I was at the beach in 2013 – one year after I watched her pass away in my bed. She was 7 years old, her skin had turned gray, she was all bones and she died from neuroblastoma. It was a hard place to go because some of Isabella’s last days were spent there. It was my first full summer at the beach house without her, I had stepped back in to run the Foundation, and it was hard. I was bleeding out in my grief and all the “likes” on Facebook or people that stopped me in Target to tell me how strong I was, or how much they admired what we were doing in Isabella’s honor were at an all-time high. But what drove me crazy was all these “likes” and comments that didn’t lead to someone actually donating. Isabella’s story made them aware of what childhood cancer was, but so few were doing something about it. It drove me crazy. I couldn’t understand how their empathy for my situation didn’t prompt them to take action. They felt sorry for me, for her and my family and that is where it ended. I would sit alone and my mind would wander and I would think – did she die because there was not enough action? And I kept coming back to the same answer… maybe. That’s when I wrote “Awareness, what a bullshit word”… one of my favorite blogs.
In this blog I told you all to stop just liking our posts and actually start doing something about it. It seemed to work. I watched the Foundation grow after her passing because people were impacted by her life and they were doing something about it. We were making changes. We were bringing pediatric cancer trials to kids and we built a state of the art treatment room – I was watching the Foundation peak. But then something happened. Everything just plateaued and I couldn’t figure out why. I have honestly spent this entire year wondering where everyone went. Did everyone assume we were doing so great that we didn’t need their help anymore? I can’t go anywhere without someone stopping me and telling me how amazing it is to watch what this foundation is doing. But then I walk away and think… she hasn’t donated to us in over 5 years. Why is that?
The reason is simple. We have stopped making you aware. Yes. We are making you “aware” of all we are doing. The MIBG room opened, we collected x number of units of blood, we supported the Ronald McDonald House last week. These are all great things that we are proud of. But what we have stopped doing was making you REALLY aware of what is happening here in your backyard. Sharing what these kids fighting cancer really have to go through. The emotions, heartbreak
Then as we were looking ahead to September, Rachel our Marketing Director told me about how these rare cancer families were all agreeing to allow her into the darkest parts of their lives. The good, the bad and the ugly. She sat in their clinic visits, she got to know these kids, their families, the diseases. I would listen to her tell me how eager these people were to involve us in what was going on with them because people had to know. I sat quietly as she told me little by little.
And then it happened. She came by my house after a day at the hospital and showed me the footage. I pause as I write this and find myself putting my head in my hands. She showed me a video and it has haunted me since. The little girl being held down by her parents as the staff tried to access a line that just didn’t want to work. Cancer mom and dads know this scene all too well. The little girl is screaming, begging her parents to stop. The parents are trying to comfort her because they know the line needs accessed, but I feel their pain. It’s the feeling that haunts me to this day… that I allowed them to torture her. The staff is trying all they can do to make it easier, but it’s just awful. I watched 20 seconds of this video and had to look away because it took me right back to sitting in that very same room with Isabella. It felt so real. I just sat and sobbed. I tried to control myself and get back to our discussion, but I couldn’t control myself – I kept breaking down. Even though that scene is no longer one I’m in… it’s still happening. And I stopped being aware of it.
The kids that we are profiling this month will stop you in your tracks. Young kids, teenagers, young adults, kids with TERMINAL cancers. The folder that Rachel set up for me to look through is beyond hard. I sit and go through it, and then after 5 minutes I have to walk away. It makes it seem like what I went through was a dream so far away. These kids are fighting TODAY and their stories will once again make you aware of what is happening right here in Charlotte.
I needed to see these stories. Because to be honest, I was burning out of this job. It’s a hard job to constantly ask people to come to your events, to look out into an audience and no longer see the people that were once there, to ask people to donate – especially when they have never met the child that needs it. We have a hard job. But it shouldn’t be this hard. This should be the easiest job I have ever had. So why has it become so difficult? I’ll tell you why… it’s because we stopped making you aware. And stopped demanding you take action.
So now it’s September. Read these stories. Get to know these kids. Be grateful that it’s not you in that room, holding your child down who is begging you not to, but you have to because you have to save them. Be thankful for what you have and do something to help those that have been dealt this hand. Because I have been there – and sometimes your child’s life hangs in the balance of whether or not someone out there is going to do something for your child.
Awareness is no longer a bullshit word. I’m all about this word right now. We are going to make you aware. We will be sharing stories and perspectives through their eyes. You won’t be able to look away – because you shouldn’t.
Stop thinking someone else is taking care of this situation. Become aware, read the stories, get to know these kids and take action. Period.
-Erin, Isabella’s Mommy
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
WAYS TO TAKE ACTION:
DONATE: Your gift has the power to create solutions.
FUNDRAISE: Join us as an Awareness Ambassador. Kids fighting cancer need you to be their advocate and their feet-on-the-street. Sharing their stories. Starting conversations. Fundraising for them to bring change to rare childhood cancers.