one patient who had what was called an easy roller. And my husband took a picture of it and sent it to me and I ordered it. And it was, my gosh, they are, and they are a workout. me tell you. We found out there was an adult version too. So we made sure we got the adult version for my husband. Cause again, he was there on the weekends. So there was not, not a lot of, you know.
Rachel La Costa (she/her) (11:08)
Those things are fun.
huh.
Christine Jurgensen (11:26)
back and forth going on. So it was a lot easier for him, but it was a physical therapist's dream because he was out of the room. He was exercising. He was having fun. There was laughter. It wasn't all fun and games, of course. We had the bad days, but then again, you do whatever you can to advocate for your child. You do whatever you can to instill
Rachel La Costa (she/her) (11:32)
Mm -hmm.
Christine Jurgensen (11:57)
as much positive as possible. You know what I mean? Same thing. just, what positive things can you do throughout the day? You know, and it's not always easy. Don't get me wrong. I mean, you have parents that you have the moments when you will want to go out there and scream in a pillow and, you know, throw things around and stuff because it's frustrating, it's scary, it's hard. But we found that by
Rachel La Costa (she/her) (12:15)
Mm -hmm.
Christine Jurgensen (12:26)
making sure that we, it wasn't just us, we again incorporated the other patients and the other parents in a lot of our activities because then we all became family once you were there. And it helped push that positive attitude and smiles on the kids and it helped the nurses, it helped the doctors, it helped everybody because you need it, right?
Rachel La Costa (she/her) (12:40)
Of course, of course.
I just absolutely love that. I absolutely love that. the power of the mindset and the power of, you know, I'm so curious because there's so many different sort of theories, I think, or approaches that parents have on talking to their child about a diagnosis like cancer. And I've heard so many different experiences. Certainly it's
varies based upon the age and the developmental stage of the child, of course, but I want to know how did you talk to Evan about his diagnosis ultimately? And how did you explain to him? This is actually kind of a common ethical question of if a parent chooses to not tell their child about a particular diagnosis, how do you as a PA approach that?
And how do you respect the parents wishes of what information their child receives about their diagnosis, while also balancing, you know, wanting to give the child some degree of autonomy and knowledge and information that's at their level. So I'm wondering, how did you talk to Evan about his diagnosis and how did he respond? What questions did he ask?
Christine Jurgensen (14:13)
We actually had a lot of help with child life because I didn't know how to do it. I would break down every time and you know, having your child watch you cry is not the best way to try to explain something. And again, we didn't really focus on making it seem as though that was it.
Rachel La Costa (she/her) (14:16)
Mm.
Sure, sure.
Christine Jurgensen (14:39)
you know, we were going down a certain path. We just explained that because of his age and you know, what he could process is that he just knew he was sick. He just knew he was sick and he had to be at the hospital to take medicine to hopefully get rid of it. He really, he was still really too young to be able to process the whole concept of cancer. It was
Rachel La Costa (she/her) (14:50)
Mm -hmm. Mm -hmm.
Mm -hmm.
Of course.
Christine Jurgensen (15:09)
when he relapsed that he'd already been through everything.
When the oncologist had a meeting with us and told us that there was, was a very, very grim prognosis, and this was probably not going to have a really good outcome, we asked for time before we had to talk to him about it, before we had to come back into the hospital. And we did it as a family. There was the four of us, my husband, my daughter, my son, and
we explained to him that it came back. And it was gut wrenching, right? So when I went to the hospital, we also found out that one of his best friends was still there, had a grim prognosis and had passed away literally right before we checked back into the hospital.
Rachel La Costa (she/her) (15:44)
Hmm.
Christine Jurgensen (16:06)
So I literally had a very, very long conversation with the doctors, with the nurses, with everybody to please not say anything to him, let me do it. If we had to have any conversations in regards to his diagnosis, not to have it in the room. And I was very, very stern about it because I did not, we didn't want him going down that rabbit hole, right? It's too easy for children, especially the teenagers.
Rachel La Costa (she/her) (16:15)
Mm -hmm. Mm -hmm. Mm -hmm.
Christine Jurgensen (16:36)
We notice that too. Teenagers are really quick. You have so many emotions already, right? I really honestly think that, know, child life again was a big saving grace with that when it did come to those hard conversations. So we would do it together. If not, child life would go in and just kind of easily talk to them.
Rachel La Costa (she/her) (16:42)
Yeah.
