“I don’t have time for the usual teenage things. That’s all small stuff, anyway!”
A message from the Portrait Project team:
A harsh reality of participating in a clinical trial? It’s not guaranteed to work. And when your life's on the line, this can be devastating.
In Part I of this story, you’ll hear from 17-year-old Emma June Kent, and Jamie, her Mom and caregiver. When Emma June was 13-years-old, she was diagnosed with a pediatric cancer called osteosarcoma. Our first conversation occurred in the summer of 2023.
Unfortunately, on October 8th, 2023, surrounded by her family, Emma June passed away. We reconnected with Jamie following her passing. This is represented in Part II.
Emma June, thank you for your bravery, your vulnerability, your strength, your infectious smile, and the incredible impact you’ve had - and will continue to have - on your community. It's an honor to share your story. May you rest in peace.
Part I: Emma June & Jamie (June 7, 2023)
Emma June: I was in middle school when I was diagnosed. I was in the Color Guard, which is part of the high school marching band. I was also into sports. I was just a very active, normal kid.
But then I started noticing this really big bump on my right knee. I thought it was weird. And it was always hurting. We went to urgent care a few times but they weren’t concerned. They said to take Tylenol and ice it, so that’s what we did. But it kept getting bigger and hotter to the touch. We thought “Okay, this probably isn’t normal.” So I went with my Mom and Dad to an orthopedic doctor and he recommended an x-ray. That’s when he saw the tumor. He said, “Oh my gosh, that’s not normal. That’s osteosarcoma. That’s what it looks like in the textbook.”
We were obviously freaking out. They rushed me to the nearest hospital in South Carolina, where we lived at the time. I was there for two days for testing, and then transferred to another hospital, 45 minutes away from where we lived. I was brought straight to the oncology wing, they put my port in that day, and I started chemo that night. So much happened in a small amount of time. It all moved really fast, because they wanted to treat it as quickly as possible. So I did chemo for a couple of months. And then I had limb reconstruction surgery. Mom, can you explain that one? I don’t really know how to explain it.
Jamie: So, they were trying to save her knee. The doctors took her tibia from her calf and put it in her femur. They also used cadaver bones. Vascular doctors had to perform microscopic surgery to repair the blood flow in the tibia area. She had a pretty gnarly scar from her hip to her ankle. They said it was working really well and that she was healing, but when they did another test, the margins weren't clear. So a week or two after that major surgery, they went back in and did a total knee replacement.
In January of 2021, they found more cancer on her sciatic nerve. The only option at that point was to remove it. So they amputated her leg pretty high above the knee, and then had to deal with some assorted infections from that. They had to take all the metal out and use a wound vac for a long time. So there was some shuffling around and reconstructing. Then more chemo after that, to ensure they didn’t miss any small metastases elsewhere.
“February's always been that month…the one we tease about being the worst, the one we wish we could just skip.”
Jamie: Chemo finished in the summer of 2021 and Emma June was cancer free. In 2022 she got a prosthetic and attended high school for the first time in 10th grade. We had spent a decade living in South Carolina at that point, but moved here to Florida, as my family has roots here and Emma June was born here. We’re incredibly close to some of our extended family. It felt like we were living the dream.
2022 was one of Emma June’s best years. She wasn’t in treatment and she felt really good. She was invited to pro-surfer Bethany Hamilton’s retreat, “Beautifully Flawed,” a gathering for girls with limb differences. She went twice to California, meeting girls just like her. It was life-changing for her. She was 14 years old dealing with an amputation and chemotherapy…it was a lot. But meeting those girls who understood her - especially one who had the same cancer at her age - was incredible.
Emma June: But then in February of 2023, the cancer hit again. February's always been that month…the one we tease about being the worst, the one we wish we could just skip. They discovered more cancer in my residual limb and my lungs. This led me into a clinical trial.
Jamie: It was a chemotherapy clinical trial at Johns Hopkins. They did two rounds of treatment, each lasting a month. Then more scans. The drugs used together were experimental. We knew it wasn't the most promising option, but it was available, so she gave it a shot.
Emma June: The clinical trial was different from anything I had experienced. It was a lot of treatment. And we never met anyone else who was in the same trial as I was. We were in our own room. I wanted to meet people, but there weren’t many kids in the hospital at the same time as me.
Jamie: Emma June is pretty nosy, though! She’d go down the hall, look into someone’s doorway and say, “Hey, what’s your name? What are you here for?”
Emma June: Sometimes people didn’t want to talk to me. I’m a lot!
Jamie: It was a unique setup. Hard to describe, really. Instead of a typical hospital room, it was this tiny space with a bed. But, it felt consistent. You got the same care, the same nurses looking out for you every time. Building that bond matters. They're the ones constantly taking care of you, even more than the doctors. They prep you for treatment, give you your meds, get you water, help you to the bathroom, and so much more. This connection was key for us. I'm not sure if people have this experience elsewhere, but it worked really well for us.
Emma June: The only challenge was the distance. We live in Melbourne, Florida, but the clinical trial was in Tampa. So we made the three-hour drive there and back every Monday for a couple of months. Thankfully, no overnight stays were required, which was a relief. It was really nice being able to just go back home after each session. I would rather be sick in my own bed and at home with my mom, my dad, and my dog, than be attached to tubes in the hospital and beeping all the time. I just couldn't get a good night's sleep in there. That's why I preferred being at home. And then I’d feel better by Friday, so I could go out and spend time with my friends and cousins.
Jamie: Unfortunately, the treatment had no effect on her at all. After the two-month clinical trial, she had more lung nodules, and the tumor in her residual limb increased by 50%. So it was still growing despite the chemo.
We shared her results with several different doctors in several different places, including The Cleveland Clinic and Nemours, a children’s hospital in Orlando. We wanted to see if there were any options left. But they all agreed there was nothing else to try. Her cancer has specific mutations, and gene testing on the tumor's makeup revealed a robust blood supply, aggressive nature, and continuous mutation despite various treatments. The doctors are sure there is no cure. So that's where things stand now.
“Cancer makes you see that we often worry too much about the small things in life.”
Emma June: I don’t have time for the usual teenage things. That’s all small stuff, anyway! This experience has turned me into a more straightforward person. I’ll hear my friends talking about something silly, and I’m like, seriously? Is that really the biggest deal in the world? Are you going to die over this? No! You’re going to be fine. Cancer makes you see that we often worry too much about the small things in life.
I try not to dwell too much on everything. I prefer keeping busy and doing different activities throughout the day, like spending time with my family, friends, and my dog. I don’t like to break down and I don’t like crying. But it still happens, of course. Because I usually just suck everything inside until it breaks.
Jamie: I convinced her to see a counselor (despite her kicking and screaming sometimes!). People are talking more about mental health which is great, but it really should be easier to find someone you mesh with in that sort of setting. And insurance is hard to navigate. But now we see the same counselor. Emma June had a session yesterday and at first, she didn’t think she needed to talk. But she felt better afterward. She told Denise that when she's really sad, she lets it out and has a good cry. She handles things quite well.
Since the beginning of all of this, my husband told Emma June that it's okay to feel all her feelings, to be sad, mad, or frustrated. But we always regroup after that happens and approach each day with a better attitude. Because life is short. We have a really strong grasp of that. You're not guaranteed tomorrow. So do what you want to do, say what you need to say now, because tomorrow is not guaranteed. So we're planning the trips and doing all the things. We even got her 70-year-old Nana to get matching tattoos. It was pretty amazing.
Emma June: I make her do everything!
Jamie: Yes, anything for this girl. Anything.
“It’s a whole family affair, not just something that impacts the patient.”
Emma June: I have two younger brothers. Burke is 15 and Sam is 13. We’re pretty close. And we’ve gotten closer. But they’re still just dumb boys who play video games!
Jamie: They really worry about her. They check in on her often. And when Emma June was diagnosed, COVID hit a month later. So we were really worried about germs. But the boys didn’t leave the house for a really long time. Going to the grocery store was a major deal. We’d wear masks and gloves, bring sanitizer, etc, to ensure nothing came home to her. And they had a whole year of virtual school, something we wouldn’t have done otherwise. They’ve given up a lot for this. It’s a whole family affair, not just something that impacts the patient. The boys also help her get down to the ocean, since Emma June has mobility issues. We really love going to the beach.
“We’d always check in on each other and bring each other snacks.”
Emma June: Something unexpected that’s come from this is a lot of tattoos! I have five stars to represent me, my brothers (Burke and Sam), and my two cousins (Eliza and Prestyn). My parents and I all have the same cancer ribbon and a Bible verse tattooed. Mom and I also got our fingerprints and a heart shape with my handwriting. And I got a new one yesterday, on my foot! There’s a story behind it. I met this little boy named Cole at the hospital. He was about three or four years old and had neuroblastoma. We were in the hospital together and underwent treatment at the same time. We'd ride scooters down the hall. His mom became close to me. We’d always check in on each other and bring each other snacks. He passed away the week I had my amputation. It hit me hard. We were so close, and I cared a lot for his family. He was a cancer kid - and the first kid I was close with who died from it - so he’ll always have a special place in my heart. His Mom's actually coming to visit this Friday. They're going to LegoLand. I’m going to surprise her. They recently had a new baby, so I’m so excited to meet her. All happy things.
“I really feel for the little kids who can’t articulate what they’re feeling”
Emma June: I really feel for the little kids who can’t articulate what they’re feeling, because they don’t know how to even name it. Is it a fever? Is it a tummy ache? I’ve talked to a lot of the parents and shared what my side-effects are during chemo, in case it’s helpful. It’s good to share little tips and tricks that helped you, because maybe it’ll help someone else. I’ve also talked with a lot of girls who went through cancer and they shared their own advice with me. So I like to pass all of it on.
