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She should of been there…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

She should of been there…

“There are some things I just can’t do. Today is one of them. Her kindergarten class at Marvin Elementary school celebrated the new exciting frontier ahead of them that is Middle School. It’s crazy for me to think that I’m old enough to have a middle schooler. Especially with all the money I pay not to look like I do. I’ve watched them all from a distance over the last couple of years, wondering which group she would of been in. I must say, I even miss the drama that would of ensued with her friends and the talk of boys in my backseat. I skipped through all the heartache, pain and joy of having her in her last year of elementary school. I knew the class was going to be taking a minute during the ceremony today to remember her and both a financial and sentimental dedication would follow. I know the right thing to do would to have been there, and smile when they put her picture up on the screen. But I know in my heart I would have been scanning the room. Wondering if these kids are really touched by the loss still, or if the parents are feeling a little more grateful today when they see their son or daughter’s name being called out. Grateful they are not me. I appreciate her being remembered today but honestly, it’s a day I want to forget. Another milestone, stolen from us because we drew the short straw on life. She should of been there.” Isabella’s Mommy (Today, June 8, 2017)

Today, Isabella should have graduated from 5th grade. The impact she has left on her classmates and everyone around her holds strong… as evidenced today by the dedication her 5th grade class made to her. Yes, Isabella should have been there celebrating with all her friends. But her spirit and legacy is incredibly inspiring… and we thank Marvin Elementary (Union County, NC), her teachers and friends for honoring her to ensure she is never forgotten. Along with the dedication, the 2017 fifth grade class families organized a financial donation presented to ISF. We can’t put into words what this means to not only Isabella’s family…. but her foundation. A plaque remembering her will hang in the hallways among the hand-painted tiles that all of the 5th graders completed as their legacy class gift.

Forever a Marvin Mustang.

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

The House That IB Built

IV cart rideBy: Erin Santos/ “Isabella’s mommy”

When I look back at who we were in 2012, everything made sense to me. It seemed that every person involved with the Foundation knew us personally or had followed our story in some way. Nothing needed an explanation or back-story as to why we did the things we did. But now I find myself in 2016 and I look around me to the growth of the Foundation and I’m happy to see new names and faces. I’m always amazed with people who are so dedicated to our mission when they never had the pleasure of laying their own eyes on my daughter. Those people have become just as special to me as the family who was with us from our initial cancer diagnosis. These people stand next to us without asking questions or without looking for reasoning in our decisions, and for that – I am grateful.

When your organization starts to grow, everything from your logo, to the colors you use, to the stories you tell have purpose. It all makes perfect sense to me because I was here from day one. But for all the new followers, these things must just seem natural for ISF. Sometimes I find that telling the story of where we came from helps put more understanding around who we are today.

So with that, I want to introduce you to the house that Ib built.

The Isabella Santos Foundation:

In the beginning it was just about her. We weren’t thinking globally. Looking back, it probably would have made more sense to name ourselves something general so the Foundation would be applicable in Nebraska, just as it is here. It says nothing about cancer, or beating cancer… it’s just about her. She became a little celebrity in our little community and it was no longer about that little girl that was just diagnosed with cancer. People knew her name and her face and we were okay with that. We didn’t want to hide behind something bigger.

Our Ibby logo:

Sometimes you see an image and it just clicks. We saw an image online once of a stick figure little girl. It was very innocent and child like. Because of Isabella’s physical limitations, art became her safe place. When you find yourself in hospital beds day after day and you are too weak to walk down your driveway, you have to find something that speaks to you. For her it was art. She would spend hours drawing and coloring. All she needed was a white piece of paper and a pencil and she would be entertained for hours. She would draw pictures for everyone and it became her way of saying thank you. What started as a stick figure little girl that Isabella could easily draw and color, became something else. The logo changed to be the girl on the world because that is how we saw Isabella. The world was at her fingertips and no matter what happened to her, she was going to conquer anything. That simple logo has moved and shaped into a life of it’s own now. I love watching all the things they can make our little “Ibby” character do. Often times I find myself jealous of all Ibby can do because my Isabella struggled. But maybe Isabella lives through that little logo and is finally able to do all the things she wished she could have done.

Who is Ib/Ibby?:

If you were in our home, you knew that this word was used a lot. Now thinking back on it – I’m not sure how I started using it. Even when I go visit her site at Calvary, I kiss her immediately and call her Ib. It always feels so good to say it when I’m there because it’s a word that has vanished from my vocabulary. Ibby just seemed like such a great name for our logo because it was her, but an extension of her in a way.  She was referred to by so many different names and they all have meaning behind them. Isabella was her formal name. This is how the industry people referred to her (doctors, nurses, strangers and supporters). “Bella” was the name reserved only for Grant and Sophia. Because they were so young at the time, Isabella may have been too difficult so Bella became how they knew her. “Isabella Jo” was one of my favorites because if you were her true friend, you knew her by Isabella Jo. She had such a common name in preschool that we decided early on to find something that could make her unique. Joanne was her middle name, named after Stuart’s mother, Joanne, who passed away before I met Stuart. Isabella Jo just seemed perfect.