Christine Jurgensen (17:01)
And we were very fortunate. We had the team that allowed that to happen and We did have one hiccup with one doctor who had some pretty grim news in front of my son and I wasn't in the room. So when I had walked into the room, that news had already was repeated to me. And after that, it didn't happen again.
Rachel La Costa (she/her) (17:27)
Sure.
Christine Jurgensen (17:28)
because it scared the heck out of Evan. it really, really did. And, and I, I got really frustrated because again, it's human nature. You don't realize the bedside manner. You don't, you know, because you have a lot of different patients, a lot of different families, a lot of different personalities. So I was polite, but I did politely ask never to have those kinds of conversations in front of him again.
Rachel La Costa (she/her) (17:31)
Yeah.
Right.
Christine Jurgensen (17:57)
because it's too hard for him. It was too hard for him to process at that age. And I honestly think, you know, it does, it depends on the patient. It depends on the age, just like you said. And I think a really good, just to sit down conversation outside of the room with the doctors and the parents first to just kind of figure out how do you need me to help you? You know, let's work together as a team.
Rachel La Costa (she/her) (18:09)
Mm
You know, what that takes though is taking the time to actually ask the question. I think some of the mistakes that we sometimes make as PAs or as the healthcare team is assuming what our patient or their family needs. And I think sometimes we have, we can have sort of a paternalistic, I think is maybe the right word, approach sometimes of
Christine Jurgensen (18:29)
Right.
Rachel La Costa (she/her) (18:54)
telling you, I think that I know what's best for you and your child. And of course, on some level, right, we're recommending this particular chemotherapy regimen, this type of transplant, this type of medication, whether it's an antibiotic or whatever, like, certainly we do have expertise that we're bringing to the table in the care of your child. But I think it's equally important to hold space for the parent and the child if the child is old enough to be able to have those conversations.
And to actually ask, how can we support you? What do you need? How are you receiving this information? Allowing space for what questions does the parent have? I've noticed sometimes, sometimes there's some,
just like feeling of anxiety in the room with the parent and where I can feel that there's something at the back of their mind that is really bothering them, that maybe they're actually too afraid to say out loud, even outside the room. And I found that instead of me just talking, talking, talking and giving more and more information, when I notice that now, instead of
just talking at the parent, I try to actually just ask, you seem like you're really worried about something. Is there any particular question I can ask or can you tell me what you're worried about? And I can tell you just like flat out if that's something that I am worried about or if it's something that I'm not worried about, I might not have a 100 % answer.
But if I can help to alleviate an anxiety that might be an unnecessary anxiety, might be a very slim chance of that fear happening, then I feel like that's my goal as, you know, communicating what I'm seeing about your child's diagnosis, prognosis, their response to treatment, and your concerns and worries about the entire process, how they're coping.
And I'm wondering, what do you think, how can we communicate better with patients and families? How can we support patients and families better that are going through a diagnosis and a treatment regimen like this?
Christine Jurgensen (21:20)
So,
but I actually work for NMDP now.
just changed it from Be The Match to now it's just NMDP.
Rachel La Costa (she/her) (21:27)
Yes.
Christine Jurgensen (21:28)
Yeah, I've been there for four years and I'm a workup specialist with them. So now I get to actually facilitate the actual donation with donors.
but when I talk to people in my current role at work,
you pick up on the social cues, right? I'm on the phone with people though, so you just have to listen for cues all the way around. But when you're face to face with somebody, it's just like you said.
You see those facial expressions. You make eye contact with them. You humanize it, if you will. Not make it transactional. You're not going in just going off the chart, this is what's going on. You have to humanize it and say, listen. Because parents are always waiting for the other shoe to drop when you come in. You're always nervous. Okay, here's the lab. Is everything gonna be okay?
Rachel La Costa (she/her) (22:03)
Mm -hmm.
Christine Jurgensen (22:23)
I'm nervous. It's just take a breath. Take a breath and let them see the human part of you and say, get this. This is difficult. What can we talk about? What kind of questions do you have first? Before I go into my discussion, what do you have first? You know what I mean? Where you do, you have to let them know that you're human too.
Rachel La Costa (she/her) (22:40)
Mm -hmm. Mmm.
Absolutely. And we're on the same team. We want the same things. And ultimately, it's my job to listen to those concerns and worries and do the best I can to try to alleviate them or to try to, maybe I can't alleviate them, but to hold space and listen. You know, I one time asked one of the oncologists,
Christine Jurgensen (22:56)
Right.