Jamie: Having open communication with your doctors is also really important. There’s no such thing as a dumb question. We were very fortunate to have an app where we could talk with our doctors and receive a response quickly. Especially as a parent, you have to advocate for your child. You know your kid better than anyone. You know how they are feeling and what is right and what isn’t. If you have that inkling that something's just not right, you have to listen to it. Even if people say everything's fine, you have to advocate for yourself.
It's also really important to rely on whatever support systems you have around you. Emma June is old enough that she’s aware of everything that’s going on. She has a good understanding of it. But it’s really hard and you can’t do it alone.
We also found a really great community in the pediatric oncology waiting rooms. It's a scary place, but people open up there. It was life-changing for us. They understand what you're going through more than even close friends or family. And we've made great friends with families through Candlelighters of Brevard, an amazing charity supporting families with kids fighting cancer. Because it’s not just about the patient; it's about the whole family. Whether you’re a child or an adult fighting cancer, you can’t do it alone.
Emma June has also connected with remarkable people through her prosthetic organization. Insurance usually covers only one type of prosthetic for a child, but they need more for various activities. She's part of a foundation that provides athletic prosthetics for kids, so that they can do the things they love. She was so active before all of this, so it was really amazing to have this support.
Our communities in both South Carolina and Florida have been so helpful and supportive for our entire family, too. And our employers were really great about working with our schedules when she was first diagnosed. Pediatric cancer is something that just really resonates with parents who have healthy children. Our story is a reminder that this can happen to anyone, and that health is unfortunately not guaranteed.
I wasn’t big on social media before this. But Facebook has been incredible for sharing her story. We post updates and anyone who wants to can share it. For instance, a friend of mine from Florida has an aunt in Idaho who shared it with all her friends, and the page exploded. It’s been a really great way to not only update people on Emma June’s progress, but also raise awareness of pediatric cancer and its challenges.
“Something about it is very freeing”
Jamie: I never, ever thought that this is where my life would be at this point. But something about it is very freeing. And almost exciting. Because we’re here and we’re doing everything. We’re not waiting around. Emma June went to her first music concert recently. We went swimming with manatees. We’ve done a lot of things recently that other people would say “Oh, we don’t have time for that.” But you have to do those things. You have to make the time. And like Emma June said, the littlest things are what make her the happiest. And it’s really not even “things” that bring her joy…it’s time. It’s sharing moments with other people. People make her happy. So do animals.
Emma June: My advice for others like me? Try to stay positive. Which of course is really hard. You’re in pain and you’re sick. You feel awful. You have every reason to not be positive. It sucks. But I encourage people to find the little things in life that bring you joy. And also remember that it’s okay to lean on other people. You have to. Hang out with your friends and your family. Hang out with your dog. Watch funny movies. Read books. Just find those normal, everyday things that you love…and stay there.
PART II: Jamie Kent (December 14, 2023)
“She fought as hard as she could. We’re trying to figure it all out. It's a process, you know?”
Emma June tried to keep a positive outlook despite feeling so sick. But cancer and treatment are painful and they take their toll.
Here are some photos of our family in Hospice House, as we said our final goodbyes.
Maybe we could have tried another trial. But we learned from a friend of ours who went through something similar. He was 17 when Emma June was diagnosed, and we met through a hospital in Greenville. They both had the same kind of cancer, in the same location around their knee and leg. When he found out there was likely no cure for him - since his cancer had metastasized in his lungs (just like Emma June’s) - he chose to continue treatment. He did radiation and tried all sorts of things. He passed away last March.
When I spoke with his mother, one of the things she said they regret most was that he was sick the whole time, up until the very end. His treatments made him so unwell that he didn’t have the energy to visit friends or do things that he probably wanted to do. So we really took this into consideration.
Eventually, Emma June made her decision. She said, "If I only have a small amount of time left, I don’t want to be sick for it.” So we came up with a list of things she wanted to do. We called it her “Now or Never List.” And thanks to several charities and communities and people who helped us, she did every single thing on her list.
She had a “super summer” of trips and lots of music. We saw Ed Sheeran, Taylor Swift, and Adele. And we had a big family reunion in New Jersey where my parents are from. She also graduated high school. When she started hospice, the doctor said she probably wasn’t going to be around in May, and to do whatever it was she wanted to do. Emma June said, “I want to graduate.” And she did. It was the perfect day. The absolute perfect day.
“How do I want Emma June to be remembered?”
Emma June will be remembered as someone who encouraged and supported other people. Her experience made her wiser than most for her age. Kids are kids…they get hung up on little things pretty easily. But when you learn how precious life is and how quickly it can be snatched from you, you figure out what’s really important…which is rarely “things.” It’s making the most of your time. Living your life to the fullest while you can. Her Daddy, my husband, wrote something the day she passed: “Keep your loved ones close. Make sure that no matter what situation we find ourselves in, no one fights alone."
We were so lucky to have incredible doctors and nurses that were in charge of her care. I didn’t know much about hospice at the beginning. I knew of it, but not how it really worked. When Emma June’s oncologist first mentioned it (this was before we found out the clinical trial results), I said absolutely not. And he understood and said it was of course our decision, but that he knew of many others in similar situations who wished they had started hospice sooner. So I thought, okay, here’s a smart person who has been through a lot of different things as a pediatric oncology doctor. So I listened to what he said, took some time to process it, and then we eventually made the decision to do it.
Dr. Lauren Loftis led Emma June’s hospice team (VITAS Healthcare). During one of her final home visits with us, we were sitting out on our front screened-in porch. She came over to us and asked Emma June if she could speak with her. Emma June said, “Yes, but can we stay out here, please? Instead of going inside?” And Dr. Loftis said “Absolutely. I’ve been in an office all day, I’d love to sit outside.” It was a lot of information for us to take in, but she was so clear in how she communicated, and also so compassionate. I felt like we had so many options, and it was really a team decision on how to best manage her symptoms.
We ended up so lucky to have fantastic hospice doctors and nurses. They became our friends. I actually saw one of Emma June’s nurses, Stephanie, last weekend, and I met her Mom. I told her how much I loved her daughter. Not just as a nurse, but as a person. She’s wonderful. I said I wish we had met another way, but that I feel so lucky to know her.
“You really don’t fully realize how devastating this all is until you experience it.”
Emma June was diagnosed right before she turned 14. That’s a delicate age even without cancer, because kids are still trying to figure out who they are. I remember going out in social settings BC (“Before Cancer” as we call it) and Emma June was a bit shy around people that she didn't know. But that changed when she was diagnosed. She wanted to be a part of all the conversations. This meant talking to a lot of adults, lots of doctors, nurses, therapists etc. And we supported this…we always wanted her to advocate for herself. We’d say to her, you’re old enough to verbalize how you’re feeling and what you’re thinking. And I think that really helped her go outside her comfort zone and grow.
Her nurses always called her “HIPAA June,” because she would always ask, “Who’s that? Who’s here? Why are they here? How long are they going to be here for?” And they’d say, “We can’t tell you that, it’s private!” And then she’d say, “Okay, fine, but I’m going to walk down the hall and find out for myself!” She would just stand in the hallways and peep into all the open doorways. And this was during COVID, so she’d of course have her mask on and would just wave at people from afar. She really found her place in the pediatric hall of the hospital. She spoke so clearly with parents and really held space for the things they were feeling for their little ones, that maybe they felt like they couldn’t actually say to their kids. Emma June was able to explain her experience really well, which I think helped them better understand what their own kids might be going through. She met so many families, many of whom we still stay in touch with, and many of whom have lost their loved ones to cancer. You really don’t fully realize how devastating this all is until you experience it.
“I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.”
My advice for someone who has a sick child? Rely heavily on your doctors and make sure you get second and third opinions. Especially because there aren’t many treatment options right now for pediatric cancer, which is a really difficult thing to grapple with. But it’s important.
Pediatric cancer doesn’t get enough research, because there’s such a small percentage of kids who get this sick. But in this day and age, where we have so much technology and so much information, it just shouldn’t be this way. We need more research and treatment options. Later on, when I feel like I’ve gotten myself together, I plan to really advocate for this. I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.
And for the treatments that do exist, there are a lot of side-effects. We know someone who was diagnosed with leukemia when she was 14. She did her treatment and is now almost 30. So she’s an adult, she was able to go to nursing school and became a pediatric oncology nurse, which is amazing. But she now has so many other medical conditions and issues that resulted from her treatment. And also, socially, it’s so hard to be “the sick kid.” You miss out on the development that normally happens in your teenage years.
“We’re all trying to find our way”
Emma June’s brothers are doing okay. They talk about her all the time. We're all trying to find our way. Burke is very quiet and introverted. So we are very mindful in how we speak with him to make sure he feels safe and comfortable. And Sam, my youngest…he’s the silly and loud one. He is usually very clear about his feelings. We always say, “Do things that would make Emma June proud!” And we remind them that if she were still here, she’d be giving them advice and keeping them in line!
We had a celebration of life for Emma June, and it was really hard. I remember speaking with my cousin, and she was really having a difficult time. She said, “I am so close to my brothers. I cannot imagine losing a sibling, especially when you're in these formative years.”
Dealing with my own grief is hard. Because I do think of my boys first, because it's so traumatic for them. It’s made them grow up so much faster than they should have to. So much life experience. But I know I need to take time for myself too, to process it all and grieve.
From The Portrait Project
If you would like to make a donation in honor of Emma June, please visit the website of Candlelighters of Brevard, a wonderful charity that supports families impacted by pediatric cancer, including travel expenses, as cancer treatments are not available locally for everyone.
