Imagine taking your child to urgent care thinking they have appendicitis and instead being told they have cancer, and not just cancer, but Ewing sarcoma. Ewing sarcoma is a rare type of cancer that occurs in the bones and in the soft tissues around the bones.
This is exactly what happened to Jen and Ella Edwards when Ella was only 9 years old!
Today, Jen and Ella join me to talk about Ella's cancer journey, what they learned about pediatric cancer treatments, the choices parents can and cannot make, and some of the practical tools they put in place to help Ella heal. She is now 15 years old and shares advice for other pediatric cancer patients.
This is an inspiring episode that will surely touch your heart!
Connect with Jen and Ella:
https://www.ellastrong.org/
Suggested Resource Links:
Your donations power our podcast's mission to support cancer patients with hope, insights, and resources. Every contribution fuels our ability to uplift and empower. Join us in making a lasting impact. Donate now! 🌟
Imagine taking your child to urgent care thinking they have appendicitis and instead being told they have cancer, and not just cancer, but Ewing sarcoma. Ewing sarcoma is a rare type of cancer that occurs in the bones and in the soft tissues around the bones.
This is exactly what happened to Jen and Ella Edwards when Ella was only 9 years old!
Today, Jen and Ella join me to talk about Ella's cancer journey, what they learned about pediatric cancer treatments, the choices parents can and cannot make, and some of the practical tools they put in place to help Ella heal. She is now 15 years old and shares advice for other pediatric cancer patients.
This is an inspiring episode that will surely touch your heart!
Connect with Jen and Ella:
https://www.ellastrong.org/
Suggested Resource Links:
Your donations power our podcast's mission to support cancer patients with hope, insights, and resources. Every contribution fuels our ability to uplift and empower. Join us in making a lasting impact. Donate now! 🌟
Hi, I'm Ivelisse Page, and thanks for listening to the Believe Big Podcast, the show where we take a deep dive into your healing with health experts, integrative practitioners, biblical faith leaders, and cancer thrivers from around the globe. Welcome to today's episode on the Believe Big podcast. My name is Ivelisse Page, and it's an honor to spend this time with you. One of my favorite parts of what we do at Believe Big is getting to work with and speak to inspiring individuals who have overcome cancer. Today's episode is special because we have an incredible young lady and a pediatric cancer overcomer, Ella, with her mom, Jen, today sharing their story. Jen is a mom to five kids, a wife, is a certified nutrition and holistic health coach who after her daughter's diagnosis with Ewing's sarcoma at age nine and herself being diagnosed with Lyme's disease wanted to use what she learned to help others heal. They founded the EllaStrong Foundation while Ella was undergoing treatments. It is their mission to bring awareness to pediatric cancer and raise money for much needed research for safer and more effective treatments. In their spare time, Jen enjoys training for triathlons and marathons and Ella is 15 now and enjoys playing lacrosse, is passionate about leadership, and is her class vice president in her school in Annapolis, Maryland. So welcome Jen and Ella to the show.
Ella Edwards:Hi. Yeah. We're just so glad to be here. Thank you all for listening today and hearing our story.
Ivelisse Page:Well, we always like to learn from our guests what their favorite health tip is. Can you each share one with us?
Jen Edwards:I'll go first. My favorite health tip is actually to, it's a little different than most people would probably say. I would say to have a goal. I think it's always important to work towards a goal, and you might have to readjust your goal, but, but constantly setting that for yourself, in different phases of your life really helps. It helps me at least keep going, have a vision for what you're hoping for. So that's mine.
Ella Edwards:My health tip is probably to be staying active. During my treatments, I was always staying active, trying to go for walks, get outside, and that always helped me.
Ivelisse Page:Those are fantastic. I love them both and, Jen, you taught your daughter well to get outside and to stay active. I know how difficult it is to be diagnosed as an adult. I can't imagine how it must have felt to have your child diagnosed or you diagnosed Ella at such a young age. What was the most challenging part for each of you? And Jen, you can go ahead first.
