By: Erin Santos:
10-year-old boys, well I guess he is 10 ½ . You gotta love them. Right? I feel like I have written so many blogs about how amazing my kids are, but we know that is not how kids are all the time. Grant is killing me right now. I think he is just really transitioning into a pre-teen and it’s happening kind of fast in this house. Sometimes I think I’m raising a little Ryan Seacrest, which has its good points and bad points. Needless to say, he is killing me every day lately so I thought I would share the darker side of Grant for all those parents out there who feel this pain.
Top 10 ½ things Grant is doing right now that are killing me:
- He stinks. I am watching this very carefully. I crawled in bed about a year ago to give him a little cuddling before he fell asleep. The minute I snuggled in, my eyes burned. I immediately told him to jump in the shower and from that point on, deodorant has been a daily routine. But even with the product in use, the minute I pick him up from Student Council and he pops in the front seat, it’s a smell of grass, sweat, pennies, dirt… I don’t even know what. I have to roll down the windows immediately. Grab a couple of his friends and you have to take you car in for detailing.
- His teeth. They are all in this weird phase where they lost their baby teeth so they are all walking around these massive horse teeth. Not to mention when they walk in the door and dive into a Cheetos (Baked, mind you…) snack pack. He walks over to me as I’m on my computer to tell me about his day while shoveling these things in his mouth. His lips and teeth are covered in orange disgusting crap. When I look up I stop him immediately and say, “Nope. Finish what you are doing and go brush your teeth. They look disgusting.” An eye roll usually follows from him and the dumping of the entire bag into his mouth. He will then proceed to come downstairs after 30 seconds of “brushing” only for me to send him upstairs again. This will take about a total of 4 cycles until his teeth are a shade of green that I can live with. I’m also constantly dousing him with mouthwash. How do these kids even talk to each other with this kitten breath? These poor teachers.
- Dabbing. I get it. It was cool. Cam Newton is amazing. But enough already. Not only did I have to live with a year of dabbing but also now the dab has turned into eighteen different dance moves before the actual “Dab”. We also dab when we sneeze, when a cool song comes on and really any life situation that has some break that calls for this move. He is also become critical of any other dab and told his little sister that her basic dab is not cool and she should stop doing it immediately. Kill. Me. Now.
- Flip Cup. Can the boy from Ardrey Kell High School that created this fad be punished in any way? I’m all about kids doing something that is not electronics, but really? Hours of entertainment? I chaperoned a school field trip a couple of months ago and about lost my shit on my group of boys that were more interested in who could land the Gatorade bottle perfectly on the ground than hearing about how old guns were made. I get it. But by the end of the trip, every single bottle was confiscated. I also just found my son standing naked in his bedroom the other day flipping a water bottle on his dresser while the shower was on for 15 minutes. Is this a real skill? Are there scholarships for this? No. Give me the damn bottle.
- Music. I have probably done this one myself. I’m a music lover and all day every day there is music on in my house. The problem with introducing your kids to this is that they latch on to your favorite song and then play it over and over and over until you want to never hear it again. There is nothing less cool than jamming out to “Fake Love”, by Drake and listening to your son and his friends not only jam out with you but know every word and have dance moves with dabbing involved in it. Nothing kills a song more than my son.
- His hair. It’s official. I have become that parent I said I would never be. My Dad always rode my brother’s ass about getting a haircut and shaving his entire life. I always thought how silly it was because your hair is YOUR hair. Then I have a son and I find that I want that short military cut on him every time because he looks ridiculous. He wants to grow his hair out and have grow over his ears and down to his eyes and then flip his head so his hair falls just right. I just stare at him when he does this. My husband takes him for haircuts after many fights, only to have him walk in the door and I say, “Seriously?” To which they both roll their eyes at me, followed by a talking to by my husband that tells me to chill out about his hair. He has also been begging for me to let him dye it for about a year. I just agreed and dyed the top of his head red yesterday. He looks ridiculous and loves it. Whatever.