A message from the Portrait Project team:
A harsh reality of participating in a clinical trial? It’s not guaranteed to work. And when your life's on the line, this can be devastating.
In Part I of this story, you’ll hear from 17-year-old Emma June Kent, and Jamie, her Mom and caregiver. When Emma June was 13-years-old, she was diagnosed with a pediatric cancer called osteosarcoma. Our first conversation occurred in the summer of 2023.
Unfortunately, on October 8th, 2023, surrounded by her family, Emma June passed away. We reconnected with Jamie following her passing. This is represented in Part II.
Emma June, thank you for your bravery, your vulnerability, your strength, your infectious smile, and the incredible impact you’ve had - and will continue to have - on your community. It's an honor to share your story. May you rest in peace.
Part I: Emma June & Jamie (June 7, 2023)
Emma June: I was in middle school when I was diagnosed. I was in the Color Guard, which is part of the high school marching band. I was also into sports. I was just a very active, normal kid.
But then I started noticing this really big bump on my right knee. I thought it was weird. And it was always hurting. We went to urgent care a few times but they weren’t concerned. They said to take Tylenol and ice it, so that’s what we did. But it kept getting bigger and hotter to the touch. We thought “Okay, this probably isn’t normal.” So I went with my Mom and Dad to an orthopedic doctor and he recommended an x-ray. That’s when he saw the tumor. He said, “Oh my gosh, that’s not normal. That’s osteosarcoma. That’s what it looks like in the textbook.”
We were obviously freaking out. They rushed me to the nearest hospital in South Carolina, where we lived at the time. I was there for two days for testing, and then transferred to another hospital, 45 minutes away from where we lived. I was brought straight to the oncology wing, they put my port in that day, and I started chemo that night. So much happened in a small amount of time. It all moved really fast, because they wanted to treat it as quickly as possible. So I did chemo for a couple of months. And then I had limb reconstruction surgery. Mom, can you explain that one? I don’t really know how to explain it.
Jamie: So, they were trying to save her knee. The doctors took her tibia from her calf and put it in her femur. They also used cadaver bones. Vascular doctors had to perform microscopic surgery to repair the blood flow in the tibia area. She had a pretty gnarly scar from her hip to her ankle. They said it was working really well and that she was healing, but when they did another test, the margins weren't clear. So a week or two after that major surgery, they went back in and did a total knee replacement.
In January of 2021, they found more cancer on her sciatic nerve. The only option at that point was to remove it. So they amputated her leg pretty high above the knee, and then had to deal with some assorted infections from that. They had to take all the metal out and use a wound vac for a long time. So there was some shuffling around and reconstructing. Then more chemo after that, to ensure they didn’t miss any small metastases elsewhere.
“February's always been that month…the one we tease about being the worst, the one we wish we could just skip.”
Jamie: Chemo finished in the summer of 2021 and Emma June was cancer free. In 2022 she got a prosthetic and attended high school for the first time in 10th grade. We had spent a decade living in South Carolina at that point, but moved here to Florida, as my family has roots here and Emma June was born here. We’re incredibly close to some of our extended family. It felt like we were living the dream.
2022 was one of Emma June’s best years. She wasn’t in treatment and she felt really good. She was invited to pro-surfer Bethany Hamilton’s retreat, “Beautifully Flawed,” a gathering for girls with limb differences. She went twice to California, meeting girls just like her. It was life-changing for her. She was 14 years old dealing with an amputation and chemotherapy…it was a lot. But meeting those girls who understood her - especially one who had the same cancer at her age - was incredible.
Emma June: But then in February of 2023, the cancer hit again. February's always been that month…the one we tease about being the worst, the one we wish we could just skip. They discovered more cancer in my residual limb and my lungs. This led me into a clinical trial.
Jamie: It was a chemotherapy clinical trial at Johns Hopkins. They did two rounds of treatment, each lasting a month. Then more scans. The drugs used together were experimental. We knew it wasn't the most promising option, but it was available, so she gave it a shot.
Emma June: The clinical trial was different from anything I had experienced. It was a lot of treatment. And we never met anyone else who was in the same trial as I was. We were in our own room. I wanted to meet people, but there weren’t many kids in the hospital at the same time as me.
Jamie: Emma June is pretty nosy, though! She’d go down the hall, look into someone’s doorway and say, “Hey, what’s your name? What are you here for?”
Emma June: Sometimes people didn’t want to talk to me. I’m a lot!
Jamie: It was a unique setup. Hard to describe, really. Instead of a typical hospital room, it was this tiny space with a bed. But, it felt consistent. You got the same care, the same nurses looking out for you every time. Building that bond matters. They're the ones constantly taking care of you, even more than the doctors. They prep you for treatment, give you your meds, get you water, help you to the bathroom, and so much more. This connection was key for us. I'm not sure if people have this experience elsewhere, but it worked really well for us.
Emma June: The only challenge was the distance. We live in Melbourne, Florida, but the clinical trial was in Tampa. So we made the three-hour drive there and back every Monday for a couple of months. Thankfully, no overnight stays were required, which was a relief. It was really nice being able to just go back home after each session. I would rather be sick in my own bed and at home with my mom, my dad, and my dog, than be attached to tubes in the hospital and beeping all the time. I just couldn't get a good night's sleep in there. That's why I preferred being at home. And then I’d feel better by Friday, so I could go out and spend time with my friends and cousins.
Jamie: Unfortunately, the treatment had no effect on her at all. After the two-month clinical trial, she had more lung nodules, and the tumor in her residual limb increased by 50%. So it was still growing despite the chemo.
We shared her results with several different doctors in several different places, including The Cleveland Clinic and Nemours, a children’s hospital in Orlando. We wanted to see if there were any options left. But they all agreed there was nothing else to try. Her cancer has specific mutations, and gene testing on the tumor's makeup revealed a robust blood supply, aggressive nature, and continuous mutation despite various treatments. The doctors are sure there is no cure. So that's where things stand now.
“Cancer makes you see that we often worry too much about the small things in life.”
Emma June: I don’t have time for the usual teenage things. That’s all small stuff, anyway! This experience has turned me into a more straightforward person. I’ll hear my friends talking about something silly, and I’m like, seriously? Is that really the biggest deal in the world? Are you going to die over this? No! You’re going to be fine. Cancer makes you see that we often worry too much about the small things in life.
I try not to dwell too much on everything. I prefer keeping busy and doing different activities throughout the day, like spending time with my family, friends, and my dog. I don’t like to break down and I don’t like crying. But it still happens, of course. Because I usually just suck everything inside until it breaks.
Jamie: I convinced her to see a counselor (despite her kicking and screaming sometimes!). People are talking more about mental health which is great, but it really should be easier to find someone you mesh with in that sort of setting. And insurance is hard to navigate. But now we see the same counselor. Emma June had a session yesterday and at first, she didn’t think she needed to talk. But she felt better afterward. She told Denise that when she's really sad, she lets it out and has a good cry. She handles things quite well.
Since the beginning of all of this, my husband told Emma June that it's okay to feel all her feelings, to be sad, mad, or frustrated. But we always regroup after that happens and approach each day with a better attitude. Because life is short. We have a really strong grasp of that. You're not guaranteed tomorrow. So do what you want to do, say what you need to say now, because tomorrow is not guaranteed. So we're planning the trips and doing all the things. We even got her 70-year-old Nana to get matching tattoos. It was pretty amazing.
Emma June: I make her do everything!
Jamie: Yes, anything for this girl. Anything.
“It’s a whole family affair, not just something that impacts the patient.”
Emma June: I have two younger brothers. Burke is 15 and Sam is 13. We’re pretty close. And we’ve gotten closer. But they’re still just dumb boys who play video games!
Jamie: They really worry about her. They check in on her often. And when Emma June was diagnosed, COVID hit a month later. So we were really worried about germs. But the boys didn’t leave the house for a really long time. Going to the grocery store was a major deal. We’d wear masks and gloves, bring sanitizer, etc, to ensure nothing came home to her. And they had a whole year of virtual school, something we wouldn’t have done otherwise. They’ve given up a lot for this. It’s a whole family affair, not just something that impacts the patient. The boys also help her get down to the ocean, since Emma June has mobility issues. We really love going to the beach.
“We’d always check in on each other and bring each other snacks.”
Emma June: Something unexpected that’s come from this is a lot of tattoos! I have five stars to represent me, my brothers (Burke and Sam), and my two cousins (Eliza and Prestyn). My parents and I all have the same cancer ribbon and a Bible verse tattooed. Mom and I also got our fingerprints and a heart shape with my handwriting. And I got a new one yesterday, on my foot! There’s a story behind it. I met this little boy named Cole at the hospital. He was about three or four years old and had neuroblastoma. We were in the hospital together and underwent treatment at the same time. We'd ride scooters down the hall. His mom became close to me. We’d always check in on each other and bring each other snacks. He passed away the week I had my amputation. It hit me hard. We were so close, and I cared a lot for his family. He was a cancer kid - and the first kid I was close with who died from it - so he’ll always have a special place in my heart. His Mom's actually coming to visit this Friday. They're going to LegoLand. I’m going to surprise her. They recently had a new baby, so I’m so excited to meet her. All happy things.
“I really feel for the little kids who can’t articulate what they’re feeling”
Emma June: I really feel for the little kids who can’t articulate what they’re feeling, because they don’t know how to even name it. Is it a fever? Is it a tummy ache? I’ve talked to a lot of the parents and shared what my side-effects are during chemo, in case it’s helpful. It’s good to share little tips and tricks that helped you, because maybe it’ll help someone else. I’ve also talked with a lot of girls who went through cancer and they shared their own advice with me. So I like to pass all of it on.