Jen Edwards:For me, I really had a hard time struggling with how she ended up getting cancer. We live very cleanly, we eat really well. I'm really particular, I've always been with chemicals and things like that, we were really conscious of it, so when I actually didn't think kids got cancer, honestly I didn't know that it was something that happened quite frequently, and I thought I did something. And so it was really hard for me. I blamed myself a lot, and just didn't have answers. I still really don't have answers as to why this happens, other than just a compilation of lots of things. But, I'd say that was one of the biggest, challenges for me was to getting over blaming myself for it and navigating a way forward, to healing instead.
Ella Edwards:I would say my biggest challenge It was so long ago, so I'm not really sure of all of the details of everything that went on. But just learning about everyone that was in the hospital and where I was at that point was probably my biggest challenge.
Ivelisse Page:Yes, yeah, trying to understand it all. I, I'm sure it was a lot to, to take in.
Jen Edwards:And they didn't tell her very much in the beginning, which is such a scary thing for a nine year old. We were really careful about how to talk to her about it and to not make it scary. So it was really difficult to explain what was going on to her at that age. So
Ivelisse Page:She was nine at the time. So how did you explain that? Because I'm sure a lot of parents are trying to find the words even for themselves to share with their kids. What would your best advice be?
Jen Edwards:We did make sure we had all the answers before we talked to her. She knew she was sick. Obviously, she's not feeling good anyway. But, and we were already on the oncology floor. So there were kids there without hair. And, she at the time had a grandmother who had cancer. So in that way, we were able to explain. It was something similar to that. And also when we talked to her, there was a young girl there, Claire. They would come every Friday night and serve dinner. It was the Forever Fierce Foundation. And so Claire was a Ewing sarcoma survivor about her age. She had gone through it two years before maybe? So they came every Friday to the oncology floor, arranged for a free dinner at Johns Hopkins. And, they also raise money for research. And so they were the first family we met. Our oncologist, her oncologist kind of arranged it. And, so she was able to talk to her about it too. That same day we were just processing it with her. So super helpful to have other people who've gone through it insert themselves and give us a little bit of hope. Knowing, with the same cancer, same age, yeah, and she's doing awesome too, so it's really inspiring.
Ivelisse Page:That's encouraging for everyone to hear. And can you share a little bit about how you found out Ella had cancer and what you experienced in that process?
Jen Edwards:Gosh, it was such a shock to us. I'm sure as to Ella. She was like a normal, healthy kid. I'm sure everybody, might say that, but never even had strep throat, never went on an antibiotic or an ear infection, nothing. And she had a stomach ache for a week. And, my other kids had the stomach bug too. They had a stomach flu. So it was that kind of, I don't know, it was like when winter was turning into spring and kids just were sick. And she didn't feel well. But at some point, her stomach, it was just hurting so badly and it became distended and we knew something was really not right. I honestly thought she had appendicitis. So we took her to the urgent care, not really expecting much. And he, thankfully, was wonderful and sent us directly over to the ER. He knew something was up. We went to the local hospital. And, they immediately did an ultrasound and found a mass that was blocking her bladder. So we were able to figure out right away, but it all, this all happened within two hours. So it was really, fast. And we had a wonderful doctor there who immediately sent us Dr. Callender, who's amazing in pediatrics and he sent us to Hopkins within hours. and we were on the oncology floor. It was like this whole thing within a 10 hour period. They're putting a port in the next day, talking about chemotherapy. And it was just really fast for us. We went from like normal life to living on the oncology floor for the next year.
Ivelisse Page:How did that make you feel Ella? Do you remember that? I know you were several years ago, but do you remember how that time when things changed, how that made you feel?
Ella Edwards:I don't remember everything in specific, but I know that was a time of stress for me and my family, and I remember being really nervous going into the doctor's offices, switching around, not really knowing anything about what they were telling me. It was just really stressful, and... scary, and we didn't know what was going to happen.
Jen Edwards:There were a lot of needles she did not like. I mean, it's like accessing the ports and blood draws every time you get a fever, they take it from your arm. And it was, for that age, it was so hard. It just hurts, and they are scared, and.
Ivelisse Page:So what were some of the tools that you used, and the doctors used to help Ella overcome Ewing's sarcoma? Did you incorporate integrative treatments into her care?
