E43: Coming of Age with a Rare Cancer Diagnosis with Presley Jackson

A Cure in Sight is joined by Presley Jackson and his mom, Stephanie to discuss coming of age with a rare cancer diagnosis.

This month is #childhoodcancerawarenessmonth and there are few more brave than kids tackling a cancer diagnosis.

Please consider sharing this episode and or starting a fundraiser for ACIS on your page to help us ensure patients have the resources they need, as well as funds for future research for #ocularmelanoma

All #pediatriccancer is rare. In the #ocularmelanoma world, it’s even more rare to be born with OM or to experience a diagnosis in childhood.

Presley Jackson was diagnosed at 13 years old.

We wanted to share what he wrote in honor of #nationalbraveday and #childhoodcancerawareness

"If I had to recount a time I faced a challenge or setback I would think back to November of 2018 when I started the battle with the biggest challenge I have and probably will ever face.

This challenge would be my battle with the super rare cancer called ocular melanoma. The cancer and the treatment I received to fight this cancer would ultimately destroy the vision in my right eye rendering me practically blind. This would be my first major setback, because it impacted the biggest part of my life, baseball. I have played baseball since I was 5 years old. It is my pride and joy, and really my life. I love baseball. So when I returned to baseball in the spring of 2019 it was not the same as before.

The cancer had ruined both my depth perception and my reaction time. This made playing baseball exceptionally hard and practically banned me from pitching. Slowly but surely, with hours of practice and work I would make my way back to the mound and back to the standard of playing I was at before my diagnosis. I continue to raise my standards still to this day and continue to push my limits and defy the odds. I may not be the best pitcher, but I give it everything I have got.

Other setbacks would come in my everyday life. I have now become very light sensitive and fragile in a way. I get severe ocular migraines that affect the vision in my good eye as well. My cancer and subsequent radiation treatment took everything my body had, so normal illnesses like Covid, the flu and even the common cold are much worse on me. I also have to deal with hundreds of doctors appointments, scans and travel for treatment. This causes me to miss a lot of school and a lot of normal kid life.

Through everything this challenge has thrown at me, I continue to live my life to the fullest and have even learned some very valuable lessons from it. I learned that no one is promised tomorrow, so you have to make every single moment count. I started a project called the Polaroid Project to help me capture these memories. The second lesson I learned is that family is everything. Having the full support of my family has enabled me to fully believe that anything is possible. Which brings me to my final and most important lesson, nothing is truly impossible."

Presley Jackson Ponce September 21st, 2022

Thank you Presley for your bravery and honesty in sharing your story.

ANNOUNCEMENTS:

Eye Believe Survivorship Seminar in Nashville, Tennessee
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
(Virtual and in person options.)

Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma 

NOVEMBER 5, 2022; 8 AM 

Register here and be sure to bring friends and family to walk with us! (Virtual option available)

Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters

 

NOVEMBER 12, 2022

REGISTER here and feel free to bring friends and family along! (virtual options available) 

 

Email contact@acureinsight.org for questions regarding any upcoming events!

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The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors. 

This podcast was hosted by Danet Peterson and produced by Page Fronczek.