Tag Archive for: pediatric cancer fundraising

Charlotte Community Comes Together to Bring $141,141 IMPACT for Pediatric Cancer

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WHAT LEGACY WILL YOU LEAVE?  WHAT IMPACT WILL YOU MAKE? HOW WILL YOU INSPIRE CHANGE?

Event Photos courtesy of Stikeleather Photography

Our 3rd Annual Coffee for a Cure Events last month were all about creating hope.  Hope for more pediatric cancer options.  Hope for new research.  Hope for families and children fighting this ugly disease.  Over two mornings, we talked about IMPACT, INSPIRATION and LEGACY and how we all can do our part to make things happen.  We are very excited to announce that we raised $141,141 over the course of the two mornings with donations still coming in!

The second week of April was a BIG week for the foundation!  Coffee for a Cure came directly on the heels of announcing our $5 million commitment to Levine Children’s Hospital to establish The Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital.  This program will impact more than just Charlotte as it will be the first of its kind in the United States.  With this $5 million 5-year initiative, we hope to change lives.  We will be the foundation of something special and will have the best pediatric cancer program, right here is Charlotte.  It will take years of fundraising and years of building… but we hope you will join us in this important mission.

Ten years have passed, and we have seen lots of changes in the Isabella Santos Foundation and we are excited for what the future will bring.  The momentum is strong, the focus is broadening, and the mission to help is growing.  Three extremely proud accomplishments include:  1). Over $1 Million raised in 2017  2).  MIBG Suite is in process and to be unveiled Dec 2018 3). Isabella Santos Foundation has DONATED over $2.5 Million to date.  And we could never have made those accomplishments without every single donor, supporter, volunteer or team member.

We also couldn’t have accomplished such milestones without community leaders advocating for pediatric cancer and our foundation.  We are very proud to have some of the best community leaders on our side.  Joining us for another year as our event emcee, Molly Grantham of WBTV has been with us since the beginning and continues to support our foundation’s mission at every turn (and lately there has been a lot of them).  We thank Molly for her constant support and the IMPACT she is making and INSPIRATION she is creating through her #MollysKids work.

During our annual Coffee for a Cure events we look forward to recognizing individuals in our community with the 6th Annual Isabella Santos Award.  Congratulations to Tim McBride, Tom Patania, and Christie Keagy.  Each one of these individuals has made a difference to those around them and continue to do so. They are out to make an impact and inspire change. And we love that they impact and inspire in their own way.  We thank them for the kind individuals they are, the admirable characteristics they embody and all that they have done for the fight against childhood cancer.

To everyone who supports us…we cannot begin to put into words to how grateful that we are for the impact you are helping us make. We are so proud of what we have accomplished together and it is because of YOU.  We hope you will continue to join us.  We are fortunate to live a community that stands behind us.  Thank you to the following businesses who support our mission of fighting childhood cancer and helped us make the 2018 Coffee for a Cure Events possible. 

Event Photos courtesy of Stikeleather Photography

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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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Why I Regret It

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

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Why I regret it…

How do you make a decision on remains? How do you make a decision on a child’s remains? Questions like these are horrible and they are ones I never thought I would be making at the age of 35. The truth is, there is no right decision. I think that I made the decision based off what I wanted for myself. I had to think that when I’m gone, I’m gone. Light me up, put me in some box (hopefully a decent looking one), and take me to a beautiful place. Let the wind carry my ashes and scatter me somewhere I love. I don’t want to be put in a box in the ground and decay with the bugs. I especially don’t want to be put in some marble kitchen counter top looking apartment home for ashes. Creep. Out.

But when it’s your child, you just can’t do that.

There is no discussion with them on what their wishes are. Their only wish is not to die. They can’t grasp the concept that someone is doing something with you when you die. To them, people are just gone. Grant and Sophia still don’t really know what is going on behind that name plate when we visit her. Lots of questions like, “How did she get in there?” or “Who are all these people with her?” “How can they all fit in there?” Sophia still tries to peer into the holes and walks around it like it’s some magician’s table that has a trap door somewhere. Eventually we are going to have a horrible discussion with them on what actually happened. I don’t think it’s going to be pretty. I can’t imagine they are going to be comfortable with what we decided, and it may truthfully scare the shit out of them – or even worse – they’ll hate us for it.