- Face Time. I find myself saying, “Who the hell is he talking to?” every other day. I jump off the couch and run upstairs to find him FaceTiming another buddy and they are pretty much just watching each other flip water bottles. He then turns the screen around on me and some kid says “Hi” to me as I stand there in his doorway in PJs and no bra looking like an idiot. My favorite is when I catch him sitting in his bed talking to a girl and he has no shirt on. I stop this immediately and just about take the hinges off the doors. Yes, I am becoming that mom.
- Sleep. I know the 8pm bedtime isn’t working as well as it once did. He is getting older and feels like a 6 year old by making him go to bed that early. We try each night but he takes some 30 minute shower (don’t even get me started… I don’t even want to go there…) and then comes downstairs to get a drink, get some book, give me a kiss, whatever. Then it’s 9:00. Waking him up in the morning is also my least favorite task in the world. It’s about a 30-minute morning struggle where he proceeds to ruin my morning because he makes us all late. We have blown air horns on him, poured water on him, you name it. We have now moved to where we no longer even get him up. We wake Sophia who is a ray of sunshine each morning. If he gets up and makes it to the car in time, he gets a ride. If he isn’t ready – he walks to school. Best part is that on Saturday mornings, I hear his ass up at the crack of dawn because he is allowed to play on his iPad on Saturday. Um…. I thought you were exhausted? I can’t even.
- His need to be entertained. What am I a damn cruise director? Heaven forbid all of his buddies in the neighborhood are busy or out of town. You would think his legs were cut off from under him. There is absolutely nothing to do or nothing to play with. What really kills him is when I don’t allow him to have a friend over. GASP! You think I am the devil that I don’t want to watch other people’s kids all weekend. These days are usually filled with him following me around to tell me how bored he is or asking me, “What should I do?”. My favorite days are the days when no one I know is here or in town or wants to do anything. Days when I can just sit alone quietly. For him, this is equal to death.
- His diet. If I allowed this boy to eat Fruit Loops, Doritos and Soda all day every day, he would do it. I pride myself on having the healthiest food on the block. This way, random kids aren’t walking in my house for snacks. They know it’s a banana or a yogurt. Actually most kids will have a snack at their house before coming here. Bonus. Honey Nut Cheerios are a stretch for me to buy at the grocery store. But like always, every time I leave town my husband goes to the store and buys them junk like Fruity Peebles that are probably ridden with cancer. Grant tells me I’m the “Cereal Nazi”. I come out looking like the crap Mom once again because I try to keep them alive. Last summer I was over him asking me for soda every day. So I bought him a 2-liter of Sprite and made him drink it all in one day. He had diarrhea for a week, but didn’t ask me for soda all summer. Let’s not even start on the table manners and how he shoves everything in his mouth like it’s his last meal. He then wipes his hands on his pants even though I put a napkin out for him. I no longer sit at the table with the kids.
1/2. His butt. I’m a “runner”. Because I’m a runner, I tend to lose my butt. So I spend quite a bit of time in the gym doing squats to have something that resembles a tush. This kid will stand there naked and talk to me for hours. He turns around to walk away and his butt is like two gigantic grapefruits. It really is unreal. How can I be jealous of his rear? But I am. It is the butt that I strive to have every day, and he just walks around with it. I think he knows he tortures me with this ridiculous backside. He just shrugs it off when I tease him about it, like, “Yeah… I guess it’s just something I’m born with.”. I hate him.
I could probably go on for a couple more pages here. But because my boy is ahead of his time, he is probably on Facebook reading this with an account I don’t even know he has. He is about 2 months away from being smarter than me and I’m trying every single day to keep him alive but stop myself from killing him.
I’m nervous for 11.