Jen Edwards:We did. I wish that there was what they offer now. At least I didn't know about it then. So now there's this whole world of amazing integrative oncologists and coaches. And you've had people on here, nutrition. It's so inspiring to me. I told them, I wish I had them when she was sick cause we would have done that. But, we used a naturopath doctor who was actually out in California. So we did a zoom call with her several times and she did some homeopathic stuff with us, which was a lifesaver to help reduce the side effects of chemo and it was amazing for us. And we had a massage therapist come to the house once a week volunteer, right?
Ella Edwards:Yeah, we did acupuncture in Annapolis and we also went to the chiropractor
Jen Edwards:Every week and did some cranial work when she had a lot of headaches in the beginning and it was really I think all of it really made a difference for her.
Ella Edwards:Yeah.
Jen Edwards:She didn't have the side effects other kids did. And she always seemed to be the healthiest kid on the floor, honestly.
Ella Edwards:We did a lot of nutrition stuff too.
Jen Edwards:Yeah.
Ella Edwards:Healthy food.
Jen Edwards:That was a battle.
Ivelisse Page:So how did you incorporate that into educating Ella and having her get on board with pursuing healthier, practices with eating?
Jen Edwards:We did a lot of shakes, right?
Ella Edwards:Yeah.
Jen Edwards:I managed to do it with the shakes because.
Ella Edwards:We did a lot of shakes and we had been going to the chiropractor since I was little, so I already knew about that.
Jen Edwards:Yeah. So we had always done that. We started acupuncture was relatively new, but, but wonderful acupuncturists, that was really good with her. And, so the other stuff we had done before she was used to me, my crazy, vitamins and all that stuff, but eating well was, it was a challenge because in the hospital, especially in pediatrics, they'll tell you calories, calorie, and if they need to eat 10 doughnuts, then feed them 10 doughnuts.
Ivelisse Page:It's crazy.
Jen Edwards:It is, it's crazy.
Ivelisse Page:Like even in today's world where we know food is medicine. And, I remember having a conversation with an oncologist friend and, there's Ivelisse, we're not trained in that in medical school. So we're just trying to do all that we can. So our patients don't lose the weight so that they can handle treatment. And then I asked this question of him. I said, If your daughter was home sick in bed with the flu, would you be telling her to eat 10 doughnuts or, or would you be telling her that she needed chicken noodle soup and orange juice and things that would help to support her? And he smiled and, and agreed. And so I think we need to do a better job of continuing to educate doctors, even in the medical school level, so that they can be able to be more help to patients, like Ella going through something difficult.
Jen Edwards:And I think that with kids especially, you want to just give them treats, you know, it's a natural instinct to give, they had donuts on the floor every day and cakes and just you want kids to feel happy there and they do such a nice job of making kids feel good, but it's through food that's junk. And so that was, that was hard because you just can't really avoid that. And I didn't know back then about like ketogenic diets and stuff like that. I just didn't have those tools. I probably would have done it differently now, but, but we did what we could.
Ivelisse Page:So what would you have done differently if you, what do you wish you knew then that you know now, especially with all your oncology training you've done.
Jen Edwards:I really definitely would have put her on a keto diet. I just, the research for even children that is so amazing to me for cancer. It's just stunning. might have been a little difficult with her at her age, but there's resources now for kids, and helping them kind of transition to a keto diet but, absolutely, 100% would have done that. I think that's the one thing. Otherwise, we might have just done the same stuff because we did all the things we could.
Ivelisse Page:That's true.
Jen Edwards:Yeah.
Ella Edwards:We would have had some luck getting me to be on a keto diet.
Jen Edwards:It would have been a challenge. I would have had to hire someone else to work with us.
Ivelisse Page:Interestingly enough for pediatric cancers now they can put in a G tube, so it's not like they're having to eat it all themselves and they have this liquid organic nutrient dense meals that can automatically be fed in without having to eat all of it.
Jen Edwards:I've heard that. Although I think it's difficult at some hospitals don't allow it. So it's only certain ones. Which is so amazing to me that they do that. That's really great. Yeah.
