Smarties, it’s my honor to introduce you to Smarty Warrior, Erin Santos, Founder of the Isabella Santos Foundation in memory of her baby girl Isabella who is now in heaven. I just cannot imagine the level of pain Erin has endured over the years. My hope is that by sharing her story with you, together, we may all make a difference in fighting the pediatric cancer battle that is undeniably underfunded and often too little too late. Erin is a true warrior in my book. I’ve followed her Caring Bridge site for almost a year now and so wished I could have done something to change her outcome. She has strength and courage that I only hope to have if I ever walk in her shoes, which I pray each and every day that I never do. But as you know, cancer does not discriminate – it knows no bounds and can come into your life overnight.
So we ask you to share in Erin’s story this beautiful Saturday morning, halfway through Pediatric Cancer Awareness month. Make sure you visit the Isabella Santos Foundation site to learn more about how you can help.
Smarties, meet Erin Santos.
We’re into the middle of September already. Childhood Cancer Awareness Month is once again blowing by too quickly and not getting the attention it deserves. Nestled between the DNC and Breast Cancer Awareness month, all I see is a swarm of American flags and pink ribbons. As the mother of a child who recently passed away from childhood cancer, I feel myself screaming out to an empty room. My daughter, Isabella, passed away on June 28th at the age of seven, after battling cancer for almost five years. Every day is childhood cancer awareness day for me. Every day I stumble around my house, tripping over her shoes, notebooks containing her handwriting, a dress she wore, a song she loved. I can’t put it away for 11 months of the year.
When we discovered our daughter had cancer, we created a foundation in her name to create awareness around her rare disease and help fund a cure. Each year we host a 5K in Ballantyne, and our little event does better and better. I always thought that the event’s success was a tribute to how much everyone loved Isabella. She was magical and electric. She would hug strangers and cuddle up in your lap like she knew you for years. She was always dressed in all things girly and would dance and sing her favorite Taylor Swift songs as if no one was even watching. But this year, the event will take place without her and her signature red hair, or at times.. bald head. I was afraid to put on the event after her passing, but decided to continue in her honor to help other children.
As the weeks after her death continued, I found myself hiding out. When you’ve gone through this, even the best people say the worst things to you. I realize now that most people just don’t know what to say, so their mouths spout out the worst kind of diarrhea statements you could imagine. I wonder if they walk away and then say, “Did I really just say that to her?” Do they know that the things they say to me keep me up at night? Just over a month ago, I was heading to the gym for a needed mental and physical release. It was only a month after her passing so I knew this was a high-risk visit. Another friend stopped me to offer her condolences. We shared some tears and stories, and then she told me something that has haunted me. She told me that this year’s event would be so successful because of Isabella’s passing. But that next year would be the REAL test because we have lost our “product.” People don’t support something without a good product, she went on to say. I felt my mouth hit the floor. My daughter—a product? And people only support her because she is a “good” product? Oh, and people will no longer support her when she is gone. These questions have burned a hole in my brain since we spoke.
I started to wonder…Is cancer funding successful because of what people see? Is breast cancer funding so successful because of the amazing marketing and PR team behind it? All of the marketing brochures with smiling sisterhood pictures of women, hugging in their hot pink bedazzled shirts. Does Stand up to Cancer have it right by having Justin Timberlake and Robert Pattinson talking about cancer and answering your phone calls? Were we only successful as we were because Isabella was a good marketing product?
After 5 years of hospitals and being around hundreds and hundreds of sick kids, I’ve spent a lot of time thinking about the wide variety of kids I’ve seen afflicted with cancer. True, there are cute little girls walking around with bald heads, holding their American Girl dolls and smiling from ear to ear. They would be the “good products,” I assume. But what about all those kids who were just deathly ill and rightfully unpleasant? Shy kids, obnoxious kids, rowdy kids…Little boys who don’t want to cuddle in your lap, but instead bury their heads in their DS or iPad. They are rambunctious as they jump off walls and tables, playing Star Wars. Why is it harder for us to support these kinds of kids? Honestly, the majority of kids with cancer aren’t necessarily cute or sweet or “marketable.” They are not the kids you see on brochures asking for research dollars.
It’s horribly sad to me that as a society, children’s cancer is about the cute kid…or, as I’m told, at least a living one. Why do we need a picture of a little girl in a pink tutu with a big flower headband over her scarred head to motivate us? These shy kids, obnoxious kids, rambunctious kids are just as valuable. They, too, are somebody’s child, brother, sister, grandchild and friend. The real things that we should be seeing are the images of all of these children in the last week of their lives. The pictures of how we, as parents, have not failed them, but how science did. Pictures of how their once full-of-life faces disappear. They pull back from their loved ones; they stop responding to your touch and your kisses. You watch a child who should be running outside and playing, slip farther and farther away from you. They don’t show you their little hands that you once took for manicures, slowly turning grey. Those marketing brochures don’t show the moment when these children’s once beautiful blue eyes stop blinking and glass over. You don’t see a little 5-year-old boy coming in and kissing his big sister goodbye for the final time.
That is the reality of childhood cancer, but that is not a good product. If everyone had to see what I witnessed this summer, there would be no more pediatric cancer. Money would pour in to solve this problem. But you will never see those images that haunt me. The will never be on a marketing brochure, asking for your donation. Those images don’t make you feel warm and fuzzy inside and, I do not know why, but they don’t motivate you donate to find a cure. But we don’t have a cure today. So maybe warm and fuzzy isn’t working either.
Join us for the 5th annual, 5k for Kids Cancer on September 22nd at 8am in the Ballantyne Corporate Park. To register, go to www.5kforkidscancer.com or www.isabellasantosfoundation.com for more information.
Here is Erin on the Charlotte Today Show promoting the 5K.