Why I Run

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Day 14 QuoteDay 14
Why I Run…

Last month my marathon coach asked me why I’m running with the ISF Dream Team. I wanted to answer something easy like, “to stay in shape”, or “for the company during a run” or “all my friends are running”. But of course, my answers are never that simple.

Here is why I run…

I run to make her feel real.

It’s been 3 years. After a certain amount of time, it starts to feel like a dream. Some movie that you watched once but you were in it somehow. You had to of been in it because you are somehow in the pictures. I kick myself for taking the pictures and not being in more of them with her. Every once in awhile I catch a picture that someone took of me with her and I can barely breathe because I know THAT moment was real. The one that Angelo took of me with her in my kitchen. Those are real. That is a moment. She was dying and I knew it… but I still was just her Mommy in these pictures. But now, seeing her clothing in the house just feels like costumes from that movie. Even the pink dress I work to her funeral, I’ve tried to wear it on different occasions to get use out of it, but it is now just a costume too that can’t be worn in every day life. I don’t even dream of her. I wake pissed every morning when I have stupid dream about people I work with or some unknown face. Why can’t I see her even when I sleep? Is that too much to ask? I open my eyes each morning and look down the hallway, expecting to see her walking towards me holding her 10 blankies in her silkie pony pajamas. But, that too is just a scene from a movie in my mind. I live my life sometimes, forgetting what all happened in this house. Maybe I have to so that i can continue living because it’s a nightmare. But then I get upset with myself for wanting to forget. Some days I just want to feel her against me. But I know that is a dream that will never come true, so instead I search for ways to feel her again.. and this is why I run.

Things that make her feel real for me:
1. Visiting her site. Nothing brings it right in my face like putting my hand on that name plate.
2. Race day. When you see me, know that I’m probably drinking/drunk. I’m trying so hard to hold my composure knowing how she would of just loved being part of this day.
3. Running with the DreamTeam. Watching people get up at 6 in the morning and put on a shirt with your daughter’s name on it. Some of you knew her and some of you didn’t… and she is impacting your life. I know it sounds corny but I feel her running along side us every time we run. Laughing and singing and giving hugs to us all when we finish.

She won’t visit me in my dreams, so her gift to me is giving you all to me in another form of a dream. The Dream Team.

My goal is to raise $25,000 this year. If I hit that goal, I’m going to run back to back half marathons in November. 26.2 miles in 7 days. Help me hit my goal and give to the link below.

-Isabella’s mommy

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Erins Shoes

Why People Do Nothing

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Day 13 QuoteDay 13
Why people do nothing…

I’ve been writing for 2 weeks and each night I’m blown away at the amount of people that are reading them and responding to them. I wake up each morning and before my eyes are barely open; I’m on my phone seeing if anyone made a donation and what our current number is for race registrations. Every once in awhile I will see a bump in things or a donation will come through my page. But it’s never what I think should be happening.

Childhood cancer can often be like a car crash. You drive by slowly and can’t take your eyes off of it. You read the blogs, you follow the children and then when you close your computer, you go back to your normal life. “Wow, that accident looks horrible, I hope no one was injured”, you say as you drive by slowly. Then once you pass it, you turn your radio back up and continue driving. How many of you would actually get out of the car and see if you can help. That’s what I’m asking you to do. Stop driving by it… get out and do something.

I’m sure I was the same way. When you aren’t affected by cancer personally, the only time you are faced with it is when it’s on the news or you receive your St. Jude’s return address labels in the mail. Occasionally you give the $25 and you use the stickers they send. Or you just look at the family and thank God it isn’t you.

Well it was me. It was us and it was her.

I had to put my child through unspeakable, painful treatments and in the end had to watch her die in my bedroom. I wasn’t able to just drive by like the rest of you and watch from a distance. I had to stare her in the face. Unfortunately, people don’t change until they are forced to. For us, the curtain was pulled back and we were exposed to a world of unbelievable sadness and despair. It changed us forever.

You hate to think that something like our situation has to happen to you in order for you to get up and move, but that is usually the case. Instead of waiting for it to hit close to home, I’m asking you all to do something to prevent it from happening to anyone else. It may not be your child that gets cancer, but someday your child could have a family and it could be your grandchild that suffers. Our goal with this Foundation is so when your grandchild receives that diagnosis, there is a cure and he or she will live.

