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10 Year Old Boys

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.


The Best Decision I Ever Made

The Best Decision I Ever Made

By: Erin Santos

It was one of the best decisions I ever made, but one of the hardest. We had just had our first Christmas without her. She was only gone 6 months. At this point I was visiting her every Wednesday and it wasn’t pretty. I kept thinking of all the things I was going to do with my life without cancer. I was finally going to do all the things I was never able to do. I was finally going to take the Foundation by the reins and turn this little project into something. But I couldn’t do it.

I spent the entire day of that first September race, after she passed away, hiding out. I couldn’t talk to people, but everyone wanted to talk to me. I would just stand uncomfortably in front of people, thanking them with tears rolling down my face. I would sit at home and see the emails coming in from people who were heartbroken by our situation and just wanted to offer their condolences, but I couldn’t respond. I was looking at all that we had built over the years and I was staring at a crossroads. For the first time in my life, I wasn’t strong enoug

This was it. This was the moment they all talk about.

  1. Divorce
  2. Have a baby
  3. Move

None of them were an option for me. I was only looking at one viable option to survive. I had to hire someone.

When an organization is built on volunteers, it’s hard to make the jump to hire someone. You think supporters will treat you differently, like you are somehow no longer what you say you are. The mission is the most important thing and anything that takes away from that feels like you are doing your supporters wrong. But, we just couldn’t do it anymore. All I wanted to do was run from it, but I could feel her hand in my back pushing me to continue.

It was a Wednesday. Why I chose to schedule an interview on a Wednesday morning after my cemetery visit is beyond me, looking back. I asked my head of Marketing, Rachel Wood, to join me. I had never hired anyone before so I wasn’t sure what to ask. I wanted us to seem professional, like we had our shit together.

I arrived a couple of minutes early to grab a coffee and compose myself. I had of course been crying that morning after visiting her on a cold January morning. January in a cemetery is always depressing, cold and dead. There she was… early. Little did I know that for the next three years she would always be the one who was early. Always saving me from being late. I walk up looking like I just had the shit beat out of me. I’m sure she thought, “Good Lord woman… you are not ready to be in public,” but there I was, a mess.

She was of course gracious and sympathetic and as professional as she is today.   Rachel arrived a few minutes later – glancing at me and realizing that I was in no shape for this interview. But, what was she to say to me. She just smiled and gave me a hug. Thankfully Rachel ran most of the interview for me, asking all the right questions. The woman across the table had no real non-profit experience to speak of but was looking for something in her life that was missing. She had followed the story and seemed passionate to help. There was no real social media or fundraising experience either, just something about her that made me feel like I was home.

The interview ended and we waited to discuss our options until we conducted a few more interviews that morning. But without even speaking, we knew she was it. We tried to Google her, we tried to dig up her dirt – nothing could be found. Everyone who spoke of her, spoke of her highly. So we went for it on our gut… and we hired Maitland.

Maitland had never met Isabella once.isabella_santos_foundation_maitland_danner What we asked of her was all over the board. I needed someone to be the first line of defense on ISF. I couldn’t be so reachable. I needed to get things organized and scheduled. I needed her to learn our social media because I couldn’t post pictures of Isabella every day. The things we asked of her were so random and new to her, but she took it all on with a smile. The pay was embarrassing. It was hard for me to look at her, knowing that we were paying her so little. She would submit hours each month that I knew were a fraction of the hours she was actually working. She hated that we paid her, even if it wasn’t much. It was so uncomfortable for us both.

Maitland is where everything changed. I found myself coming out of my dark hole and being excited to work alongside her. It brought me comfort knowing that on the days when I just couldn’t, she could. I felt like we could conquer the world together because she had the professionalism and demeanor that I lacked. We were the yin and yang to ISF and it just made sense. I had never worked so well with someone in my life.

For 2 years she and I worked together, and with the help of countless volunteers and an amazing Board of Directors we took ISF to the next level. She began to know me and take care of me. She would step in when she knew I was about to break or make me wait in the hall when our video was showing, even if I told her I was strong enough to watch. She knew all the days it hurt, and especially the ones that hurt really bad. She answered questions that I couldn’t and kept some of the crazy people away from me. Maitland was my protector and with her working alongside me I was able to heal. I honestly feel like I would have shut down ISF had I not brought her on. She was a gift to me.

Our buckets were constantly full. But like most buckets they overflow and you realize that it’s once again time to expand. The Foundation was growing and the hit to our bottom line for one employee paid for itself ten times over. We began to pass on opportunities because we didn’t have time devote to them. I knew that she would take on more and more but I didn’t want to do that to her. It was time for a talk with the Board.

isabella_santos_foundation_andrea_issacDre volunteered like no other. This poor girl offered to help with an auction that pretty much swallowed her whole over the summer. I wanted her to come on board because she had more traits that I lacked. She was like a dog on a bone when it came to things. She had no fear of asking people to help, donate or volunteer. I on the other hand could barely ask close family to help. Her organization skills put everyone I know to shame and she had a heart of gold. I knew she was nervous about coming on board because we had a friendship. Friendship is more important than a silly job and I promised it wouldn’t get in the way. She finally accepted our sad sad offer and we were a party of three. ISF grew to new levels once again.