Yeah.
Rachel La Costa (she/her) (23:20)
that I've worked with, when a patient is at the end of their life, what is the right thing to say to a parent as their child is going through that? And she said, there's no right thing, there's no magical words that you can say. That's not actually the goal, is not to say the perfect or the right thing. It's just to be there for them and listen to them.
Christine Jurgensen (23:45)
Yeah, I mean, that's exactly right. Every family is different. you know, parents are different how they are with their children, what have you. Kind of going back to just a little bit, just as a footnote, our oncologist, love her.
Rachel La Costa (she/her) (23:46)
know that they're not alone.
course.
Christine Jurgensen (24:07)
The best advice she gave us was, like you had mentioned earlier, keep everything normal. They just want things to stay normal. Evan was grounded in the hospital for being a stinker. You know, you know, we're like, okay, no games. And they're like, what? You're not going to let him play? Well, no, he wasn't listening. You know, you got to keep him grounded.
Rachel La Costa (she/her) (24:14)
Mm. Mm.
-huh.
-huh, -huh. The rules don't go out the window, -huh. Because normalcy, structure.
Christine Jurgensen (24:34)
Right? They don't go out the window.
Normalcy structure, same thing with parents who have received that horrible news, you know, that they might have to go into palliative care. They still need normalcy. One of the biggest things, because I'm still friends with a lot of the parents, you know, and unfortunately, a good portion of them have lost their children, you know, but one of the things that we can all agree on
Rachel La Costa (she/her) (24:51)
That's right.
Mm.
Christine Jurgensen (25:08)
is you just want to be treated normal. You just want somebody to come in and don't ask me how I'm doing. You know how I'm doing. Just say, how can I help you? What can I do? What can I do to help you? And that's it.
Rachel La Costa (she/her) (25:17)
Yeah.
Yeah.
Yeah.
I'm really curious to know. I talk a lot in this podcast about burnout and how burnout is so insidious in our culture, in the workplace, I think in healthcare in particular. And my theory about why burnout is so prevalent in healthcare is that I think a lot of people go into the field of medicine.
because they want to help people. think there's a lot of caretakers that naturally resonate and gravitate towards a career in healthcare because whether that's a natural skill, ability, passion of wanting to help others. But I think that where that goes wrong is when sort of a martyrdom complex takes over. And I think that
me being the best for my patient is by giving all of myself to my patients and not saving anything for myself, not taking the time or giving that same generosity, kindness, attention to myself that I give gladly and willingly to my patients, to my team, to my coworkers. And certainly you are a caretaker of a child who has gone
undergone a massive medical diagnosis and treatment. And I'm wondering how were you and how are you able to take care of yourself? How did you balance that? How did you find time for yourself? You know, there's that whole, you know, put on your oxygen mask first analogy or you can't pour from an empty cup. How were you able to be there for Evan and for Lauren and for your husband while also
being able to take care of yourself amongst all of the chaos and the anxiety.
Christine Jurgensen (27:25)
I didn't in the beginning. You don't know how because every point of view is consumed. It's just like you said, you're giving everything as you can to try to manage everything. And then when you have that final moment to stop, you're like, wait, hold on. So actually my coping method,
Actually, I think I speak fairly for my husband and I. Our coping method was the Nerf gunfights, was doing something extra to distract from the ominous feeling in the room. It was helping other patients in the hospital at the same time. It was deflecting, if you will. I don't know if that's necessarily healthy, but...
Rachel La Costa (she/her) (28:02)
Mm.
Mm.
Christine Jurgensen (28:22)
But the way we deflected was healthy because we were trying to bring the positive in because normalcy. mean, you know, I didn't take it necessarily time for myself, but my time for myself was being able to figure out different plans to make things fun, you know? And we did a lot of different things in the hospital and that helped me. We did...
Rachel La Costa (she/her) (28:27)
normalcy.
Christine Jurgensen (28:50)
started doing pumpkin patches in the hospital. We started doing makeshift Easter egg hunts for the kids. Because it was getting kids out of the room. that, again, was my way to be able to make time for myself. Because I was able to organize that kind of stuff.
Rachel La Costa (she/her) (29:00)
Yes.
