Tag Archive for: charlotte pediatric cancer foundation

Looking Back: 2nd Annual Isabella Santos Award

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Caring. Compassionate. Leader. At the end of March we will be giving away the 5th Annual Isabella Santos Award.  Each year we recognize someone in the community who lives a life with the same dreams and aspirations as Isabella and who is trying to make a difference in the world.  Help us celebrate the past winners over the next week.

2nd Annual ISF Award, Corianne Blotevogel (2014)

2nd Annual ISF Award, Corianne Blotevogel (2013)

We are convinced if Isabella didn’t pass away from Neuroblastoma… she would have grown up to be just like Corianne.  We wish these two could have met, they would have been fast friends (especially through their love of all things animals!).  Corianne has been described as a superhero disguised as an angel and through personal hardships, physical hardships and loss, she has tremendous strength and an incredible positive attitude towards life. Her motto: “it’s not about forcing happiness, it’s about not letting the sadness win.”  Corianne is always looking for fun and creative ways to fundraise for various organizations and we are honored that ISF has been one of them. Some of the many groups that she has supported in addition to The Isabella Santos Foundation are Big Brothers and Big Sisters, The American Cancer Society, Community Blood Center of the Carolinas, Headbands of Hope, St Baldricks, Coltrane Life Center, JDRF, Second Harvest Food Bank, Locks of Love and countless other Random Acts of Kindness that play out in her life on a daily basis. Corianne is the real deal and wants to make a difference for those struggling to win life’s many battles. Isabella would have loved Corianne and the many things she does to inspire and help others.

She also has been fighting her own battle with an incurable disease.  In 2008, she’d been perfectly healthy, running regularly, when she began getting sick.  Over the course of a month, she went to urgent care four times, but was only treated for her symptoms.  On the last visit they told her to go to an Emergency Room.  She ended up being found, passed out in the hospital ER parking lot, by a police officer.  Many days after being admitted, she left with a diagnosis of Type 1 Diabetes.  This is not the type of diabetes that is typically linked with being overweight and sedentary.  Type 1 Diabetes is an autoimmune condition, where the body no longer produces any or produces only very trace amounts of insulin.  It’s not yet known what causes this type of diabetes, but it’s most likely from genetics and/or a virus.  A virus is believed to have been the culprit for Corianne’s diagnosis.

Despite Corianne’s Type 1 Diabetes, she continues to push forward and train for races year after year.  In 2012, she completed a full marathon while raising funds for charity.  Since then she runs many distances and continues to train with the Isabella Santos Foundation Dream Team…. all in honor of Isabella and other kids fighting cancer.  This lady doesn’t stop.

In Corianne’s own words…  just a few of the reasons she fights so hard:

  • For Isabella and her wishes to beat cancer, grow hair and live her dreams.
  • For the girl selling chocolate bars from her hospital room to help pay for treatment.

    2nd Annual ISF Award, Corianne Blotevogel (2013)

  • For the strong girl who is now so fragile.
  • For the girl that can’t sit up or walk anymore.
  • For the girl I made smile so big, then closed the door and cried to myself.
  • For the boy who can’t see anymore.
  • For the kids stuck in sterile rooms this weekend.
  • For the kids whose hope is experimental possibility.
  • For the kids who eat their breakfast, lunch and dinner via a tube shoved up their nose.
  • For the little bald heads, hair lost little by little during the fight of their lives.
  • For the moms and dads spending days, weeks, months in the hospital begging their kids to endure just a little bit more or handle yet another procedure knowing there is now a chance they will outlive their child.
  • For the kids who went home this weekend after ringing the celebratory bell.
  • For the kids who went home with their families and the news that nothing more can be done.
  • For the kids that are now only case studies, memories, pictures on walls and names of organizations.

“Change is possible when we decide to stop just talking and start doing something about problems. Cancer is a problem. I ran today for ISF, with Isabella and the dozens of other names and faces from volunteering at the children’s hospital this year running through my head because this matters.  #nomorecancer #isabellasdreamteam #actioncreateshope”                – Corianne Blotevogel

2nd Annual ISF Award, Corianne Blotevogel (2013)

Running to Zero

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Screen Shot 2016-07-31 at 5.28.01 PM#Runningtozero

I tossed and turned in bed. I knew my mind was racing. I had this feeling a lot back in the day and I know how to fix it. I had to write. I knew that if I did my mind would settle and I could sleep. But the “new” Erin convinced myself that my anxiety was due to the Dream Team 6 mile run at 6:30 am the next day. It was just nerves that I would oversleep or worse, not be able to do the run.

My mind and body tossed from 10:30 pm – 1:30 am.

