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.


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.




Team Work Makes The Dream Work

By Guest Blogger: Julie Smith
Training with this team has been such a blessing in my life. I’ve created some amazing friendships and I’m thankful for this dream team. As I like to say (and so does Coach,) “Team work makes the dream work.” That’s a powerful statement when you think about Isabella’s dreams to #beatgrowlive. Despite the fact that cancer stole her from us, we can make those dreams come true for other children fighting cancer today.
This weekend the team ran the OrthoCarolina 10k and it was my first time running that specific race. It was challenging, but I’m glad we got to experience it all together.
We lined up for the start and the team was chatting, cracking jokes, taking selfies and getting pumped to run. I loved having people there to experience the race together. Kelly and I took off and we’ve been “pace partners” for the last year. Meaning, we run together. She pushes me, I push her. As Kelly says I’m her “stuff.” She doesn’t run with music or anything to track her distance/speed, so when we run together I keep her from running too fast early on, and encourage her to the finish while she does the same for me. This race was no different.
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We crossed the start line and we remind each other that slow and steady wins the race. We’ve read about runners that go out way too fast and don’t have enough in them at the end to finish well. We made the first turn and then the first hill was upon us, so we remind each other to take small steps, not look too far ahead and we push through it together. Side by side. Sometimes we need to remind each other about those running mechanics, but really it’s knowing that the other person is there, cheering us on. I can’t let her down.
As others dream teamers run by, we cheer them on and give some high-fives. We know that we are running together, but also on a purpose much bigger than this 6.2 miles. We are running to crush cancer.
The hills continue throughout the course and we stick together. Towards the end, we are both tired and we are fighting to keep going. We encourage each other with random phrases, mostly me singing T Swift or talking about the food at the finish, and then we come in at the last tenth of a mile and we hear it– the dream team cheering us on. There’s a whole group of the team in purple, clapping, yelling and cheering for us as we push to the finish.
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Team work makes the dream work. 
P.S. Photos courtesy of Kelly C.

Do it Again

By Guest Blogger: Jessica Hall

Screen Shot 2016-08-22 at 11.01.56 AMDo it again. This is a phrase getting me through some of the tougher training moments lately. With our half marathon less than three months away, we are far past what I have ever done before as a runner. Each day I have to choose to fight the excuses and push toward the goal. When I’m tired or discouraged, I tell myself: Do it again. When the speed workout on the track seems impossible: Do it again.

After all, as many Dream Team members say, cancer doesn’t take a day off. Isabella fought again, and again, and again, and again. So I will run again, fighting and pushing and fundraising for a cure.

Early morning alarms aren’t easy. New mileage goals aren’t easy. Unbearable humidity and heat aren’t easy. But neither is the battle these kids fight or the struggle these families face. So when I want to scream and complain in training, when I wake up in the morning with new aches and pains, I tell myself: Do it again. She did.

There is no excuse for the lack of funding provided to fight pediatric cancer. The statistics Erin shares make me nauseous. The most infuriating statistic of all is that all 12 major types of pediatric cancer combined receive less than 3% of the National Cancer Institute’s budget. The American Cancer Society spends less than 70 cents per $100 raised on pediatric cancer. All while a child dies every 16 hours from just one of these 12 types of cancer. If that doesn’t take breath out of your lungs and make you want to do something, I don’t know what will.

It seems like a no-brainer that people would want to help kids who are in desperate need for a cure. It amazes me how many people will “like” a post on social media as we ask for donations but don’t pull out their wallet. When I’ve approached several acquaintances about donating to ISF, I’ve been told some variation of: “Oh, well I donated to [insert foundation here] a few months back.” Any guesses what my response has been? Do it again.

Today I want to encourage you to put away the excuses and pick up your wallet. Is that direct of me? Sure. With stakes this high, why not?

Regardless, I urge you to take action. And then do it again and again. Let’s make Isabella’s dream of a world with no more cancer a reality– one donation, one mile, one action at a time.

Beat Grow Live- Marathon Style

Speedwork PicIsabella’s wish was to BEAT Cancer, GROW Hair and LIVE my Dream – for any supporter of ISF, these words are never far from our hearts. As a Dream Team Member in the middle of marathon training, these words hold additional meaning:

BEAT: Any runner will tell you, we always want to beat our PR (Personal Record). I’ve had a goal set for the past 2 marathons – 4 hours and 30 minutes. In 2014, I missed my goal by 8 minutes. Last year, I crossed the finish line at 4:34. Yes, it was a PR for me, but missing my goal by 4 minutes was discouraging.   This year, I remain steadfast in my goal and am determined to break 4:30. I’m training harder this time around. Instead of training for a 4:30 finish, Coach Tom has advised me to train for a 4:15, so I give myself a little leeway during the race. I’ve added cross training and speed work to my training and I’m confident that this is the race I’ll finally BEAT my goal.