Each time I feel us sinking, we all begin to give each other that look. There are so many hours in the day and we don’t want to fail. If we could clone ourselves we would, but instead we stick our toe in the water once more and bring on someone to carry the weight. Karen came on earlier this year just as we started to go under water. The ability to have someone devoted to things that we couldn’t even comprehend having the time to investigate, just makes us that much stronger.

isabella_santos_foundation_karen_murphySo here I sit, with my three women that are truly the hardest working women I have ever met in my entire life. They text me before my eyes are open in the morning and are still texting as I close my eyes at night. They work on vacations, holidays, family time – you name it. They are the most overworked, under paid group of people you will ever meet, but they love it. And I love it.

They always say that when you find the job of your dreams, the compensation, the benefits, and the bonuses – all that doesn’t matter anymore. I always thought this was a load of crap. But now that I’m in the job of my dreams, I couldn’t agree more. These women are my family and what they give to the Foundation is immeasurable. We would not be here today without them and they are a gift to me every day. Because I care about them so much, I also know what I can’t put on their shoulders. I am careful not to break them because I love them and I have to work with them every day.

0_7105So when I tell them our goal in 2017 is to raise 1 million dollars in one year, I feel their stomachs drop. I know we are all stretched thin and we feel that our current Rolodex is already tapped. I don’t know how we are going to do it, but I know that we can. They tell me we will do it, not because they get some big bonus at the end of the year if we hit it, they want to hit it because this thing we are doing means something so much to them too. Sure, they will get a big thank you note from me and their favorite bottle of wine at the end of the year like they always have –but their biggest gift is just a sense of accomplishment and a hug.

The gift I want to give them this year is help. I know we can use the money you give us for Neuroblastoma research to bring on another employee, but we don’t want to. We always want to stay true to the mission we tell you. Instead, I’m asking today for you to give because you believe in us. You believe that by bringing on one extra, hardworking person like the ones we have – we will be able to hit 1 million dollars raised next year. Each person we have brought on has brought this Foundation to a whole new level and I have no doubt this will do the same.

I can’t ask anymore from my team because they are already giving more than they have ever given. I know they can leave me tomorrow and make 2-3 times their salaries because they are worth it. But instead they stay because Isabella has become their daughter too. I couldn’t ask for anything more in my girls.

Thanks to these women, countless volunteers, an incredible Dream Team Coach, and an amazing Board of Directors, we are doing amazing things here. I never would have imagined where we would be today, and it’s exciting to think of where we will be tomorrow.isabella_santos_foundation_our_team

1 million dollars. We can do it, but we need your help.

The Isabella Santos Foundation has set a goal of raising $25,000 during this season of giving to support the organization’s growth strategies during its 10th anniversary year in 2017. Your support will help us get our message of hope to more people than ever before, generating much needed resources for research to eradicate childhood cancers.

Donate now by visiting our giving page.

Beat Cancer. Grow ISF. Live OUR dreams.





NYC Marathon…Complete

By Guest Blogger: Juliane Kilcoyne

14980766_1817569965125618_3876937334617891792_n-1I knew it was coming. I trained hard for it. But nothing could prepare me for the overwhelming emotions that came with running the NYC Marathon in Isabella’s honor last weekend.

Thousands of us poured into Whitehall Station on the tip of Manhattan early Sunday morning to board the ferries that would take us to Staten Island. My nerves were a mess, the crowds were huge and the lines for the bathroom where 100 people long. All the runners were friendly, sharing marathon stories, cheering, singing songs from their home countries – terminal was bursting with excitement. I was so thankful that I was able to meet up with my teammate Brian and go thru the rest of the journey to the starting line with him. There was something so comforting about being with a friend when surrounded by 50,000 strangers.

On the Ferry, most runners were quiet, enjoying the time to sit and rest while looking out at the Hudson River and Lady Liberty waving us on. It was only when we arrived in Staten Island that the chaos ensued. The terminal was packed, the lines were insane and no one was moving! A shuttle transfer that should have taken 15 minutes ended up taking over an hour and a half. We finally arrived to the starting village, went thru security and headed to our corral only to find that it had already closed and we couldn’t run in our scheduled start time. Our start was delayed 20 minutes, just enough time for me to get my music and apps setup and send a quick text to friends and family so they knew I’d be starting late.