Well, what I'm hearing is that you were, you were paying it forward to other patients, other parents, other families, because you understood how much normalcy and joy and fun helped to take you out of the negativity and the weight and intensity of what was going on. You know, it was still there even with the Nerf gun fights, right? But you were also
I think because you uniquely understood what each of those other children and families were going through, you were able to serve them in such a beautiful and generous way by helping to provide some sense of what brought you calm and safety amidst all the chaos. And that was normalcy. Normalcy and joy and play, really.
Christine Jurgensen (30:07)
normalcy.
Yeah. And you know, it, wasn't even just the patients. did help the nurses. It helped the doctors. It helped break that monotony, right? It did because they always knew, okay, guess what? We're going to do this. It's on tonight. Let's do this. I mean, it's true. It's the same thing with our, everybody was, you do get stuck in that rut. You do get stuck in the.
Rachel La Costa (she/her) (30:22)
Yes, -huh.
Hahaha!
Christine Jurgensen (30:41)
here we go and you know the diagnosis with a lot of the kids but if you have just that moment just that moment just to break away and have fun with the patients and just you know it's a great mental break so I think it helped everybody all the way around personally
Rachel La Costa (she/her) (30:59)
Absolutely. And maybe the lesson in this too is you have to prioritize that. And I think sometimes as a PA, I struggle to balance sort of my wearing my sort of professional PA hat where I'm trying to sound official and sound like I know what I'm talking about and, you know, provide
Christine Jurgensen (31:06)
Mm
Rachel La Costa (she/her) (31:30)
good recommendations and suggestions and communicate well to the patient and the parent. But balancing that with, again, as you mentioned, the human aspect of a kid just wants to live their normal life and have fun. And how can I engage in that? And this is absolutely why I went into pediatrics because kids just, they have that joy and they have that like,
Christine Jurgensen (31:57)
Innocence. Yeah.
Rachel La Costa (she/her) (31:57)
vitality, the innocence, the they aren't so bogged down by all the things that we carry in adulthood, the weight of all of these burdens and expectations and and being able to see a child going through one of the most difficult, you know, diagnoses and treatments that is out there and just trying to enjoy the moment.
for however long that moment lasts, I think is just so beautiful. So beautiful.
Christine Jurgensen (32:30)
Yeah, that was our goal. Especially the second time around. We even organized a Mario Kart tournament.
Rachel La Costa (she/her) (32:40)
I love it. love it. and I mean, I'm sure that was such a healing practice for you as well to, to give back and to share. And this is a great segue. So I'd like to take this opportunity. So as I mentioned, September is childhood cancer awareness month, which is all about raising money for research and treatments for children who are diagnosed with cancer and
Christine Jurgensen (32:42)
Yeah, I mean.
It was.
Rachel La Costa (she/her) (33:10)
You have been involved in advocacy for children with cancer, seems like from day one almost of Evan's diagnosis. And I'm going to share a few statistics. So every year, more than 17 ,000 children are diagnosed with cancer in the U S which means every day 47 children are diagnosed with cancer,
And cancer is the leading cause of death by disease in children in the United States. And yet the National Institutes of Health, their annual budget only allocates 4 % of the funds for research into treatments and cures for pediatric cancers. And so how have you sort of reckoned with that?
discrepancy or that lack of funding and support for children like Evan who are undergoing this type of diagnosis? And how have you taken those advocacy efforts into your own hands and advocated for Evan and children like Evan?
Christine Jurgensen (34:16)
when I found out that statistic, especially when right after Evan was diagnosed, was angry. I was angry. I was frustrated knowing, you know, all cancer's bad. All types of cancer are bad, and I'm not discrediting anything. But I could not understand with those numbers, those statistics, that no matter
what efforts had been made, they still are at 4 % of the budget going to childhood cancer research. Our children are undergoing, I think since Evan's been sick, only one more pediatric chemotherapy has been passed because there's no money in it. So I got angry and frustrated and I said, okay, what are we gonna do about it?
you know, we're going to go ahead and we're going to put it out there and we're going to spread the word. We're going to make sure we're going to spread awareness. And we started our foundation after that. And we're still doing it. We were official in 2018 and we are still contributing to childhood cancer research. Actually at the hospital Evan was at.
I've been fortunate to be able to donate every year towards that because that's the biggest thing. And then we also, of course, have the fun stuff, right? We do the bags and now that COVID restrictions have been lifted, we're trying to get in again, but it's the research. That's what we're trying to get at. And we're trying to open eyes and we're trying to make sure if we need to go to DC to make some waves to change that number.