Ivelisse Page:What did you practically do to overcome those times of discouragement and fear?
Ella Edwards:Um, we had a child life specialist on the floor. She was really helpful. She was kept us busy. We had stuff to do games, plenty of visitors. We had a pastor come in, a priest, they would come in and pray with us. Our church and our community was always really involved and keeping us busy, bringing us meals, pretty much doing anything that I would need in the hospital. So that pretty much got us through.
Jen Edwards:Yeah, we had your Uncle Paul had the local lacrosse, the Bayhawks, they used to do the pro team here. They came and they came to our house a couple times, playing cards with her. The Baltimore Oriole came. So it's amazing. People are just so kind and like the visitors were key and the prayers. for me, I don't know about for you, but the prayers for me were everything. I would specifically find a couple friends and ask them to pray for specific things. If she had a fever that day, I would ask them, I would text them and ask them to please pray that her fever comes down. So that helped me, like the specific prayers, knowing there were people that were covering us with that was everything to me.
Ivelisse Page:So what would your best advice to parents who want to approach their child's care in an integrative way and their oncologist is not very supportive?
Jen Edwards:So that seems to be the norm, honestly, which is unfortunate because you want to involve your oncologist. And what I did was when we worked with a naturopath, she had Ella do certain homeopathic drops and we did all this stuff and I would just tell our oncologist what we were doing. I sent an email and listed out the stuff we were having her on. And, they said, fine. I don't think they knew what it was. So they ran it by the pharmacist and everybody was fine with it. So really, I guess my best advice would be just to be as open as possible. And I asked a lot of questions. to my oncologist and questioned everything. For me, that was really important because it actually led us to a different kind of treatment than we would have done. The questions were super important and not just taking everything based on what they say, but doing my own research. But as far as the other integrative stuff, we just, we just did it. We did it all on our own and I didn't really discuss acupuncture or things like that with them. So we didn't get a whole lot, a lot of support with that. We just worked with our own, we formed our own team. Ella actually wrote this little book. Do you remember your book?
Ella Edwards:Yeah.
Jen Edwards:She wrote this book, like it was a children's book and it had Ella's, what'd you call it? Ella's Angel. It was like she drew pictures of her team and it wasn't just the oncologist and her head nurse. It was like her chiropractor and her acupuncturist and Tish, the massage therapist and our physical therapist and Dr. Amy. And I think that's the key is to have a team of people, supporting you. Even if they're not all working together, they're working with you and trying to keep everybody in the loop as much as possible.
Ivelisse Page:You ultimately being her biggest advocate as her mom and just saying, I know this is what she needs and putting that team together is important. And like you said, everyone has their own gifting and ability and, so you talked about being your own advocate and then doing your own research and putting a team of community together, which you did. So that's incredible. Yeah.
Jen Edwards:Yeah, it was not an easy battle though. I did feel like I had to armor up every day and go in with my sword and my shield and, it, it shouldn't have to be that way, but I think you have really have to keep yourself, on the edge always of knowing what's happening and questioning.
Ivelisse Page:Yeah. Questioning, and then also listening to your gut. Like for me, the gut is the Holy Spirit. But for many people, it's like that still small voice inside that's telling you yes to this and no to that. And sometimes we try and shut that off when in fact, we as moms or we as individuals know what's best for our daughters or for ourselves. And it's so important to, to listen to that and not just fall to whatever's being told to you. Be the CEO of your own health. And yes, we need to listen to the wisdom of our doctors, but we also need to do what's best for us as we know ourselves best.
Jen Edwards:Yeah. I think the whole system is very disempowering to patients and their families, and like you said, even seeking a second opinion about something, which we did at some point in her treatment, and it helped so much. It was really empowering knowing that we had choices, even though with children, you don't have as many choices as you would as an adult. But, we did, we were able to get some different opinions and change the course of action with some of her treatment. It was really great, very empowering to do that.
Ivelisse Page:Can you share with how pediatric cancer is different than adult cancer in the sense of making decisions, what you're able to do and not do?
