Making an Impact Deeply Rooted in Ohio
Written by Erin Santos, Isabella’s Mommy & Executive Director
I saw a funny meme the other day that said that “I have come to realize that absolutely every human on earth is from Ohio”. It’s true. Ohio is the Kevin Bacon of states. No matter where I go, I run into someone from Cleveland or outside of Columbus. Even my son is starting to pick up on the Ohio State gear he sees randomly in Charlotte. It’s everywhere. He has even picked the trick of saying “O-H” and without a doubt, a total stranger will respond with “I-O”! He may even hate Michigan for no other reason than his Grandpa told him to from birth.
After growing up in Ohio for 22 years, I found myself yearning for the day when I would leave my hometown, spread my wings, and seek warmer weather and new adventures. I landed in Charlotte, started a family thinking we would become a “Southern Family”. We would drink sweet tea and eat pimento cheese and spend our summers frequenting Charleston, Savannah, and Hilton Head as we dug our feet into the southern way of life. But then life hit hard, our firstborn Isabella was diagnosed with stage IV neuroblastoma.
Early on in Isabella’s life, she fell in love with Ohio. The possibilities of snow, the grandparents and cousins at holidays all sitting by a fire as we scrambled out quickly before each trip to purchase our first winter coat of the season. When her cancer would find quiet times, we would jump on the opportunity to be a normal family and try to find a vacation to take our minds off our hectic world of pediatric cancer. Okay, kids… where do you want to go? They only had two choices in their mind. Disney World or Columbus. I have to say, more times than not – we found ourselves in Westerville, Ohio. Damn this state.
It wasn’t just Isabella. All my kids love the Buckeye State. Don’t have school on Friday? In the car, we would pile up and 7 hours later we would be driving the pinwheel of streets to my sister’s house off Sunbury Road. Naturally, as the Isabella Santos Foundation started to grow – a partnership with my home state just felt natural. After all, it was not only my home – but my kid’s second home. Not to mention the fact that Nationwide Children’s Hospital has become one of the top 10 hospitals in the nation. I often wonder if Isabella would have been treated there from the beginning if our outcome would have been different. Welcome to the life of a parent who lost their child. Coulda, shoulda, woulda…
We have partnered with Nationwide Children’s in the past. But 2020 brought new kids and a new mission to us that opened our eyes to the partnership even more. We lost a little one, Madison Fedak, almost a year ago because like Isabella, her cancer returned in a fierce way and she ran out of options. We made it our mission to find anywhere in the nation that could move the needle for kids like Madison who suffered from Osteosarcoma and suffered a relapse, even relapsed in the brain. We sent out requests to the top hospitals in the country and waited, hoping someone would provide us with hope. And just like that… Nationwide Children’s answered the call.
It was exactly what we were looking for. A trial that was dedicated to kids with relapsed sarcomas. Kids could enroll as early as Q1 2021 and over 26 hospitals across the country were eligible to enroll patients, including Charlotte. If you had a relapse in the brain, you were still eligible which is the equivalent of prayers being answered for parents of children with relapsed disease. Minimal side effects and a promise of possibly beating cancer that is chasing your child relentlessly or at least the possibility of more time – which is priceless.
Of course, I love that we have the possibility of making this a reality but in my heart, it feels even more special because I will always be from Ohio. No matter how much I try to shake it, my dry sense of humor that lets people know almost immediately where I’m from, the amount of money I spend at Homage sporting my Buckeye spirit, or the fact that my son dreams of attending college at THE Ohio State University – it all pulls me back to this state. And now, in my daughter’s memory, we can send funds to Nationwide in honor of her and all the kids we have lost from Charlotte to Columbus and beyond. I can’t think of a better gift this holiday season.
So, while you might look at the Isabella Santos Foundation as a Charlotte charity, if you really look behind the scenes – you will find we are also making an impact deeply rooted in Ohio. We were born and raised with you and continue to be a part of your community. I have always said that here at ISF we don’t care where the child lives – as long as we are doing our part to save them. But, for me – doing my part in my home state just feels right. Because in a way it was her home state too.
–Erin, Isabella’s Mommy
Madison passed away from Osteosarcoma on December 21, 2019, at only 7 years old. On November 26, 2019, Corey lost his battle to Ewings Sarcoma at 20 years old. On June 23, 2020, Nicholas lost his fight to Osteosarcoma just a week shy of his 18th birthday. Each one of these kids didn’t have enough treatment options to save their lives.
For this Giving Tuesday, we are asking our Ohio supporters to help us fund a revolutionary clinical trial coming out of Nationwide Children’s that will change the way treatment is provided to sarcoma patients. The therapies coming from this trial will have the potential to provide targeted and less toxic therapies with the potential to significantly improve overall survival outcomes for patients with aggressive relapsed disease.
Our goal is to raise $10,000 for Giving Tuesday to help fund groundbreaking pediatric research in Ohio. Be part of more answers for kids fighting sarcomas… want to make a year-round impact, join our monthly giving program. Donate today.