I woke at 4:30 am and I knew it wasn’t running nerves. The day before while shopping I received a call from a new friend. Her Granddaughter just received results from recent scans and the neuroblastoma was aggressive, although I not sure aggressive accurately describes it. The neuroblastoma had become deadly. Palliative care options were given due to the rapid progression of the disease.

I tried to remain calm with the news because at this point in my life, I know that Doctors are really just guessing. You learn this when you too, have been given this option several times – yet your own daughter proves them wrong and makes a comeback. These Doctors are not God and you learn this the hard way. I gave the best advice I could give.

Tell the parents to read their daughter. If she wants to fight – then fight. If she is done, they will know and then the fight will be over.

We read Isabella each time we got devastating news. Doctors said she was done but her light showed “Green” so we fought. Sometimes it seemed “Yellow”, so we would cautiously continue. But when it turned “Red” for the first and only time – we stopped. She died quickly.

But I found myself Friday night at Nordstroms, crying. Sad and Angry.

It feels like we just made our decision. It was just yesterday right? I found myself at 4:30 am counting days.

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There is no way.

I began to freak out that another mother might soon be counting.

1 is the hardest number. But oddly 1494 still feels hard. When you see that number it may seem like a lifetime ago. But for me, it feels so recent. It’s 1494 missed kisses, missed goodnights, and missed smiles. I’m sure that number can be a hard motivator for some to take action. But to me, that number is as motivating as ever. Especially during these hot summer months when every number we see kills our motivation.

99 degrees, 100% humidity, 13.1 miles, 6:30 am, $500 fundraising goals. You may begin to wonder why you are doing this to yourself?

1494. That number motivates me because it’s an awful number. And next Saturday that number will be 1501. My number will continue to grow this season and I know that everything I’m doing, every time I ask for a donation, and every mile I run in this heat is so that someone like me will not have to write that number on their arm.

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I will run and continue to ask until that number is zero.

#runningtozero

Donate. http://www.firstgiving.com/fundraiser/isabellasantos/2016-isabellas-dream-team

– Isabella’s Mommy

 

Why We Haven’t Touched It

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

Day 10
Why we haven’t touched it…

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She barely lived in it. It’s been vacant for 3 years now. I remember her helping paint the walls pink and purple stripes. The rollers were so big she could barely hold them up. She got her new white furniture with a side table, dresser and desk for all that homework that she had planned to do. Truth is, I can barely remember her sleeping in there. So many times she would end up in our bed due to sickness or if Stuart was traveling, not to mention all the nights in the hospital. If she slept in there one hundred nights I would be surprised.
But the room is all her. Her pajamas are still in the drawers, her dresses still hang in the closet and her shoes are still waiting to be worn. Her dresser is covered with pictures of her best friends, her family and “get well soon” cards from classmates. The bookshelves have her library books that I’m sure the Elementary school as decided not to ask for. Her desk is filled with drawings and notes that were never finished. There are beaded necklaces that we made in the hospital, seashells she collected, diaries with kittens on them and Taylor Swift CDs in every drawer you open. I have still not gone through it all because I’m always afraid of what I will find. Last year I found a Mother’s Day craft she made me at school just a month before she died that she never gave to me. That is when I just decided to close things up for awhile.


There are books out there for everything these days when it deals with children. “What to expect when you are expecting” was supposed to be the roadmap for pregnancy to follow. Where is the book on “What to expect when you aren’t expecting?” Where is the manual for parents on how to deal with things like this? I need a roadmap and here are some things I need to know…


1. What do I do with her clothes and when do I start to actually do something with them? Do I make her clothes into blankets and give them to people? Is that creepy?
2. What do I keep and what is junk? Do I keep everything that she ever wrote on? If I throw it away will I regret I did that?
3. How long do I keep this room going like this? Am I supposed to have a little girl’s twin bed in there forever?
4. If I make her room something else, what do I do with it? If I make it into another guest bedroom will people be wigged out sleeping in there? Feels even more disrespectful to make it into an office or something.
5. What do I do with her furniture? Is that another thing I will get rid of and then regret I got rid of it? I keep finding places on her furniture that she actually wrote her name on. Seriously?
6. Do I put her stuff in storage?
7. When do I do all of this? At what point is it okay to have her room still the same, and at what point does it become creepy? When will people start saying, “I think it’s time they did something with that room.” I definitely want to do something with it before that conversation starts happening.


All these counselors will tell you that this stuff should be done whenever you are ready. There is no timeframe that should occur. But there has got to be. There is definitely a line out there in the universe that you cross too soon or too late. It still feels too soon to me because every season I think I can tackle clothing and I just crumble. But, I know it all can’t stay like that forever. It eventually will need to be tackled, just not sure on the rules for this stuff.

-Isabella’s mommy


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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

Day 8 QuoteDay 8
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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