Purple:

I know childhood cancer is supposed to be gold. You try telling a 3-year-old little girl that everything we are going to do for her will be gold. Good luck. When we started getting things organized, all she wanted was pink and purple. This is confirmed by the hours we spent painting her room upstairs in pink and purple stripes. We all know that pink has been owned by another organization so good luck incorporating that in anything you do. So purple it was. Not that we didn’t believe in supporting childhood cancer as a whole, we just didn’t think we had to conform to the standard to do any good in this world. We were building something initially based off Isabella and what she embodied. That is why we are still purple today.

Beat Cancer. Grow Hair. Live My Dreams.:

This might just be one of my favorites. When you have a little girl with cancer, the actual cancer is a little harder to hide. I found myself envious of little boys who could throw on a hat or get away with the regrowth buzz cut look. But when you have a little girl in a crazy dress with purple knee high socks and tennis shoes running around, a bald head can be a little harder to hide. So instead of hiding, she embraced it. We found the shirt online among other great shirts that she loved to wear like “I love my oncologist.” She proudly wore this shirt for many reasons. First because above anything, her wish was to beat cancer, but coming in a close second was to grow her hair. Sometimes I think she wanted her hair back more than she wanted to beat cancer. Live my dreams…boy did she have dreams. None of them were on hold because she had cancer and they were big dreams.

She was constantly drawn to making wishes. The amount of money we spent throwing coins in a fountain would pay a mortgage. We would have to listen to her spout out these wishes with each toss into the water. Sometimes hearing these from her would make us smile, especially when we felt like we were winning the war. But other times it would be like a knife in our heart when we were in a battle that we didn’t know if we would win. Add on top of this the theme of “Wishing upon a star” thanks to Disney and a religious preschool that introduced bedtime prayers. Welcome to Isabella’s reoccurring three wishes that we heard over and over and over.

The 5K/10 and 1-mile fun run for Kids Cancer:

It started by an idea to get some people together to show support for a newly diagnosed family. We were Ballantyne residents who worked at LendingTree in the Ballantyne Corporate Park. A couple of friends threw together some shirts, a start line, a finish line and some refreshments and we were off! We had about 170 people at that initial race and raised just over $7,000. We watched Isabella run awkwardly across the finish line that year with a fresh scar on her head from a brain relapse. She would attend 5 more races with us before she passed away.

You will still find us with a start line in the Ballantyne Corporate Park in September, but we have grown a little. Last year we had close to 3,000 people at our event, which is no longer just a basic run. It’s not a run anymore; it’s become an event. Silent auctions and raffles, kids zone, food, music and a sense of community like you have never seen thanks to sponsors, volunteers and participants. Our event raised close to $400,000 last year and this year will blow that out of the water. Don’t believe us? Come check it out. You will come year after year.

Where we give:

For me personally, where we give our money makes sense. Honestly, if it doesn’t make sense to someone – it’s a hard pill for me to swallow. We give to what mattered to our daughter. Plain and simple. Saving her friends was always first and foremost the most important thing to her. This is why 90%+ of our funding goes to Neuroblastoma research. It’s why we are here and why she isn’t here. But for us, giving to the Make a Wish Foundation and Ronald McDonald House are important to us because we never would have made it through our amazing journey without these organizations. The Make a Wish Foundation gave Isabella some of the most amazing days of her life. From our actual trip to Disney, to the Taylor Swift concert to the days as a TopCat. Looking back on her short life, you become extremely appreciative of the experiences they are able to have since they are robbed of graduation, marriage, children and everything else we take for granted. The Ronald McDonald House allowed us to be treated in New York City for just $35 a day. So many nights and wonderful memories were created during her treatment and the majority of those were in New York City. We could never have been treated there without accommodations through the Ronald McDonald House and this is true for all families who have to travel for treatment. We also occasionally help out local families with a mortgage payment usually in the beginning or ending of treatment. Local organizations provided us with this during our battle and it was a lifesaver.

I think it’s important to thank the people who helped you in your time of need. So this is what we do. Neuroblastoma is our mission and everything we do is with that in mind, which is why almost every dollar sent out from ISF goes toward Neuroblastoma research. But this organization was built off Isabella and what was important to her. Every organization is different and I think that is what makes us all special. If she told me she wanted us to give money each year to the Humane Society – then we would do it. Because in the end it’s all to honor her. This is what she believed in, so this is what we do.

Who we are:

We are Isabella. Every single thing we do is for her. Where we give, what we say, what we do, the standard to which we hold ourselves. We are honest and true and giving, all things she was. I love the compliments we receive about how we run our organization. I take them as compliments for each of us that work on the Foundation day in and day out, but it’s also a compliment to her. Because in the end, we are all just extensions of Isabella. Our work is done in her honor and we hope, like her, we will one day conquer the world and make all of her dreams come true.

Thank you to all of you who have supported us from day one up to today. I realize that without her here, it can be hard to see what we are trying to do. But know that she is still here and she is working through each and every one of us to make a difference. I can’t wait to see what we accomplish together.