Childhood cancer changes your perspective on everything…

On June 24, 2012, Stuart Santos received a beautiful birthday gift from his daughter, Isabella. She bought him an entry into the ING New York City marathon to run for Fred’s Team, a fundraising program that brings much-needed money to Memorial Sloan-Kettering Cancer Center, where they do groundbreaking research in an attempt to find cures for neuroblastoma, a deadly childhood cancer. Isabella spent many, many days (weeks, months…) at MSKCC fighting stage IV neuroblastoma. She endured endless rounds of chemotherapy, stem-cell transplants, bone marrow aspirations, MRIs, CT scans, and extremely painful 3f8 antibody treatments. She fought hard. For five years. So needless to say, this was a very special and meaningful gift from Ib to her daddy.

When she gave Stuart this incredible gift, Isabella could barely sit up…the disease was finally beating her after five years of fighting it with everything she had. But somehow, despite having virtually no energy, Isabella found the strength to come downstairs, sing “happy birthday” to her daddy and give him this amazing gift. She loved him that much.

Four days later, Isabella passed away.

She was 7.

Knowing that, it’s clear how much running in this marathon means to Stuart, who has spent months training for this run. Dozens of us who graduated from high school with him were planning to cheer him on this weekend, with many people actually planning to meet him at the finish line. Wherever we live, we’d all be sporting our Isabella Santos Foundation t-shirts, promoting the race on the front and a Dr. Seuss quote on the back that reads, “Don’t cry because it’s over. Smile because it happened.”

Here, “it” refers to the short but incredibly inspiring life of Isabella Santos. Whose last-ever gift to her daddy was an entry into the ING marathon in NYC.

When Hurricane Sandy hit, Stuart, like everyone, was assuming the marathon would be cancelled. But it wasn’t. So he and his family made the highly emotional trip from Charlotte, NC to NYC. Stu posted on Facebook that he and his family were there in NYC safe and sound. He was nervous, but excited about the race. He knew that Ib would be there in spirit, running alongside him, cheering him on from heaven. He was ready to run for her.

And then the race was canceled.

Now most of us know that canceling the marathon in light of the devastation in New York and New Jersey is absolutely the right thing to do. Yes, the marathon would bring much-needed money to NYC. But for the people in places like Staten Island, for example, with no power, houses filled with water and raw sewage, and little if any assistance to the people left devastated there, watching runners go by them would be a huge slap in the face.

So yes, we know that canceling the marathon was absolutely the right thing to do. Yet those of us who know Stuart and who knew Isabella still have very heavy hearts over that decision. Because we know that Ib’s last gift to Stuart has been canceled. Childhood cancer stole Isabella. And now Hurricane Sandy has stolen her last gift to her dad.

And that’s simply heartbreaking.

People on Facebook, Twitter and on news-oriented websites are talking about how great it is that the run has been canceled. Many are calling the runners who had planned to run selfish, asking how in the world they could have even THOUGHT about running in light of such physical destruction. But they don’t know Stuart. And they didn’t know Isabella. They don’t know childhood cancer and how much this race meant to them. If they did, they would know what true devastation looks like. It’s intangible, but it’s clearly visible. It’s written all over Stuart Santos’ face. It’s in the eyes of his wife Erin, who, after fighting tooth-and-nail to keep her daughter alive, has somehow had to find a way to live life without her. It’s in the hearts of her younger brother and sister, who will have to grow up without their brave big sister. By definition, childhood cancer is devastation. And when it takes the life of a beautiful child like Isabella Santos, the devastation is immeasurable and unending.

I hope that at least one person who has assumed that all of the NYC marathon runners are selfish for wanting to run tomorrow will read this blog entry. Maybe that person will begin to understand how important this run was for Stuart Santos. And WHY it was so important to him. And maybe then, the depth of devastation that childhood cancer brings will come to light. Childhood cancer doesn’t get camera crews or news coverage. No one talks about it. People aren’t aware of its path. It’s not as widespread as the destruction of Sandy.

But the devastation runs so much deeper than any natural disaster. And it lasts forever.

And once you’ve witnessed it, it changes your perspective on everything.

One way or another, I’m certain that Stuart will run the NYC marathon for Isabella. It won’t be this year, but he’ll do it. I wouldn’t be surprised if Stuart ended up using his time in NYC today to try and help those in need. That’s just how he is. He has a huge heart. Just like his beautiful daughter Isabella did.

Tomorrow, I will still wear my NYC marathon Isabella Santos Foundation t-shirt even though the race is canceled. Because childhood cancer has given Stuart a race to run that goes far beyond the streets of New York City. And I want to support him however I can.

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4 Responses to Childhood cancer changes your perspective on everything…

  1. Darlene says:

    What a beautiful article! It breaks my heart that Stuart can not run this race. Your article was very touching and so true.

  2. Terri Wilson says:

    I remember how Isabella would come to Fun and Fitness class and run laps with the other children even though she was tired and weak. Her determination came from inside but also from her strong family! It’s too bad that the NYC marathon was cancelled but Stuart will be ready for the next one and Isabella will be right there with him!

  3. Sivonne Stone says:

    I actually DON’T think the marathon should have been canceled….It would not be a slap in the face to anyone…It would show that despite ANY devastation, people pull through and FIGHT!

  4. Heather says:

    Thank you so much for this entry and for writing this blog. I hope many more will see this.

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