You will thank us one day for saving someone you know. So ask yourself this question, what if it were your child? What would you do then? How would you respond? So today, do something… take action as if it were your child in the hospital, or your grandchild just received this diagnosis. Cancer doesn’t discriminate and no child is safe so it may be your own family your are eventually protecting.

Stop reading and watching the car crash… get out of your car and help these kids, because one day it could be yours.

-Isabella’s mommy

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Why New York Was Our Home…

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Day 11 Quote

Day 11

Why New York was our home…

I have to be honest; the thought of treatment in New York was exciting to me initially. Not only were we going to get the best treatment available, but we were also going to have an amazing experience in the process. I had to been to New York a couple of times but the thought of going there with a child, let alone a sick child – had me a little nervous. Do they have car seats in cabs? Will I be able to get around the city with her? Will the germs and crowds of New York make things dangerous for her? And most importantly, what will Isabella think of New York?

It took some time to get settled. The hospital was huge and a little cold to outsiders. The families in the hospital ran in clicks based off backgrounds and religion. Even the Ronald McDonald House dining room was separated by groups of families that had history together. We were definitely outsiders in this city and we could feel it.

This separation within the world of cancer in New York didn’t stop us one bit. Because we were loners, we took it upon ourselves to take in everything we could in the city. Chemo was given in a backpack so she and I would strap in and explore the world around us. We would spend days as I pushed her in the stroller to Central Park, Grand Central Station, Times Square, Bloomingdales, the American Girl store, you name it. We weren’t afraid of anything. We rode the subways and she hailed cabs. We visited the Statue of Liberty, Rockefeller Center, Ground Zero and lit candles in St. Michaels Cathedral. If there was something to see, we saw it.

We met amazing people in New York and developed our own little New York posse. We had people to eat dinner with; people to grab coffee with and even people that would sit with Isabella if one of us needed a minute to ourselves. Isabella loved the people we met and considered them part of her family.

For three months during a brain relapse, we sublet an apartment on 86th street by Gracie Mansion and called New York our home. We were on one of the highest floors and had an amazing view of the city. I specifically remember being there one September 11th and seeing the lights of the twin tower shining up in the sky as Isabella and Grant pressed their noses against the glass in awe. We watched all the documentaries on the couch and everything had a different feel to it now that it happened in “our city”. We made sure to make our way down to Ground Zero that week and spoke about it best we could with Isabella. It was so hard for her to understand. But, it wasn’t the first or last time she was exposed to tragedy and adult situations.

New York was such an amazing city for us because it provided her with the memories that clouded the pain. Nothing we did mattered during the day as long as we could go the American Girl Store and buy a new outfit for her doll. We would try on shoes at Bloomingdales, grab bags of candy from Dylan’s Candy bar and eat at our little pizza place around the corner where they knew Isabella. After dinner we would take stroller rides around before bed and take in the city around us until she fell asleep. These walks would allow us, if even for a minute to forget was happened that day, or what was in store for us that next morning. We found so much comfort in our new home, despite what we were going through.

New York was a gift to us during all the horrible years of tragedy. It’s hard for us to go back because everywhere we turn is a memory of her. We want Grant and Sophia to experience it just as Isabella did and plan to bring them there over Christmas to see the Christmas tree in Rockefeller Center and see the Rockettes, just as we did with her. We want them to love the city and know that their sister grew up here, she was a New Yorker and we will always refer to it as one of our homes.

-Isabella’s mommy
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Ib In NYC

Why We Haven’t Touched It

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Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 10
Why we haven’t touched it…

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She barely lived in it. It’s been vacant for 3 years now. I remember her helping paint the walls pink and purple stripes. The rollers were so big she could barely hold them up. She got her new white furniture with a side table, dresser and desk for all that homework that she had planned to do. Truth is, I can barely remember her sleeping in there. So many times she would end up in our bed due to sickness or if Stuart was traveling, not to mention all the nights in the hospital. If she slept in there one hundred nights I would be surprised.
But the room is all her. Her pajamas are still in the drawers, her dresses still hang in the closet and her shoes are still waiting to be worn. Her dresser is covered with pictures of her best friends, her family and “get well soon” cards from classmates. The bookshelves have her library books that I’m sure the Elementary school as decided not to ask for. Her desk is filled with drawings and notes that were never finished. There are beaded necklaces that we made in the hospital, seashells she collected, diaries with kittens on them and Taylor Swift CDs in every drawer you open. I have still not gone through it all because I’m always afraid of what I will find. Last year I found a Mother’s Day craft she made me at school just a month before she died that she never gave to me. That is when I just decided to close things up for awhile.