Jamie: Having open communication with your doctors is also really important. There’s no such thing as a dumb question. We were very fortunate to have an app where we could talk with our doctors and receive a response quickly. Especially as a parent, you have to advocate for your child. You know your kid better than anyone. You know how they are feeling and what is right and what isn’t. If you have that inkling that something's just not right, you have to listen to it. Even if people say everything's fine, you have to advocate for yourself.
It's also really important to rely on whatever support systems you have around you. Emma June is old enough that she’s aware of everything that’s going on. She has a good understanding of it. But it’s really hard and you can’t do it alone.
We also found a really great community in the pediatric oncology waiting rooms. It's a scary place, but people open up there. It was life-changing for us. They understand what you're going through more than even close friends or family. And we've made great friends with families through Candlelighters of Brevard, an amazing charity supporting families with kids fighting cancer. Because it’s not just about the patient; it's about the whole family. Whether you’re a child or an adult fighting cancer, you can’t do it alone.
Emma June has also connected with remarkable people through her prosthetic organization. Insurance usually covers only one type of prosthetic for a child, but they need more for various activities. She's part of a foundation that provides athletic prosthetics for kids, so that they can do the things they love. She was so active before all of this, so it was really amazing to have this support.
Our communities in both South Carolina and Florida have been so helpful and supportive for our entire family, too. And our employers were really great about working with our schedules when she was first diagnosed. Pediatric cancer is something that just really resonates with parents who have healthy children. Our story is a reminder that this can happen to anyone, and that health is unfortunately not guaranteed.
I wasn’t big on social media before this. But Facebook has been incredible for sharing her story. We post updates and anyone who wants to can share it. For instance, a friend of mine from Florida has an aunt in Idaho who shared it with all her friends, and the page exploded. It’s been a really great way to not only update people on Emma June’s progress, but also raise awareness of pediatric cancer and its challenges.
“Something about it is very freeing”
Jamie: I never, ever thought that this is where my life would be at this point. But something about it is very freeing. And almost exciting. Because we’re here and we’re doing everything. We’re not waiting around. Emma June went to her first music concert recently. We went swimming with manatees. We’ve done a lot of things recently that other people would say “Oh, we don’t have time for that.” But you have to do those things. You have to make the time. And like Emma June said, the littlest things are what make her the happiest. And it’s really not even “things” that bring her joy…it’s time. It’s sharing moments with other people. People make her happy. So do animals.
Emma June: My advice for others like me? Try to stay positive. Which of course is really hard. You’re in pain and you’re sick. You feel awful. You have every reason to not be positive. It sucks. But I encourage people to find the little things in life that bring you joy. And also remember that it’s okay to lean on other people. You have to. Hang out with your friends and your family. Hang out with your dog. Watch funny movies. Read books. Just find those normal, everyday things that you love…and stay there.
PART II: Jamie Kent (December 14, 2023)
“She fought as hard as she could. We’re trying to figure it all out. It's a process, you know?”
Emma June tried to keep a positive outlook despite feeling so sick. But cancer and treatment are painful and they take their toll.
Here are some photos of our family in Hospice House, as we said our final goodbyes.
Maybe we could have tried another trial. But we learned from a friend of ours who went through something similar. He was 17 when Emma June was diagnosed, and we met through a hospital in Greenville. They both had the same kind of cancer, in the same location around their knee and leg. When he found out there was likely no cure for him - since his cancer had metastasized in his lungs (just like Emma June’s) - he chose to continue treatment. He did radiation and tried all sorts of things. He passed away last March.
When I spoke with his mother, one of the things she said they regret most was that he was sick the whole time, up until the very end. His treatments made him so unwell that he didn’t have the energy to visit friends or do things that he probably wanted to do. So we really took this into consideration.
Eventually, Emma June made her decision. She said, "If I only have a small amount of time left, I don’t want to be sick for it.” So we came up with a list of things she wanted to do. We called it her “Now or Never List.” And thanks to several charities and communities and people who helped us, she did every single thing on her list.
She had a “super summer” of trips and lots of music. We saw Ed Sheeran, Taylor Swift, and Adele. And we had a big family reunion in New Jersey where my parents are from. She also graduated high school. When she started hospice, the doctor said she probably wasn’t going to be around in May, and to do whatever it was she wanted to do. Emma June said, “I want to graduate.” And she did. It was the perfect day. The absolute perfect day.
“How do I want Emma June to be remembered?”
Emma June will be remembered as someone who encouraged and supported other people. Her experience made her wiser than most for her age. Kids are kids…they get hung up on little things pretty easily. But when you learn how precious life is and how quickly it can be snatched from you, you figure out what’s really important…which is rarely “things.” It’s making the most of your time. Living your life to the fullest while you can. Her Daddy, my husband, wrote something the day she passed: “Keep your loved ones close. Make sure that no matter what situation we find ourselves in, no one fights alone."
We were so lucky to have incredible doctors and nurses that were in charge of her care. I didn’t know much about hospice at the beginning. I knew of it, but not how it really worked. When Emma June’s oncologist first mentioned it (this was before we found out the clinical trial results), I said absolutely not. And he understood and said it was of course our decision, but that he knew of many others in similar situations who wished they had started hospice sooner. So I thought, okay, here’s a smart person who has been through a lot of different things as a pediatric oncology doctor. So I listened to what he said, took some time to process it, and then we eventually made the decision to do it.
Dr. Lauren Loftis led Emma June’s hospice team (VITAS Healthcare). During one of her final home visits with us, we were sitting out on our front screened-in porch. She came over to us and asked Emma June if she could speak with her. Emma June said, “Yes, but can we stay out here, please? Instead of going inside?” And Dr. Loftis said “Absolutely. I’ve been in an office all day, I’d love to sit outside.” It was a lot of information for us to take in, but she was so clear in how she communicated, and also so compassionate. I felt like we had so many options, and it was really a team decision on how to best manage her symptoms.
We ended up so lucky to have fantastic hospice doctors and nurses. They became our friends. I actually saw one of Emma June’s nurses, Stephanie, last weekend, and I met her Mom. I told her how much I loved her daughter. Not just as a nurse, but as a person. She’s wonderful. I said I wish we had met another way, but that I feel so lucky to know her.
“You really don’t fully realize how devastating this all is until you experience it.”
Emma June was diagnosed right before she turned 14. That’s a delicate age even without cancer, because kids are still trying to figure out who they are. I remember going out in social settings BC (“Before Cancer” as we call it) and Emma June was a bit shy around people that she didn't know. But that changed when she was diagnosed. She wanted to be a part of all the conversations. This meant talking to a lot of adults, lots of doctors, nurses, therapists etc. And we supported this…we always wanted her to advocate for herself. We’d say to her, you’re old enough to verbalize how you’re feeling and what you’re thinking. And I think that really helped her go outside her comfort zone and grow.
Her nurses always called her “HIPAA June,” because she would always ask, “Who’s that? Who’s here? Why are they here? How long are they going to be here for?” And they’d say, “We can’t tell you that, it’s private!” And then she’d say, “Okay, fine, but I’m going to walk down the hall and find out for myself!” She would just stand in the hallways and peep into all the open doorways. And this was during COVID, so she’d of course have her mask on and would just wave at people from afar. She really found her place in the pediatric hall of the hospital. She spoke so clearly with parents and really held space for the things they were feeling for their little ones, that maybe they felt like they couldn’t actually say to their kids. Emma June was able to explain her experience really well, which I think helped them better understand what their own kids might be going through. She met so many families, many of whom we still stay in touch with, and many of whom have lost their loved ones to cancer. You really don’t fully realize how devastating this all is until you experience it.
“I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.”
My advice for someone who has a sick child? Rely heavily on your doctors and make sure you get second and third opinions. Especially because there aren’t many treatment options right now for pediatric cancer, which is a really difficult thing to grapple with. But it’s important.
Pediatric cancer doesn’t get enough research, because there’s such a small percentage of kids who get this sick. But in this day and age, where we have so much technology and so much information, it just shouldn’t be this way. We need more research and treatment options. Later on, when I feel like I’ve gotten myself together, I plan to really advocate for this. I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.
And for the treatments that do exist, there are a lot of side-effects. We know someone who was diagnosed with leukemia when she was 14. She did her treatment and is now almost 30. So she’s an adult, she was able to go to nursing school and became a pediatric oncology nurse, which is amazing. But she now has so many other medical conditions and issues that resulted from her treatment. And also, socially, it’s so hard to be “the sick kid.” You miss out on the development that normally happens in your teenage years.
“We’re all trying to find our way”
Emma June’s brothers are doing okay. They talk about her all the time. We're all trying to find our way. Burke is very quiet and introverted. So we are very mindful in how we speak with him to make sure he feels safe and comfortable. And Sam, my youngest…he’s the silly and loud one. He is usually very clear about his feelings. We always say, “Do things that would make Emma June proud!” And we remind them that if she were still here, she’d be giving them advice and keeping them in line!
We had a celebration of life for Emma June, and it was really hard. I remember speaking with my cousin, and she was really having a difficult time. She said, “I am so close to my brothers. I cannot imagine losing a sibling, especially when you're in these formative years.”
Dealing with my own grief is hard. Because I do think of my boys first, because it's so traumatic for them. It’s made them grow up so much faster than they should have to. So much life experience. But I know I need to take time for myself too, to process it all and grieve.
From The Portrait Project
If you would like to make a donation in honor of Emma June, please visit the website of Candlelighters of Brevard, a wonderful charity that supports families impacted by pediatric cancer, including travel expenses, as cancer treatments are not available locally for everyone.