GROW: I find myself pushing myself far past my comfort zone during marathon training. A few weeks back, I met up with Coach Tom and joined him for hill repeats. It was the first time I had ever done them. To race up a giant hill, only to run back down and do it again, was definitely a challenge. I thought nothing could be harder, but last week I found out I was wrong.   I looked on the training calendar and on Tuesday it said “4×800”.   The numbers looked easy, the reality was hard. I met my teammates at the school track early in the morning. We sprinted 2 laps around the track, then recovered for a lap and repeated 4 times.  It was no joke, and I don’t know if I could have completed it all if I didn’t have my teammates with me. I left that morning feeling exhausted and empowered. It’s hard training mornings like those that help me GROW as a runner.

LIVE: Marathon training can be all consuming. I plan nights out based on what the next morning holds and I don’t commit to weekend plans until I know my Saturday morning mileage. For some, it may seem constricting; by I find comfort in the calendar. There is a satisfaction in crossing off each completed run – getting closer and closer to race day. For 18 weeks, we LIVE by the training calendar.

Training CalendarEvery time The Dream Team runs, we do it for Isabella and other children fighting cancer. We Beat, Grow and Live Marathon Style, so that we can help make Isabella’s dream a reality.



The Faces of ISF…Meet Colleen Hinsberg

Getting to know youNames/ages of children: Julia (13) Meghan (10) Brittany (26)

Years married and to whom:  Tom Hinsberg (20 years)

Years in Charlotte:  16

Neighborhood: Tega Cay, SC

Hometown: Sarasota, FL

College Alumni: Florida State University

Occupation: Director of Sales- Contour Products

Years Involved with the Foundation: 9

What is your role with the Foundation: Race Director

How did your involvement with ISF begin? I worked with Stuart and Erin at Lendingtree and was with a close friend of theirs when they got the news that Isabella was sick. From that first day I felt inspired to help in any way that I could. Over the years I have taken on more responsibilities within the foundation and became Race Director 3 years ago.

What is your favorite story about Isabella? My favorite memory is from the 2011 race when we had some rain towards the end of the race. We were scrambling to get raffle items and food moved under the tent and the DJ was still playing music. Isabella stopped and started dancing and I looked around and a whole group of people there, stopped and danced with her. All of us- children and adults stopped our hustle bustle and danced in the rain. It was awesome.

What is one of your top ISF moments? On race day the year that Isabella passed away I was running around like a crazy woman. Someone grabbed me and said stop you HAVE to come see this. I walked over to the starting line to see 2000 people decked out in purple all the way down the street. It was overwhelming to see how we had grown. The emotion was so raw that year and that crowd was incredible to see. Each year now I MAKE myself take a moment to take all it in. From 175 people the first year to over 2500 participants last year. The community support is amazing.

Where do you see ISF in 5 years? I see ISF being very involved in a minimum of the 25 NMTRC cities raising funds and raising awareness as kids are continuing to win the battle against relapsing with Neuroblastoma

What is something you think ISF could improve on this year? I love that we are now sharing the immediate impact of how we are using the money that we raise. Knowing the number of children that we are impacting is such a great story! I look forward to many more of those kinds of stories this year.

How has ISF impacted your kids? This is where ISF has impacted my life the most. My kids have learned the generosity of people who are willing to donate to their races, bake sales and lemonade stands. They proudly support ISF and tell Isabella’s story as often as they can. They have a true sense of community and are willing to give their time and energy for a cause bigger than them.  The are more generous and more active because of their involvement with the Foundation. They are also my biggest cheerleaders when I am fully wrapped up during race time. Seeing Julia finish her first 5K at one of our races was a very proud moment. The fact that she is joining me this year as a part of the Dream Team is even better!

Who are your role models? I feel like we have all said this but I have to say my parents. They were happily married for 62 years, raised 5 girls and taught us all the value of family and friends. Through them, I learned to work hard, respect others and take time to play hard too.

What is something about you that would surprise people? I am the youngest of 5 girls and my sisters and I have 8 daughters between us. Not a boy in our family!

What is your biggest pet peeve? I have a really hard time interacting with passive aggressive people. If you have a problem, tell me what it is and let’s figure out how to solve it. I’m not good at trying to figure out what is upsetting you.

What is the hardest thing you have ever done? My parents passed away within 6 months of each other 2 years ago. It was huge and sad and putting one foot in front of each other was hard for a while. I knew I had get my act together and came out at the end, a stronger and happier person.

What do you love to do in Charlotte? We love to spend time on Lake Wylie.

What are a couple of your guilty pleasures? I love brownies. Even when I am training and “trying” to eat well I will say yes to a brownie almost every time.

Who is your celebrity crush? Matt Bomer. I “know” but he’s still adorable.
What is your favorite drink? I’m a beer girl