There are books out there for everything these days when it deals with children. “What to expect when you are expecting” was supposed to be the roadmap for pregnancy to follow. Where is the book on “What to expect when you aren’t expecting?” Where is the manual for parents on how to deal with things like this? I need a roadmap and here are some things I need to know…


1. What do I do with her clothes and when do I start to actually do something with them? Do I make her clothes into blankets and give them to people? Is that creepy?
2. What do I keep and what is junk? Do I keep everything that she ever wrote on? If I throw it away will I regret I did that?
3. How long do I keep this room going like this? Am I supposed to have a little girl’s twin bed in there forever?
4. If I make her room something else, what do I do with it? If I make it into another guest bedroom will people be wigged out sleeping in there? Feels even more disrespectful to make it into an office or something.
5. What do I do with her furniture? Is that another thing I will get rid of and then regret I got rid of it? I keep finding places on her furniture that she actually wrote her name on. Seriously?
6. Do I put her stuff in storage?
7. When do I do all of this? At what point is it okay to have her room still the same, and at what point does it become creepy? When will people start saying, “I think it’s time they did something with that room.” I definitely want to do something with it before that conversation starts happening.


All these counselors will tell you that this stuff should be done whenever you are ready. There is no timeframe that should occur. But there has got to be. There is definitely a line out there in the universe that you cross too soon or too late. It still feels too soon to me because every season I think I can tackle clothing and I just crumble. But, I know it all can’t stay like that forever. It eventually will need to be tackled, just not sure on the rules for this stuff.

-Isabella’s mommy


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Why I am Not a Nut Job

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Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

DAy 9Day 9
Why I’m not a nut job…

September comes around and I feel the urge to write. There is so much stuff out there written this month for Childhood Cancer Awareness month. Some of it applies to my situation, but some of it doesn’t. Some of it is weird. Hell, my writings are probably weird. But they are relevant to me because they are my life stories. However, they are not my every day life stories.

I get to log in and see all the great comments of Facebook when we push these blogs. Everyone is so positive and supportive on each of my posts. One common theme though seems to be worry about my mental state. I get it. I realize that I must sounds like a complete nut job in these posts. Truth is though; these posts represent about 5% of what is going on my brain. I just pull them out this month and talk about them openly with total strangers. Okay, maybe that is a little bit of nut job behavior.

Every day I am honestly just living my life. There are plenty of days that go by where I don’t think about the horrible movie I was in. I’m like most of you who think about work, or what the kids have going on today, or where I left those expensive pair of jeans I just bought, or which guy the Bachelorette is going to end up with. I’m able to walk by her room without thinking too much about either. Her room has been vacant now for 3 years, which is longer than she even lived in it. Sophia is growing out of the last remaining bit of her clothes, so unless I’m looking for something specific, her items are finally being filled away.

I’ve even seen her pictures so many times through the Foundation that they are beginning to seem like those pictures that come free in frames of people laughing and enjoying their lives. I have to remind myself that it is Isabella in that photo or better yet her and I in that photo, otherwise I tend to walk right past it. The only pictures that get me are the ones that catch me off guard that I have never seen or forget that I took. Those rattle me.

When you see me out and about, I look normal. I act normal. I seem normal. Actually, I’m starting to feel normal. I know the times of year when I can be a nut job and I tend to keep those days very hidden from the public. Her birthday is hard; the day she passed away seems even harder. Holidays are getting easier. I find that I even hide out less at the race; I’m actually out mingling with the masses. Where as years ago, I was hiding under the silent auction tables. ☺

I think my every day grief has presented itself in the form of little ticks I have. Loud noises, high anxiety and losing the need to have people or touch in my life. I’m a little closed off, I don’t like to meet new people and I’m incapable of small talk. I crave being alone and could days without talking to anyone. But honestly, I think those are just issues that I’m developing as I’m getting older. Not sure if those have much to do with grief. That’s just normal Erin nut job stuff.

So while it may seem that I’m about to jump off a cliff during these posts, just know that it’s a moment in time for me and I’m really just sitting here on Facebook, eating a turkey sandwich still in my pajamas like the rest of you.

-Isabella’s mommy

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