A message from the Portrait Project team:
A harsh reality of participating in a clinical trial? It’s not guaranteed to work. And when your life's on the line, this can be devastating.
In Part I of this story, you’ll hear from 17-year-old Emma June Kent, and Jamie, her Mom and caregiver. When Emma June was 13-years-old, she was diagnosed with a pediatric cancer called osteosarcoma. Our first conversation occurred in the summer of 2023.
Unfortunately, on October 8th, 2023, surrounded by her family, Emma June passed away. We reconnected with Jamie following her passing. This is represented in Part II.
Emma June, thank you for your bravery, your vulnerability, your strength, your infectious smile, and the incredible impact you’ve had - and will continue to have - on your community. It's an honor to share your story. May you rest in peace.
Part I: Emma June & Jamie (June 7, 2023)
Emma June: I was in middle school when I was diagnosed. I was in the Color Guard, which is part of the high school marching band. I was also into sports. I was just a very active, normal kid.
But then I started noticing this really big bump on my right knee. I thought it was weird. And it was always hurting. We went to urgent care a few times but they weren’t concerned. They said to take Tylenol and ice it, so that’s what we did. But it kept getting bigger and hotter to the touch. We thought “Okay, this probably isn’t normal.” So I went with my Mom and Dad to an orthopedic doctor and he recommended an x-ray. That’s when he saw the tumor. He said, “Oh my gosh, that’s not normal. That’s osteosarcoma. That’s what it looks like in the textbook.”
We were obviously freaking out. They rushed me to the nearest hospital in South Carolina, where we lived at the time. I was there for two days for testing, and then transferred to another hospital, 45 minutes away from where we lived. I was brought straight to the oncology wing, they put my port in that day, and I started chemo that night. So much happened in a small amount of time. It all moved really fast, because they wanted to treat it as quickly as possible. So I did chemo for a couple of months. And then I had limb reconstruction surgery. Mom, can you explain that one? I don’t really know how to explain it.
Jamie: So, they were trying to save her knee. The doctors took her tibia from her calf and put it in her femur. They also used cadaver bones. Vascular doctors had to perform microscopic surgery to repair the blood flow in the tibia area. She had a pretty gnarly scar from her hip to her ankle. They said it was working really well and that she was healing, but when they did another test, the margins weren't clear. So a week or two after that major surgery, they went back in and did a total knee replacement.
In January of 2021, they found more cancer on her sciatic nerve. The only option at that point was to remove it. So they amputated her leg pretty high above the knee, and then had to deal with some assorted infections from that. They had to take all the metal out and use a wound vac for a long time. So there was some shuffling around and reconstructing. Then more chemo after that, to ensure they didn’t miss any small metastases elsewhere.
“February's always been that month…the one we tease about being the worst, the one we wish we could just skip.”
Jamie: Chemo finished in the summer of 2021 and Emma June was cancer free. In 2022 she got a prosthetic and attended high school for the first time in 10th grade. We had spent a decade living in South Carolina at that point, but moved here to Florida, as my family has roots here and Emma June was born here. We’re incredibly close to some of our extended family. It felt like we were living the dream.
2022 was one of Emma June’s best years. She wasn’t in treatment and she felt really good. She was invited to pro-surfer Bethany Hamilton’s retreat, “Beautifully Flawed,” a gathering for girls with limb differences. She went twice to California, meeting girls just like her. It was life-changing for her. She was 14 years old dealing with an amputation and chemotherapy…it was a lot. But meeting those girls who understood her - especially one who had the same cancer at her age - was incredible.
Emma June: But then in February of 2023, the cancer hit again. February's always been that month…the one we tease about being the worst, the one we wish we could just skip. They discovered more cancer in my residual limb and my lungs. This led me into a clinical trial.
Jamie: It was a chemotherapy clinical trial at Johns Hopkins. They did two rounds of treatment, each lasting a month. Then more scans. The drugs used together were experimental. We knew it wasn't the most promising option, but it was available, so she gave it a shot.
Emma June: The clinical trial was different from anything I had experienced. It was a lot of treatment. And we never met anyone else who was in the same trial as I was. We were in our own room. I wanted to meet people, but there weren’t many kids in the hospital at the same time as me.
Jamie: Emma June is pretty nosy, though! She’d go down the hall, look into someone’s doorway and say, “Hey, what’s your name? What are you here for?”
Emma June: Sometimes people didn’t want to talk to me. I’m a lot!
Jamie: It was a unique setup. Hard to describe, really. Instead of a typical hospital room, it was this tiny space with a bed. But, it felt consistent. You got the same care, the same nurses looking out for you every time. Building that bond matters. They're the ones constantly taking care of you, even more than the doctors. They prep you for treatment, give you your meds, get you water, help you to the bathroom, and so much more. This connection was key for us. I'm not sure if people have this experience elsewhere, but it worked really well for us.
Emma June: The only challenge was the distance. We live in Melbourne, Florida, but the clinical trial was in Tampa. So we made the three-hour drive there and back every Monday for a couple of months. Thankfully, no overnight stays were required, which was a relief. It was really nice being able to just go back home after each session. I would rather be sick in my own bed and at home with my mom, my dad, and my dog, than be attached to tubes in the hospital and beeping all the time. I just couldn't get a good night's sleep in there. That's why I preferred being at home. And then I’d feel better by Friday, so I could go out and spend time with my friends and cousins.
Jamie: Unfortunately, the treatment had no effect on her at all. After the two-month clinical trial, she had more lung nodules, and the tumor in her residual limb increased by 50%. So it was still growing despite the chemo.
We shared her results with several different doctors in several different places, including The Cleveland Clinic and Nemours, a children’s hospital in Orlando. We wanted to see if there were any options left. But they all agreed there was nothing else to try. Her cancer has specific mutations, and gene testing on the tumor's makeup revealed a robust blood supply, aggressive nature, and continuous mutation despite various treatments. The doctors are sure there is no cure. So that's where things stand now.
“Cancer makes you see that we often worry too much about the small things in life.”
Emma June: I don’t have time for the usual teenage things. That’s all small stuff, anyway! This experience has turned me into a more straightforward person. I’ll hear my friends talking about something silly, and I’m like, seriously? Is that really the biggest deal in the world? Are you going to die over this? No! You’re going to be fine. Cancer makes you see that we often worry too much about the small things in life.
I try not to dwell too much on everything. I prefer keeping busy and doing different activities throughout the day, like spending time with my family, friends, and my dog. I don’t like to break down and I don’t like crying. But it still happens, of course. Because I usually just suck everything inside until it breaks.
Jamie: I convinced her to see a counselor (despite her kicking and screaming sometimes!). People are talking more about mental health which is great, but it really should be easier to find someone you mesh with in that sort of setting. And insurance is hard to navigate. But now we see the same counselor. Emma June had a session yesterday and at first, she didn’t think she needed to talk. But she felt better afterward. She told Denise that when she's really sad, she lets it out and has a good cry. She handles things quite well.
Since the beginning of all of this, my husband told Emma June that it's okay to feel all her feelings, to be sad, mad, or frustrated. But we always regroup after that happens and approach each day with a better attitude. Because life is short. We have a really strong grasp of that. You're not guaranteed tomorrow. So do what you want to do, say what you need to say now, because tomorrow is not guaranteed. So we're planning the trips and doing all the things. We even got her 70-year-old Nana to get matching tattoos. It was pretty amazing.
Emma June: I make her do everything!
Jamie: Yes, anything for this girl. Anything.
“It’s a whole family affair, not just something that impacts the patient.”
Emma June: I have two younger brothers. Burke is 15 and Sam is 13. We’re pretty close. And we’ve gotten closer. But they’re still just dumb boys who play video games!
Jamie: They really worry about her. They check in on her often. And when Emma June was diagnosed, COVID hit a month later. So we were really worried about germs. But the boys didn’t leave the house for a really long time. Going to the grocery store was a major deal. We’d wear masks and gloves, bring sanitizer, etc, to ensure nothing came home to her. And they had a whole year of virtual school, something we wouldn’t have done otherwise. They’ve given up a lot for this. It’s a whole family affair, not just something that impacts the patient. The boys also help her get down to the ocean, since Emma June has mobility issues. We really love going to the beach.
“We’d always check in on each other and bring each other snacks.”
Emma June: Something unexpected that’s come from this is a lot of tattoos! I have five stars to represent me, my brothers (Burke and Sam), and my two cousins (Eliza and Prestyn). My parents and I all have the same cancer ribbon and a Bible verse tattooed. Mom and I also got our fingerprints and a heart shape with my handwriting. And I got a new one yesterday, on my foot! There’s a story behind it. I met this little boy named Cole at the hospital. He was about three or four years old and had neuroblastoma. We were in the hospital together and underwent treatment at the same time. We'd ride scooters down the hall. His mom became close to me. We’d always check in on each other and bring each other snacks. He passed away the week I had my amputation. It hit me hard. We were so close, and I cared a lot for his family. He was a cancer kid - and the first kid I was close with who died from it - so he’ll always have a special place in my heart. His Mom's actually coming to visit this Friday. They're going to LegoLand. I’m going to surprise her. They recently had a new baby, so I’m so excited to meet her. All happy things.
“I really feel for the little kids who can’t articulate what they’re feeling”
Emma June: I really feel for the little kids who can’t articulate what they’re feeling, because they don’t know how to even name it. Is it a fever? Is it a tummy ache? I’ve talked to a lot of the parents and shared what my side-effects are during chemo, in case it’s helpful. It’s good to share little tips and tricks that helped you, because maybe it’ll help someone else. I’ve also talked with a lot of girls who went through cancer and they shared their own advice with me. So I like to pass all of it on.
