ewing sarcoma

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:

• EllaStrong Foundation - website
• EllaStrong Foundation - Instagram page
• EllaStrong Foundation - FaceBook page: Team Ella Edwards
• Forever Fierce Foundation - Facebook page

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! 🌟

Episode Summary:

In this episode, we meet Dom Raban, a designer, software developer, and father of Issy.  Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called  Xploro. This amazing app was designed to improve the health literacy of children, to decrease procedural anxiety, and  to improve the hospital experience for all children and their families.

For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/5evWmZZ4BS8

From This Episode:

• About Ewing Sarcoma
• Study showing Xploro reduces anxiety about hospital procedures: https://www.healthtechdigital.com/new-study-shows-xploro-app-reduces-procedural-anxiety-in-children/

Find and Follow Dom:

• Dom's LinkedIn profile: https://linkedin.com/in/domraban
• Xploro: https://xploro.health/
• Email Dom: dom@xploro.health
• Dom's Twitter: @DomRaban
• Dom's Company's Twitter: @CorporationPop

Find and Follow Carole and Wisdom Shared:

• https://www.caroleblueweiss.com/
• Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
• Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
• Follow me on Instagram: https://www.instagram.com/carole_blueweiss/

Find and Follow Carole and Wisdom Shared:

• https://www.caroleblueweiss.com/
• Subscribe to my YouTube channel
• Follow me and send me a message on Facebook
• Follow me and send me a message on LinkedIn
• Follow me on Instagram
• Follow me on TikTok
• Follow me on Threads

The Wisdom Shared Team

• Audio Engineering by Steve Heatherington of Good Podcasting Works
• Production Assistant and Marketing Coordinator: Kayla Nelson
• Production Assistant: Becki Leigh

Today's episode features a conversation with Brandi Benson, U.S. Army veteran and author of the book "The Enemy Within: A Young Soldier's Unexpected Battle with Cancer." Brandi, a writer, speaker, entrepreneur, cancer survivor, and outspoken mental health advocate, was only twenty-four and a few months into her first deployment when she was diagnosed with Ewing sarcoma, a rare form of cancer, possibly due to toxic exposure while she was deployed. Dr. Ron Hirschberg speaks with Brandi about her beginnings in the military and being forced to return home from war only to have to continue fighting, this time the "enemy within," cancer. Today, Brandi is an inspiring and outspoken cancer survivor and tireless advocate of mental health and wellness. 

For information on Brandi, please visit www.brandilbenson.com. You can purchase her book here. 

The HunterSeven Foundation's mission is to research military exposures and their impact on the health of the veteran population, with the intention of sharing the data with the veteran and healthcare communities through education to increase awareness of exposures and the impact on veteran health. For more information on the HunterSeven Foundation and their work, please visit their website www.hunterseven.org.

###

If you are your loved one is experiencing any emotional, mental health struggles, you are not alone and please contact Home Base at (617) 724-5202, or visit www.homebase.org  

Theme music for Home Base Nation: "Rolling the tree" by The Butler Frogs

Additional music in today's episode composed by Lucy Little. 

Follow Home Base on Twitter, Facebook, Instagram, LinkedIn

The Home Base Nation Team is Steve Monaco, Maureen Roderick, Laurie Gallagher, Karianne Kraus, Lucy Little, Taylor Orlando, with COO Michael Allard, Brigadier General Jack Hammond, and Peter Smyth

Producer and Host: Dr. Ron Hirschberg
Producer, Sound, Editor: Lucy Little
Chairman, Home Base Media Lab: Peter Smyth

Home Base Nation is the official podcast of Home Base Program for Veterans and Military Families, a partnership of the Massachusetts General Hospital and the Red Sox Foundation. To learn more and connect with us at Home Base Nation: www.homebase.org/homebasenation. To Donate to Home Base where every dollar goes to the care of veterans and military families that is cost to them, go to: www.homebase.org/donate.

The views expressed by guests to the Home Base Nation podcast are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by guests are those of the guests and do not necessarily reflect the view of the Massachusetts General Hospital, Home Base, the Red Sox Foundation or any of its officials.

This episode covers sarcoma.

Written notes can be found at https://zerotofinals.com/surgery/orthopaedics/sarcoma/ or in the orthopaedic section of the Zero to Finals surgery book.

The audio in the episode was expertly edited by Harry Watchman.

Comprehensive, relevant and insightful conversations about health and medicine happen here… on MedStar Health DocTalk.

 … real conversations with physician experts from around the largest healthcare system in the Maryland-DC region.

It takes as much as 1200 to 1800 pounds of pressure to break the human thigh bone. But an unexpected snap of that bone could be the first sign of the one cancer we don’t talk enough about: sarcomas, or - bone cancer.  Dr. Albert Aboulafia, head of the Division of Orthopedic Oncology for MedStar Health in Baltimore AND medical director of the Weinberg Cancer Institute at MedStar Franklin Square Medical Center, shares information on bone tumors known as Osteosarcoma. 

For more episodes of MedStar Health DocTalk, go to medstarhealth.org/doctalk.

Gaz shared how he’s dealing with a terminal diagnosis as a young adult and why for a practical person like him, living from scan to scan takes on a different meaning.

You can connect with Gaz on Instagram @Gaz_Emmerson where you will see that he’s still biking to his chemo appointments and enjoy concerts with his friends. You will also find the link to his fundraiser for Sarcoma UK there, which now stands at a whopping $111K pounds!

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

++++++++++++

My reflections on the conversation:

I really appreciate having the opportunity to talk to Gaz about his cancer experience, because it’s a bit like an anti-thesis to this podcast, where I promote talking about and processing the challenging emotions we have as a way for us to move forward. Gaz showed me that that’s not necessarily the right answer for everyone and that for him, taking action - like being present and making memories with loved ones and finding ways to give back to others - has been a better way for him moved forward through each setback. I thank him for that gentle reminder. 

Also, it was upsetting to hear that the first-line treatment for Ewing Sarcoma has not progressed in 40 years and thus leaving people living with this cancer with very few treatment options. It brought back memories of the awful countdown I used to do in my head - each time a type of therapy failed for my dad, I would panic silently in my own head about having only x number of options left. At the time, I never thought about what a luxury it was that we even had that many options to try. But again, cancer and luxury aren’t two concepts that often go together. 

After her doctors removed Abri's tibia during her tumor resection, they replaced it with an adult cadaver's arm bone, or what she called her arg (arm-leg). Throughout this week's episode, you'll hear how 12-year-old Abri Bentley, and her mom Nikkole, repeatedly used humor to make light of their fight with Ewing Sarcoma.

Discussion of phase I novel targeted therapy for sarcoma.

Continue this conversation on social!
Follow us today at...
https://twitter.com/thelancet & https://Twitter.com/TheLancetOncol
https://instagram.com/thelancetgroup
https://facebook.com/thelancetmedicaljournal
https://linkedIn.com/company/the-lancet
https://youtube.com/thelancettv