Jen Edwards:There is a standard protocol typically with most cancers, unless it's a very rare cancer. And, you as a parent really aren't given a choice to have your child proceed with that or not. That's when they can call the child protective services and you could have your children taken away. It happens. And also it's your child and you actually want, you want to do everything possible for them to get well. It would be different if it were my own body, but, I think I might be willing to take more risks. But as far as the standard of care for kids, there's a protocol and you have to do it. And we had some different options. That's why we sought for, other very reputable hospitals to get different opinions on things. And that's fine. But, but yeah, you really don't get to opt out of chemo when it's, when it's the standard of care for that kind of thing. For Ewing's, it was 14 rounds of chemo, and that's it. It doesn't matter if the cancer goes away after the second round, which I asked, of course, like, why? But, but no, the research shows 14 rounds is what's best. So that's what you do.
Ivelisse Page:That must have been hard as a parent.
Jen Edwards:It's really hard. Yeah, it was very difficult to surrender that.
Ivelisse Page:Ella, what advice would you give to other children or teenagers who are going through cancer right now?
Ella Edwards:I would give the advice of just keep pushing through and when I had cancer, I really just used my faith in God and trust in my community that they would always be there for me and help me with anything I needed. If that was my family, my friends, our cousins, that's, that would be my main advice. And just to trust the people you're with. We also did lots of fundraising for childhood cancer research while I was in treatment, and we still are now through our EllaStrong Foundation through toy drives, lemonade stands, holiday time fundraisers. We've done band aid drives. Just anything we can do to help other kids who are in that situation currently.
Jen Edwards:I think that helping other people helps you get through the pain too. So that's what we found.
Ivelisse Page:Yes. That's incredible. Can you share a little bit about EllaStrong a little more? I know you do fundraising for research, but what other things do you guys do at EllaStrong and how can it help others?
Ella Edwards:So during the holiday times like in December, we have a toy drive every year for the past five years. Yeah. Yeah. Five years. And we've donated what we've collected and then donated over 1, 500 toys that we have a link on Amazon for and we'll bring them into the pediatric floors and mostly oncology floor, but for Anne Arundel Community Center Hospital, we just bring them into all the pediatrics there. So they have a Johns Hopkins. And Children's. We donate some to the Ronald McDonald House, and we'll just give them to the kids there that are there on holidays.
Jen Edwards:And she delivers them herself, which is the best part. It's so cool.
Ivelisse Page:You're paying it forward to what that other girl had done for you, bringing the meals in on those Fridays, you're bringing in toys and giving someone else hope, in that midst of that. And I know that I'm sure it means just as much to them as it did to you back then.
Ella Edwards:Yeah, that really meant a lot to me. That gave me a lot of hope going forward in my journey. So that's really what we want to do for other kids with the EllaStrong Foundation.
Ivelisse Page:I love that. Yeah, I was reading on your website that so you're not only helping for research for safer and more effective treatments, but you're also supporting integrative wellness for pediatric cancer patients, and then to also raise awareness. So you guys are doing an amazing job. And I'm so grateful that I had the opportunity to talk with you both today. And Ella, what's next for you?
Ella Edwards:I have a lot going on in school right now. I'm a freshman at St. Mary's in Annapolis. We're really hoping to keep going with EllaStrong and even be supporting people in other states that are going through chemotherapy, going through having cancer. We really just want to expand EllaStrong and keep building off what we've already built in the last five years.
Ivelisse Page:Well, we wish you the best. We're here to support you as well. It was so nice to speak to you both today and thank you for all that you guys are doing for pediatric cancer.
Jen Edwards:Thank you. You guys are such a great resource. Honestly, I wish I knew about you when she was sick. But it's so helpful to have this information out there to people. I can't express it enough. So thank you.
Ella Edwards:Yeah. Thank you so much for having us on here.
Jen Edwards:Yeah. We appreciate it.
Ella Edwards:Talk to everyone.
Ivelisse Page:If you enjoyed this episode and you'd like to help support our podcast, please subscribe and share it with others. Be sure to visit BelieveBig.org to access the show notes and discover our bonus content. Thanks again and keep Believing Big!