Jamie: Having open communication with your doctors is also really important. There’s no such thing as a dumb question. We were very fortunate to have an app where we could talk with our doctors and receive a response quickly. Especially as a parent, you have to advocate for your child. You know your kid better than anyone. You know how they are feeling and what is right and what isn’t. If you have that inkling that something's just not right, you have to listen to it. Even if people say everything's fine, you have to advocate for yourself.
It's also really important to rely on whatever support systems you have around you. Emma June is old enough that she’s aware of everything that’s going on. She has a good understanding of it. But it’s really hard and you can’t do it alone.
We also found a really great community in the pediatric oncology waiting rooms. It's a scary place, but people open up there. It was life-changing for us. They understand what you're going through more than even close friends or family. And we've made great friends with families through Candlelighters of Brevard, an amazing charity supporting families with kids fighting cancer. Because it’s not just about the patient; it's about the whole family. Whether you’re a child or an adult fighting cancer, you can’t do it alone.
Emma June has also connected with remarkable people through her prosthetic organization. Insurance usually covers only one type of prosthetic for a child, but they need more for various activities. She's part of a foundation that provides athletic prosthetics for kids, so that they can do the things they love. She was so active before all of this, so it was really amazing to have this support.
Our communities in both South Carolina and Florida have been so helpful and supportive for our entire family, too. And our employers were really great about working with our schedules when she was first diagnosed. Pediatric cancer is something that just really resonates with parents who have healthy children. Our story is a reminder that this can happen to anyone, and that health is unfortunately not guaranteed.
I wasn’t big on social media before this. But Facebook has been incredible for sharing her story. We post updates and anyone who wants to can share it. For instance, a friend of mine from Florida has an aunt in Idaho who shared it with all her friends, and the page exploded. It’s been a really great way to not only update people on Emma June’s progress, but also raise awareness of pediatric cancer and its challenges.
“Something about it is very freeing”
Jamie: I never, ever thought that this is where my life would be at this point. But something about it is very freeing. And almost exciting. Because we’re here and we’re doing everything. We’re not waiting around. Emma June went to her first music concert recently. We went swimming with manatees. We’ve done a lot of things recently that other people would say “Oh, we don’t have time for that.” But you have to do those things. You have to make the time. And like Emma June said, the littlest things are what make her the happiest. And it’s really not even “things” that bring her joy…it’s time. It’s sharing moments with other people. People make her happy. So do animals.
Emma June: My advice for others like me? Try to stay positive. Which of course is really hard. You’re in pain and you’re sick. You feel awful. You have every reason to not be positive. It sucks. But I encourage people to find the little things in life that bring you joy. And also remember that it’s okay to lean on other people. You have to. Hang out with your friends and your family. Hang out with your dog. Watch funny movies. Read books. Just find those normal, everyday things that you love…and stay there.
PART II: Jamie Kent (December 14, 2023)
“She fought as hard as she could. We’re trying to figure it all out. It's a process, you know?”
Emma June tried to keep a positive outlook despite feeling so sick. But cancer and treatment are painful and they take their toll.
Here are some photos of our family in Hospice House, as we said our final goodbyes.
Maybe we could have tried another trial. But we learned from a friend of ours who went through something similar. He was 17 when Emma June was diagnosed, and we met through a hospital in Greenville. They both had the same kind of cancer, in the same location around their knee and leg. When he found out there was likely no cure for him - since his cancer had metastasized in his lungs (just like Emma June’s) - he chose to continue treatment. He did radiation and tried all sorts of things. He passed away last March.
When I spoke with his mother, one of the things she said they regret most was that he was sick the whole time, up until the very end. His treatments made him so unwell that he didn’t have the energy to visit friends or do things that he probably wanted to do. So we really took this into consideration.
Eventually, Emma June made her decision. She said, "If I only have a small amount of time left, I don’t want to be sick for it.” So we came up with a list of things she wanted to do. We called it her “Now or Never List.” And thanks to several charities and communities and people who helped us, she did every single thing on her list.
She had a “super summer” of trips and lots of music. We saw Ed Sheeran, Taylor Swift, and Adele. And we had a big family reunion in New Jersey where my parents are from. She also graduated high school. When she started hospice, the doctor said she probably wasn’t going to be around in May, and to do whatever it was she wanted to do. Emma June said, “I want to graduate.” And she did. It was the perfect day. The absolute perfect day.
“How do I want Emma June to be remembered?”
Emma June will be remembered as someone who encouraged and supported other people. Her experience made her wiser than most for her age. Kids are kids…they get hung up on little things pretty easily. But when you learn how precious life is and how quickly it can be snatched from you, you figure out what’s really important…which is rarely “things.” It’s making the most of your time. Living your life to the fullest while you can. Her Daddy, my husband, wrote something the day she passed: “Keep your loved ones close. Make sure that no matter what situation we find ourselves in, no one fights alone."
We were so lucky to have incredible doctors and nurses that were in charge of her care. I didn’t know much about hospice at the beginning. I knew of it, but not how it really worked. When Emma June’s oncologist first mentioned it (this was before we found out the clinical trial results), I said absolutely not. And he understood and said it was of course our decision, but that he knew of many others in similar situations who wished they had started hospice sooner. So I thought, okay, here’s a smart person who has been through a lot of different things as a pediatric oncology doctor. So I listened to what he said, took some time to process it, and then we eventually made the decision to do it.
Dr. Lauren Loftis led Emma June’s hospice team (VITAS Healthcare). During one of her final home visits with us, we were sitting out on our front screened-in porch. She came over to us and asked Emma June if she could speak with her. Emma June said, “Yes, but can we stay out here, please? Instead of going inside?” And Dr. Loftis said “Absolutely. I’ve been in an office all day, I’d love to sit outside.” It was a lot of information for us to take in, but she was so clear in how she communicated, and also so compassionate. I felt like we had so many options, and it was really a team decision on how to best manage her symptoms.
We ended up so lucky to have fantastic hospice doctors and nurses. They became our friends. I actually saw one of Emma June’s nurses, Stephanie, last weekend, and I met her Mom. I told her how much I loved her daughter. Not just as a nurse, but as a person. She’s wonderful. I said I wish we had met another way, but that I feel so lucky to know her.
“You really don’t fully realize how devastating this all is until you experience it.”
Emma June was diagnosed right before she turned 14. That’s a delicate age even without cancer, because kids are still trying to figure out who they are. I remember going out in social settings BC (“Before Cancer” as we call it) and Emma June was a bit shy around people that she didn't know. But that changed when she was diagnosed. She wanted to be a part of all the conversations. This meant talking to a lot of adults, lots of doctors, nurses, therapists etc. And we supported this…we always wanted her to advocate for herself. We’d say to her, you’re old enough to verbalize how you’re feeling and what you’re thinking. And I think that really helped her go outside her comfort zone and grow.
Her nurses always called her “HIPAA June,” because she would always ask, “Who’s that? Who’s here? Why are they here? How long are they going to be here for?” And they’d say, “We can’t tell you that, it’s private!” And then she’d say, “Okay, fine, but I’m going to walk down the hall and find out for myself!” She would just stand in the hallways and peep into all the open doorways. And this was during COVID, so she’d of course have her mask on and would just wave at people from afar. She really found her place in the pediatric hall of the hospital. She spoke so clearly with parents and really held space for the things they were feeling for their little ones, that maybe they felt like they couldn’t actually say to their kids. Emma June was able to explain her experience really well, which I think helped them better understand what their own kids might be going through. She met so many families, many of whom we still stay in touch with, and many of whom have lost their loved ones to cancer. You really don’t fully realize how devastating this all is until you experience it.
“I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.”
My advice for someone who has a sick child? Rely heavily on your doctors and make sure you get second and third opinions. Especially because there aren’t many treatment options right now for pediatric cancer, which is a really difficult thing to grapple with. But it’s important.
Pediatric cancer doesn’t get enough research, because there’s such a small percentage of kids who get this sick. But in this day and age, where we have so much technology and so much information, it just shouldn’t be this way. We need more research and treatment options. Later on, when I feel like I’ve gotten myself together, I plan to really advocate for this. I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.
And for the treatments that do exist, there are a lot of side-effects. We know someone who was diagnosed with leukemia when she was 14. She did her treatment and is now almost 30. So she’s an adult, she was able to go to nursing school and became a pediatric oncology nurse, which is amazing. But she now has so many other medical conditions and issues that resulted from her treatment. And also, socially, it’s so hard to be “the sick kid.” You miss out on the development that normally happens in your teenage years.
“We’re all trying to find our way”
Emma June’s brothers are doing okay. They talk about her all the time. We're all trying to find our way. Burke is very quiet and introverted. So we are very mindful in how we speak with him to make sure he feels safe and comfortable. And Sam, my youngest…he’s the silly and loud one. He is usually very clear about his feelings. We always say, “Do things that would make Emma June proud!” And we remind them that if she were still here, she’d be giving them advice and keeping them in line!
We had a celebration of life for Emma June, and it was really hard. I remember speaking with my cousin, and she was really having a difficult time. She said, “I am so close to my brothers. I cannot imagine losing a sibling, especially when you're in these formative years.”
Dealing with my own grief is hard. Because I do think of my boys first, because it's so traumatic for them. It’s made them grow up so much faster than they should have to. So much life experience. But I know I need to take time for myself too, to process it all and grieve.
From The Portrait Project
If you would like to make a donation in honor of Emma June, please visit the website of Candlelighters of Brevard, a wonderful charity that supports families impacted by pediatric cancer, including travel expenses, as cancer treatments are not available locally for everyone.