We moved to our start on the lower level of the Verrazano Bridge. The National Anthem echoed thru the crowd and the blast of the cannon signaled the start of our race. Our starting pace was slow because the crowds were so thick. I knew it was great to start conservative in order to finish strong, but it also gave me another advantage. I spent the first mile and a half of the race on the left side of the bridge, looking out at the New York City Skyline and the Freedom Tower welcoming us to the five boroughs.14937228_1817570055125609_931480304993865529_n

I saw my best friend and her family in Brooklyn. They were standing out in the cold, wearing shirts that said “Team Juls”. I slowed down just enough to give them high fives and tell them that I loved them. Those 15 seconds with them carried me through Brooklyn.14955799_1817569991792282_8361816185444853403_n

There were street parties, crazy signs, marching bands and children lining the streets. Church choirs sang on the steps of cathedrals and reggae bands had the runners and spectators grooving. I got more high-fives that day than I had in my entire life. Each one have me a small burst of energy, each one made my heart grow a little more. What I wasn’t prepared for was that people would read my shirt and cheer for Isabella. Within the first 5 miles of the run, I heard of TWENTY people yell “Run for Isabella” or “Go Isabella’s Team” (after that I stopped counting, it was just too many!). They don’t know me. They don’t know the Santos family. But they sent such good vibes and energy. They cheered for the sweet girl I had pinned next to my heart.

Throughout the race, words of encouragement were not only found on the streets of New York, but they were ringing in my ear. Coach Tom had told us about an app that allows supporters to send messages along the route. I heard 28 messages that day. Some made me smile, some made me cry and some made me laugh so hard even New Yorkers looked at me like I was crazy!! Hearing from my friends and family on the journey made me feel like they were all there with me.

After 23 long but exciting miles, I made my way over the final bridge that took us from The Bronx into Manhattan. It’s usually by this mile of a marathon when I hit “The Wall”. This time, it didn’t happen. I felt powerful and invigorated by the crowds – I ran down 5th Avenue feeling strong. At one point we came to a fire station. They had taken their truck to the edge of the sidewalk, extended the ladder over 5th Avenue and hung American flags from it. The firefighters were lined up next to their truck cheering and giving encouragement. It was a powerful moment and just what everyone needed as we made our final turn into Central Park.

The park was lined with spectators and filled with hills. It was as if I didn’t feel the hills, all I heard were the cheers. As I rounded the corner and the finish line was in sight, a woman on the sidewalk yelled “Take Isabella to the Finish Line!” and I’m proud to say that’s just what I did.

I Am Only One, But I Am ONE

By Guest Blogger: Crystal Squires

screen-shot-2016-10-14-at-7-48-17-amAfter 16 weeks of training, countless mornings of early alarms and hundreds and hundreds of miles run … I did it. I completed the Chicago Marathon. This wasn’t my first, wasn’t my last (although I do love to throw around the word “retirement”), wasn’t my best, wasn’t my worst … but there is something extra special when you run across that finish line knowing that you did so not just for yourself, but for something much bigger.

I’ve fundraised before with a group similar to The Dream Team … a group of incredibly motivated people that are committed to doing something to better the world. It’s definitely easier to do when you are physically part of that group (rather than virtually). It’s easier to see the impact that you make when you are one standing within the group rather than one standing alone from afar. I thought of this often as I ran through the streets of Chicago with 45,000 other people. I thought of the pictures that I’ve seen on the Dream Team group page of the huge gatherings of people … the enormous sea of purple that would fill the streets. I thought of the impact that would make within a race like this … how much more noticeable that sea of purple would be over just one lonely purple person proudly sporting her cause across her chest amongst the so many other charity runners sporting their causes as well. I started to wonder if people would even notice me … even notice the cause. Not for the recognition, but for the sake of spreading the word about pediatric cancer and the desperate need for funding. I knew I was part of the sea, but it was hard to see the sea in that moment.screen-shot-2016-10-14-at-7-48-43-am screen-shot-2016-10-14-at-7-49-15-am

Then the focus shifted. Perhaps not EVERYONE in Chicago noticed our cause, but people DID notice. I got shout outs several times along the course. “Go Isabella’s Dream Team! Keep it up purple!” I may not have been noticed by all 45,000 people running or every one of the thousands that lined the streets … but I was noticed by some. Perhaps one of those people got online later that day and looked up Isabella’s story. Perhaps one forgot the name but remembered something about childhood cancer and takes notice the next time an opportunity to help comes along. Perhaps one person chose to do a little more digging and became aware that pediatric cancer only receives 4% of federal funding, came to the realization that 4% was complete bullsh*t and then decided to take some action. Whatever impact you make .. whether it be to one person or many … reaching but one person means you’re making a difference.

“I am only one, but I am ONE. I cannot do everything, but I can do SOMETHING. And I will not let what I cannot do interfere with what I CAN DO.” ~Edward Everett Hale

So, thank you, Dream Team, for allowing me to be a part of your SOMETHING. For inspiring and motivating me along the way … even from hundreds of miles away. Thanks for welcoming me into your sea of purple.

This past Sunday afternoon I crossed the finish line of the Chicago Marathon. And I did so for a reason greater than myself. I did so to make a difference. I did so to raise money for pediatric cancer. I did so as a member of The Dream Team.

I did so for Isabella.screen-shot-2016-10-14-at-7-49-42-am