Rachel La Costa (she/her) (35:46)
Mm -hmm.
Mm -hmm. Mm -hmm.
Christine Jurgensen (36:09)
because it needs to go higher. mean, you know, our children, I mean, that's the tagline for a lot of us is our children deserve more than 4%. It still blows my mind that it has not changed.
Rachel La Costa (she/her) (36:19)
That's right.
That's right. Yeah, the hashtag more than four is the hashtag that's used this month when talking about the discrepancy in the lack of funding for pediatric cancer. And I think it's really interesting that you kind of said something to the effect of, well, there's no money there.
sort of as if it's like not worth it to invest in finding better treatments and cures for these children. And I mean, that's completely dehumanizing it, right? That's completely looking at it from a capitalistic, corporatized approach. And how can you say that to a parent whose child was just diagnosed with an incredibly rare type of cancer like Evan was?
Christine Jurgensen (37:16)
and not to mention the medications that our children are receiving are adult medications, you know, and their organs, you know, there's there's so many side effects that happen, long -term side effects that occur because of that. And because it's just it needs to change. mean, there's something that has to be done to open somebody's eyes or
you know, to make that happen. So.
Rachel La Costa (she/her) (37:46)
Mm hmm. How can we as PAs support and contribute to childhood cancer awareness and where can we donate our money or our time to help in this cause, which of course is very near and dear to our hearts.
Christine Jurgensen (38:07)
Well, there's so many, mean, I'm biased, right? Because we have our foundation. we have our website, evansavengers .org on the website or we're on social media.
but you know, you have Alex's lemonade stand, plenty of us that are out there that are doing whatever we can. The major thing is, like, reach out to your state representatives.
Reach out to as many people as you know who may have a way to make a difference. And just constantly, I mean, you are in the forefront as the oncology PAs. You are in the forefront. You see it happening on a daily. You see the medications. You know the side effects. You have more information than the parents know because you see it firsthand.
So using your expertise and your education on all of that would also help, you know, just sharing your stories.
Rachel La Costa (she/her) (39:08)
That's so beautiful. Thank you. Thank you. Yeah, you're right. And I think it's so important to also put our money where our mouth is, right? And if this is a cause that is important to you, then, you know, maybe you can't donate time. Maybe you can't, maybe you can only donate a small amount of money, but every small amount helps. Every small amount is contributing to a very important cause that, I mean, it's
our children. Our children are the future and you know, I agree with you. I think they deserve more than 4%. Absolutely.
Christine Jurgensen (39:47)
They do, they do, because you never know who that kid is gonna grow up to be, right?
Rachel La Costa (she/her) (39:48)
Hmm.
That's right. Let's give them the opportunity. Let's get them the opportunity. Christine, this has been such a beautiful conversation. I end every podcast episode by asking my guests this question. What does a beautiful life mean to you? And do you think that you have a beautiful life?
Christine Jurgensen (39:56)
That's exactly right. That's exactly right.
I knew you were gonna ask this question. I'm gonna cry. You know, again, I have a different perspective in life now, you know, and I do think I have a beautiful life. I have my family. I have my miracle kid who actually just got home from school. It's just...
Rachel La Costa (she/her) (40:36)
You
Christine Jurgensen (40:40)
It's all in perspective. have a beautiful life. You know, I have everything that I could possibly need or want. And you know, that's all. I have friends, family, health. All you can do.
Rachel La Costa (she/her) (40:54)
Mm hmm. hmm. I love that. I love that. And particularly being able to find the beauty and the peace and the solace after going through something quite literally so traumatic and watching your child go through something so traumatic, I think is is really just so beautiful.
Christine Jurgensen (41:16)
thank you. I appreciate it. It's always going to be a work in progress, right? Not every day is going to be peachy keen, but you got to do whatever you can to get yourself out there and find the positive spin and just keep rolling with the punches.
Rachel La Costa (she/her) (41:22)
Mm -hmm. Mm -hmm.
That's right. That's right. That's right. Taking it moment by moment and being present and whatever that moment is. Thank you so much, Christine. I'm so grateful for you. Thank you for your time.
Christine Jurgensen (41:38)
Right, exactly. You're very welcome. Thank you. It was such an honor to be asked to be part of this. I really appreciate you. You made my day.