A message from the Portrait Project team:
A harsh reality of participating in a clinical trial? It’s not guaranteed to work. And when your life's on the line, this can be devastating.
In Part I of this story, you’ll hear from 17-year-old Emma June Kent, and Jamie, her Mom and caregiver. When Emma June was 13-years-old, she was diagnosed with a pediatric cancer called osteosarcoma. Our first conversation occurred in the summer of 2023.
Unfortunately, on October 8th, 2023, surrounded by her family, Emma June passed away. We reconnected with Jamie following her passing. This is represented in Part II.
Emma June, thank you for your bravery, your vulnerability, your strength, your infectious smile, and the incredible impact you’ve had - and will continue to have - on your community. It's an honor to share your story. May you rest in peace.
Part I: Emma June & Jamie (June 7, 2023)
Emma June: I was in middle school when I was diagnosed. I was in the Color Guard, which is part of the high school marching band. I was also into sports. I was just a very active, normal kid.
But then I started noticing this really big bump on my right knee. I thought it was weird. And it was always hurting. We went to urgent care a few times but they weren’t concerned. They said to take Tylenol and ice it, so that’s what we did. But it kept getting bigger and hotter to the touch. We thought “Okay, this probably isn’t normal.” So I went with my Mom and Dad to an orthopedic doctor and he recommended an x-ray. That’s when he saw the tumor. He said, “Oh my gosh, that’s not normal. That’s osteosarcoma. That’s what it looks like in the textbook.”
We were obviously freaking out. They rushed me to the nearest hospital in South Carolina, where we lived at the time. I was there for two days for testing, and then transferred to another hospital, 45 minutes away from where we lived. I was brought straight to the oncology wing, they put my port in that day, and I started chemo that night. So much happened in a small amount of time. It all moved really fast, because they wanted to treat it as quickly as possible. So I did chemo for a couple of months. And then I had limb reconstruction surgery. Mom, can you explain that one? I don’t really know how to explain it.
Jamie: So, they were trying to save her knee. The doctors took her tibia from her calf and put it in her femur. They also used cadaver bones. Vascular doctors had to perform microscopic surgery to repair the blood flow in the tibia area. She had a pretty gnarly scar from her hip to her ankle. They said it was working really well and that she was healing, but when they did another test, the margins weren't clear. So a week or two after that major surgery, they went back in and did a total knee replacement.
In January of 2021, they found more cancer on her sciatic nerve. The only option at that point was to remove it. So they amputated her leg pretty high above the knee, and then had to deal with some assorted infections from that. They had to take all the metal out and use a wound vac for a long time. So there was some shuffling around and reconstructing. Then more chemo after that, to ensure they didn’t miss any small metastases elsewhere.
“February's always been that month…the one we tease about being the worst, the one we wish we could just skip.”
Jamie: Chemo finished in the summer of 2021 and Emma June was cancer free. In 2022 she got a prosthetic and attended high school for the first time in 10th grade. We had spent a decade living in South Carolina at that point, but moved here to Florida, as my family has roots here and Emma June was born here. We’re incredibly close to some of our extended family. It felt like we were living the dream.
2022 was one of Emma June’s best years. She wasn’t in treatment and she felt really good. She was invited to pro-surfer Bethany Hamilton’s retreat, “Beautifully Flawed,” a gathering for girls with limb differences. She went twice to California, meeting girls just like her. It was life-changing for her. She was 14 years old dealing with an amputation and chemotherapy…it was a lot. But meeting those girls who understood her - especially one who had the same cancer at her age - was incredible.
Emma June: But then in February of 2023, the cancer hit again. February's always been that month…the one we tease about being the worst, the one we wish we could just skip. They discovered more cancer in my residual limb and my lungs. This led me into a clinical trial.
Jamie: It was a chemotherapy clinical trial at Johns Hopkins. They did two rounds of treatment, each lasting a month. Then more scans. The drugs used together were experimental. We knew it wasn't the most promising option, but it was available, so she gave it a shot.
Emma June: The clinical trial was different from anything I had experienced. It was a lot of treatment. And we never met anyone else who was in the same trial as I was. We were in our own room. I wanted to meet people, but there weren’t many kids in the hospital at the same time as me.
Jamie: Emma June is pretty nosy, though! She’d go down the hall, look into someone’s doorway and say, “Hey, what’s your name? What are you here for?”
Emma June: Sometimes people didn’t want to talk to me. I’m a lot!
Jamie: It was a unique setup. Hard to describe, really. Instead of a typical hospital room, it was this tiny space with a bed. But, it felt consistent. You got the same care, the same nurses looking out for you every time. Building that bond matters. They're the ones constantly taking care of you, even more than the doctors. They prep you for treatment, give you your meds, get you water, help you to the bathroom, and so much more. This connection was key for us. I'm not sure if people have this experience elsewhere, but it worked really well for us.
Emma June: The only challenge was the distance. We live in Melbourne, Florida, but the clinical trial was in Tampa. So we made the three-hour drive there and back every Monday for a couple of months. Thankfully, no overnight stays were required, which was a relief. It was really nice being able to just go back home after each session. I would rather be sick in my own bed and at home with my mom, my dad, and my dog, than be attached to tubes in the hospital and beeping all the time. I just couldn't get a good night's sleep in there. That's why I preferred being at home. And then I’d feel better by Friday, so I could go out and spend time with my friends and cousins.
Jamie: Unfortunately, the treatment had no effect on her at all. After the two-month clinical trial, she had more lung nodules, and the tumor in her residual limb increased by 50%. So it was still growing despite the chemo.
We shared her results with several different doctors in several different places, including The Cleveland Clinic and Nemours, a children’s hospital in Orlando. We wanted to see if there were any options left. But they all agreed there was nothing else to try. Her cancer has specific mutations, and gene testing on the tumor's makeup revealed a robust blood supply, aggressive nature, and continuous mutation despite various treatments. The doctors are sure there is no cure. So that's where things stand now.
“Cancer makes you see that we often worry too much about the small things in life.”
Emma June: I don’t have time for the usual teenage things. That’s all small stuff, anyway! This experience has turned me into a more straightforward person. I’ll hear my friends talking about something silly, and I’m like, seriously? Is that really the biggest deal in the world? Are you going to die over this? No! You’re going to be fine. Cancer makes you see that we often worry too much about the small things in life.
I try not to dwell too much on everything. I prefer keeping busy and doing different activities throughout the day, like spending time with my family, friends, and my dog. I don’t like to break down and I don’t like crying. But it still happens, of course. Because I usually just suck everything inside until it breaks.
Jamie: I convinced her to see a counselor (despite her kicking and screaming sometimes!). People are talking more about mental health which is great, but it really should be easier to find someone you mesh with in that sort of setting. And insurance is hard to navigate. But now we see the same counselor. Emma June had a session yesterday and at first, she didn’t think she needed to talk. But she felt better afterward. She told Denise that when she's really sad, she lets it out and has a good cry. She handles things quite well.
Since the beginning of all of this, my husband told Emma June that it's okay to feel all her feelings, to be sad, mad, or frustrated. But we always regroup after that happens and approach each day with a better attitude. Because life is short. We have a really strong grasp of that. You're not guaranteed tomorrow. So do what you want to do, say what you need to say now, because tomorrow is not guaranteed. So we're planning the trips and doing all the things. We even got her 70-year-old Nana to get matching tattoos. It was pretty amazing.
Emma June: I make her do everything!
Jamie: Yes, anything for this girl. Anything.
“It’s a whole family affair, not just something that impacts the patient.”
Emma June: I have two younger brothers. Burke is 15 and Sam is 13. We’re pretty close. And we’ve gotten closer. But they’re still just dumb boys who play video games!
Jamie: They really worry about her. They check in on her often. And when Emma June was diagnosed, COVID hit a month later. So we were really worried about germs. But the boys didn’t leave the house for a really long time. Going to the grocery store was a major deal. We’d wear masks and gloves, bring sanitizer, etc, to ensure nothing came home to her. And they had a whole year of virtual school, something we wouldn’t have done otherwise. They’ve given up a lot for this. It’s a whole family affair, not just something that impacts the patient. The boys also help her get down to the ocean, since Emma June has mobility issues. We really love going to the beach.
“We’d always check in on each other and bring each other snacks.”
Emma June: Something unexpected that’s come from this is a lot of tattoos! I have five stars to represent me, my brothers (Burke and Sam), and my two cousins (Eliza and Prestyn). My parents and I all have the same cancer ribbon and a Bible verse tattooed. Mom and I also got our fingerprints and a heart shape with my handwriting. And I got a new one yesterday, on my foot! There’s a story behind it. I met this little boy named Cole at the hospital. He was about three or four years old and had neuroblastoma. We were in the hospital together and underwent treatment at the same time. We'd ride scooters down the hall. His mom became close to me. We’d always check in on each other and bring each other snacks. He passed away the week I had my amputation. It hit me hard. We were so close, and I cared a lot for his family. He was a cancer kid - and the first kid I was close with who died from it - so he’ll always have a special place in my heart. His Mom's actually coming to visit this Friday. They're going to LegoLand. I’m going to surprise her. They recently had a new baby, so I’m so excited to meet her. All happy things.
“I really feel for the little kids who can’t articulate what they’re feeling”
Emma June: I really feel for the little kids who can’t articulate what they’re feeling, because they don’t know how to even name it. Is it a fever? Is it a tummy ache? I’ve talked to a lot of the parents and shared what my side-effects are during chemo, in case it’s helpful. It’s good to share little tips and tricks that helped you, because maybe it’ll help someone else. I’ve also talked with a lot of girls who went through cancer and they shared their own advice with me. So I like to pass all of it on.