By: Erin Santos (Isabella’s mommy)
I’ve written some things in the past that have made a difference or gotten someone up out of the chair. For the first time this year I thought, I’m not going to write something because people finally get it. I’ve written about how “awareness” is a bullshit word and how instead we should take action. I’ve written about what all cancer steals from a family when someone dies. And last year I wrote 30 days of “whys”. Why people get divorced, why I stopped visiting her, why we cremated her and more. I have poured my heart out year after year, picking my scab and pulling back the curtain on what cancer, loss, and heartache is really like. So I figure you get it now.
Each year the foundation grows more and more. We see more dedicated people coming to support the cause who never even knew Isabella. People would tell me what we are doing here is phenomenal. Most non-profit’s had a run rate between 8-10 years before they close their doors. They slowly lose their supporters. But we were different somehow. We had some secret sauce to what we were doing that meant we were going to survive the charity down turn. Even more amazing is that we were doing this all without Isabella standing on stage or asking people in Target to come to her race. Maybe we were going to be the charity that survived the industry down turn because our supporters were lifelong supporters.
I have to say, today I’m scared.
When you are riding on the wings of a ghost year after year, you begin to have moments where you think your message is falling on deaf ears. In years past, it seemed easier for me to rally the troops. But this year I feel like something changed. I sit back and watch social media and see these people on the Dream Team posting pages after they have gotten up on a Saturday morning while everyone in the world is snug in their bed. I see them fighting mentally to run in the heat and humidity, up hills – putting in mileage they never dreamed they could accomplish. Only to finish with their body’s aching, limping to their cars. They go home and push out their proud morning to their supporters and often times get no donations to support them. We have runners that show up every morning, to save kids they don’t even know – someone else’s kids – and have trouble receiving $500 in donations over a period of 6 months of training. How is that possible? I worry I have somehow let these people down by not providing them with a child they can fight for. Am I not supplying content that is meaningful that will make their supporters understand how important this is?
I watch us work all year towards a race that is dragging in numbers. I have to tell myself that people always sign up late, but we all watch as excuses come in about why someone can’t attend. Soccer games, vacations, family in town, and a party the night before (possible hangover)… the list goes on and on. It’s so hard for me to hear the excuses when I watch my team work tirelessly to make the day so amazing for everyone. I want the entire city to show up and appreciate all they have done.
I think it’s hard because I watched Isabella walk Time Warner Cable arena, on a beautiful day when all her friends were playing, to collect money for the Ronald McDonald House, or bake cookies for families or give her toys away. No matter what she had going on – she knew what was important and made the time for it. Stuart always said that by watching Isabella, you always realize the things you really thought were important – really aren’t. She always got it. I love those that get it. I love seeing people that have been there year over year – no matter what their Saturday looks like. I love when I see people at the race who come with their company that is in for the weekend. I love people like the Gold family who are currently fighting neuroblastoma themselves, who can’t come to the race because they are taking their family to Disney. (Talk about a good excuse!) Instead they created a team and are constantly recruiting people to come to the race under their team name. They created a FirstGiving page and have raised over $3,000. Just today their family was here picking up our ISF tent to hold a lemonade stand on a Saturday night to raise money for a cure that might help their own daughter. They get it.
I wish I knew how to motivate others into action like I once did so easily. I wish the Dream Team was being rewarded for the 8 miles they ran for other people’s children this morning, and again and again when they ask for your support. I hope my ISF team feels a huge sense of accomplishment when they see the waves of purple 2 weeks from today. I hope everyone who supports ISF feels proud when we are able to send funds to advance treatment is Isabella’s name. I wish Isabella were here so you all had someone to save who you could see that morning. But she isn’t here because for years, these pleas have fallen on deaf ears and her death was the consequence of silence.
My hope is that instead of liking a page, sharing a post or being aware of her passing – you make the change to do something about it. These kids all need us to change from awareness to action. The clock is ticking.
Sign up for the race. Be a Phantom Runner. Create a Team. Create a FirstGiving Page. Support a FirstGiving Page. Just do something.
By: 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.