I’m not really sure if we had another good option. I just could NOT pick out a casket. So much of that seems worse. Maybe it was all those years of watching Six Feet Under on HBO that wigged me out about the whole death process. Or those horror movies about people being buried alive. People have nightmares about that, right? Although I have to say that watching someone get burned alive on Game of Thrones makes me want to sob like a baby. Why did I do that to her?

Sometimes I miss her so much that I think about taking her box from the Calvary cemetery and hiding it in my house; just so I know she is here with us. I wouldn’t tell my family, it would be my little secret. Jesus, I sound like a nutcase. I really only thought about this once last Christmas, and I eventually would have put her back…I think.

By cremating her, I have lost the chance to ever lay with her. But really, what am I going to do? Bring a blanket and pillow out there? Do I think I’m going to bring a picnic lunch and sit out there on top of where she is? This is the really sick shit that goes through my mind sometimes! At least I would know that she was under me though. For some reason that brings me comfort.

I felt like I knew the right thing to do, so that is what we did…and now I regret it. Somehow I feel like if we chose the other path, we would have regretted that too. Point of the story is there is probably no right way to handle a child’s death. Her entire journey was a series of split second decisions you have to make and then deal with the repercussions of it your entire life.

I wish I could have been making other decisions like what color to paint my kitchen, or if I should check out that new Meryl Streep movie or wait till it comes out on RedBox. Instead, I’m in my 30s and deciding on how to ultimately end a child’s existence. That is some F’d up shit right there.

-Isabella’s mommy

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Why I Ask

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

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Why I ask.

A couple of weeks ago, I was enjoying a casual dinner with friends. We were eating our weight in chips and salsa and conversation turned to ISF, as it usually does. We started a conversation about a new concept I was trying out on Facebook to help raise money. It’s a simple idea based off our #isftagteam concept.  Each day I ask 5 people to support children’s cancer research by tagging them on Facebook.  It’s just a simple tag, asking you to take a minute and give to the cause of children who DIE from cancer. I don’t make you pour buckets of ice on yourself, you don’t have to do some silly dance or even do a single push-up – and you don’t have to tag others to do the same. You just have to support children’s cancer research.  Make a donation of $5 or make a donation of $500.  I don’t care what you donate – just support it.

I got pushback from my dinner companions for this concept immediately.  “People don’t want to be called out publicly”, “You can get away with doing something like that, but I would never do it.” I kept explaining that I didn’t really think it was offensive.   If someone directly asked me to give to something they really believed in, I would give. But, the looks on their faces told me that it was too “in your face”. Even though the conversation changed topics, I kept bringing it back to the simple question of whether or not I’m offending people by asking them publicly to support something that means everything to me. I couldn’t swing their opinion.

So I stopped doing it.  My goal wasn’t to upset anyone or push them to give when they didn’t want to. That was 2 weeks ago.

I hated that I stopped.

The more I thought about it, the more I realized something. I don’t give a F*ck if it makes people uncomfortable.

There, I said it.

Do you know why it killed her?  Because people are too nervous to ask someone to donate.

Not anymore.  So I’m sticking to my guns here.  Guess what, if I ask you – you don’t have to give and it won’t make me hate you.  But if you do give, it will make me love you.  It will make me love you because you get it.  You understand that nothing will be done unless something is done.  Someone once told me, “You know… I would give to ISF more if someone just asked me to do it.  But lots of times no one asks, so I forget and I don’t donate.”  I about choked when I heard that from someone recently.

So I’m making it my mission to just ask.  No harm in asking.  Things can only change if people take action and MAKE them change.  My goal isn’t to put you on the spot.  But sometimes you do things when you are on the spot.  And I’m hoping that what you do when you are on the spot will bring change and save lives.

Let’s do this.  Prepare to be tagged.

#ISFtagteam

Erin Santos, President of the Isabella Santos Foundation and Isabella’s Mommy

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Isabella Race Picture

Why I run…

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Written by Erin Santos, President of The Isabella Santos Foundation

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.

http://www.firstgiving.com/fundraiser/isabellasantos/8th-annual-5k10k-for-kids-cancer

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