Jamie: Having open communication with your doctors is also really important. There’s no such thing as a dumb question. We were very fortunate to have an app where we could talk with our doctors and receive a response quickly. Especially as a parent, you have to advocate for your child. You know your kid better than anyone. You know how they are feeling and what is right and what isn’t. If you have that inkling that something's just not right, you have to listen to it. Even if people say everything's fine, you have to advocate for yourself.
It's also really important to rely on whatever support systems you have around you. Emma June is old enough that she’s aware of everything that’s going on. She has a good understanding of it. But it’s really hard and you can’t do it alone.
We also found a really great community in the pediatric oncology waiting rooms. It's a scary place, but people open up there. It was life-changing for us. They understand what you're going through more than even close friends or family. And we've made great friends with families through Candlelighters of Brevard, an amazing charity supporting families with kids fighting cancer. Because it’s not just about the patient; it's about the whole family. Whether you’re a child or an adult fighting cancer, you can’t do it alone.
Emma June has also connected with remarkable people through her prosthetic organization. Insurance usually covers only one type of prosthetic for a child, but they need more for various activities. She's part of a foundation that provides athletic prosthetics for kids, so that they can do the things they love. She was so active before all of this, so it was really amazing to have this support.
Our communities in both South Carolina and Florida have been so helpful and supportive for our entire family, too. And our employers were really great about working with our schedules when she was first diagnosed. Pediatric cancer is something that just really resonates with parents who have healthy children. Our story is a reminder that this can happen to anyone, and that health is unfortunately not guaranteed.
I wasn’t big on social media before this. But Facebook has been incredible for sharing her story. We post updates and anyone who wants to can share it. For instance, a friend of mine from Florida has an aunt in Idaho who shared it with all her friends, and the page exploded. It’s been a really great way to not only update people on Emma June’s progress, but also raise awareness of pediatric cancer and its challenges.
“Something about it is very freeing”
Jamie: I never, ever thought that this is where my life would be at this point. But something about it is very freeing. And almost exciting. Because we’re here and we’re doing everything. We’re not waiting around. Emma June went to her first music concert recently. We went swimming with manatees. We’ve done a lot of things recently that other people would say “Oh, we don’t have time for that.” But you have to do those things. You have to make the time. And like Emma June said, the littlest things are what make her the happiest. And it’s really not even “things” that bring her joy…it’s time. It’s sharing moments with other people. People make her happy. So do animals.
Emma June: My advice for others like me? Try to stay positive. Which of course is really hard. You’re in pain and you’re sick. You feel awful. You have every reason to not be positive. It sucks. But I encourage people to find the little things in life that bring you joy. And also remember that it’s okay to lean on other people. You have to. Hang out with your friends and your family. Hang out with your dog. Watch funny movies. Read books. Just find those normal, everyday things that you love…and stay there.
PART II: Jamie Kent (December 14, 2023)
“She fought as hard as she could. We’re trying to figure it all out. It's a process, you know?”
Emma June tried to keep a positive outlook despite feeling so sick. But cancer and treatment are painful and they take their toll.
Here are some photos of our family in Hospice House, as we said our final goodbyes.
Maybe we could have tried another trial. But we learned from a friend of ours who went through something similar. He was 17 when Emma June was diagnosed, and we met through a hospital in Greenville. They both had the same kind of cancer, in the same location around their knee and leg. When he found out there was likely no cure for him - since his cancer had metastasized in his lungs (just like Emma June’s) - he chose to continue treatment. He did radiation and tried all sorts of things. He passed away last March.
When I spoke with his mother, one of the things she said they regret most was that he was sick the whole time, up until the very end. His treatments made him so unwell that he didn’t have the energy to visit friends or do things that he probably wanted to do. So we really took this into consideration.
Eventually, Emma June made her decision. She said, "If I only have a small amount of time left, I don’t want to be sick for it.” So we came up with a list of things she wanted to do. We called it her “Now or Never List.” And thanks to several charities and communities and people who helped us, she did every single thing on her list.
She had a “super summer” of trips and lots of music. We saw Ed Sheeran, Taylor Swift, and Adele. And we had a big family reunion in New Jersey where my parents are from. She also graduated high school. When she started hospice, the doctor said she probably wasn’t going to be around in May, and to do whatever it was she wanted to do. Emma June said, “I want to graduate.” And she did. It was the perfect day. The absolute perfect day.
“How do I want Emma June to be remembered?”
Emma June will be remembered as someone who encouraged and supported other people. Her experience made her wiser than most for her age. Kids are kids…they get hung up on little things pretty easily. But when you learn how precious life is and how quickly it can be snatched from you, you figure out what’s really important…which is rarely “things.” It’s making the most of your time. Living your life to the fullest while you can. Her Daddy, my husband, wrote something the day she passed: “Keep your loved ones close. Make sure that no matter what situation we find ourselves in, no one fights alone."
We were so lucky to have incredible doctors and nurses that were in charge of her care. I didn’t know much about hospice at the beginning. I knew of it, but not how it really worked. When Emma June’s oncologist first mentioned it (this was before we found out the clinical trial results), I said absolutely not. And he understood and said it was of course our decision, but that he knew of many others in similar situations who wished they had started hospice sooner. So I thought, okay, here’s a smart person who has been through a lot of different things as a pediatric oncology doctor. So I listened to what he said, took some time to process it, and then we eventually made the decision to do it.
Dr. Lauren Loftis led Emma June’s hospice team (VITAS Healthcare). During one of her final home visits with us, we were sitting out on our front screened-in porch. She came over to us and asked Emma June if she could speak with her. Emma June said, “Yes, but can we stay out here, please? Instead of going inside?” And Dr. Loftis said “Absolutely. I’ve been in an office all day, I’d love to sit outside.” It was a lot of information for us to take in, but she was so clear in how she communicated, and also so compassionate. I felt like we had so many options, and it was really a team decision on how to best manage her symptoms.
We ended up so lucky to have fantastic hospice doctors and nurses. They became our friends. I actually saw one of Emma June’s nurses, Stephanie, last weekend, and I met her Mom. I told her how much I loved her daughter. Not just as a nurse, but as a person. She’s wonderful. I said I wish we had met another way, but that I feel so lucky to know her.
“You really don’t fully realize how devastating this all is until you experience it.”
Emma June was diagnosed right before she turned 14. That’s a delicate age even without cancer, because kids are still trying to figure out who they are. I remember going out in social settings BC (“Before Cancer” as we call it) and Emma June was a bit shy around people that she didn't know. But that changed when she was diagnosed. She wanted to be a part of all the conversations. This meant talking to a lot of adults, lots of doctors, nurses, therapists etc. And we supported this…we always wanted her to advocate for herself. We’d say to her, you’re old enough to verbalize how you’re feeling and what you’re thinking. And I think that really helped her go outside her comfort zone and grow.
Her nurses always called her “HIPAA June,” because she would always ask, “Who’s that? Who’s here? Why are they here? How long are they going to be here for?” And they’d say, “We can’t tell you that, it’s private!” And then she’d say, “Okay, fine, but I’m going to walk down the hall and find out for myself!” She would just stand in the hallways and peep into all the open doorways. And this was during COVID, so she’d of course have her mask on and would just wave at people from afar. She really found her place in the pediatric hall of the hospital. She spoke so clearly with parents and really held space for the things they were feeling for their little ones, that maybe they felt like they couldn’t actually say to their kids. Emma June was able to explain her experience really well, which I think helped them better understand what their own kids might be going through. She met so many families, many of whom we still stay in touch with, and many of whom have lost their loved ones to cancer. You really don’t fully realize how devastating this all is until you experience it.
“I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.”
My advice for someone who has a sick child? Rely heavily on your doctors and make sure you get second and third opinions. Especially because there aren’t many treatment options right now for pediatric cancer, which is a really difficult thing to grapple with. But it’s important.
Pediatric cancer doesn’t get enough research, because there’s such a small percentage of kids who get this sick. But in this day and age, where we have so much technology and so much information, it just shouldn’t be this way. We need more research and treatment options. Later on, when I feel like I’ve gotten myself together, I plan to really advocate for this. I recognize that in the grand scheme of things, not many kids get this sick. But that doesn’t mean that the ones who do should have to live such a hard life.
And for the treatments that do exist, there are a lot of side-effects. We know someone who was diagnosed with leukemia when she was 14. She did her treatment and is now almost 30. So she’s an adult, she was able to go to nursing school and became a pediatric oncology nurse, which is amazing. But she now has so many other medical conditions and issues that resulted from her treatment. And also, socially, it’s so hard to be “the sick kid.” You miss out on the development that normally happens in your teenage years.
“We’re all trying to find our way”
Emma June’s brothers are doing okay. They talk about her all the time. We're all trying to find our way. Burke is very quiet and introverted. So we are very mindful in how we speak with him to make sure he feels safe and comfortable. And Sam, my youngest…he’s the silly and loud one. He is usually very clear about his feelings. We always say, “Do things that would make Emma June proud!” And we remind them that if she were still here, she’d be giving them advice and keeping them in line!
We had a celebration of life for Emma June, and it was really hard. I remember speaking with my cousin, and she was really having a difficult time. She said, “I am so close to my brothers. I cannot imagine losing a sibling, especially when you're in these formative years.”
Dealing with my own grief is hard. Because I do think of my boys first, because it's so traumatic for them. It’s made them grow up so much faster than they should have to. So much life experience. But I know I need to take time for myself too, to process it all and grieve.
From The Portrait Project
If you would like to make a donation in honor of Emma June, please visit the website of Candlelighters of Brevard, a wonderful charity that supports families impacted by pediatric cancer, including travel expenses, as cancer treatments are not available locally for everyone.
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
