Tag Archive for: pediatric cancer awareness

Why I Stopped

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation
Day 2 QuoteDay 2…Why I stopped
When we finally placed her ashes up at Calvary, I found myself there every Wednesday. I would drop off Sophia and take 30 minutes to sit out there with her. The visit was filled with mostly crying and lots of anger. It became something that I scheduled things around because I wasn’t used to being away from her for these long periods of time. I still needed to be with her.

As time passed and the weather changed, I found myself missing a Wednesday or two. Guilt would plague me all day until I would find myself pulling up to her spot, even if it was inconvenient, because nothing in my life should have been more important than her. I became a cemetery grounds keeper as I took it upon myself to keep everyone’s site around her on the up and up. Watering flowers, adjusting sentimental pieces that had fallen in the rain and even chatting briefly to the people that surrounded her. I remember thinking how sad it was that I never saw anyone visiting them at the cemetery. All these people out here and I was the only caretaker. Here I was, a 35-year-old cemetery grounds keeper. Felt like an odd way to deal with a death.

Time began to pass and the summer came. I was no longer dropping Sophia at Calvary so I let myself take a break from her. I would stop out occasionally but when I did, the visit turned into something else. My visits became more about self-reflection, guilt, anger and resentment. I was no longer enjoying the visits. I would sit with my back to her and I would rest my head back on her nameplate. My mind would spin of all the things I had done since I last visited her that she would not be proud of.
Why do I live my life this way? I’m a better person than this. Do I drink too much? Am I giving enough attention to Grant and Sophia? Am I good friend? Should I be calling my Mom more?

My regular visits didn’t hold these questions when I was there with her because I was there so often. Not much had happened since I was there last so it wasn’t about catching her up with my life. It was just about being together again.
But time between visits brought up a range of emotions for me.
When you have a belief that when people die they are still, in a way, around you – for some it can be comforting. But for me, it was scaring the shit out of me. Is she watching me lay in bed all day? Is she watching me yell at the kids? Is she seeing Stuart and I fighting and saying horrible things to each other? It really messes with your head to think that your 7-year-old daughter could potentially be watching you make all these mistakes in your life. I found myself sitting with her and apologizing for all the things I had done wrong since last time I saw her.

I would leave feeling like crap about myself so I had to stop visiting her.

It has even changed my thoughts on what happens after we die. I’m now choosing to not believe that our loved ones are still with us, guiding and steering us in our lives. They are just gone. She is not watching my every move and constantly being disappointed in the choices I’m making. I have to think this or I can’t live my life. I can’t apologize to her every day. I can’t sit out with her and explain myself.
I also know that I have to let go of her and by not going out there – it allows me to do that. I need to be present in my life and know that I’m doing the best I can. I can’t continue to tend to her or think that she needs me to come out there because it means something to her. She is gone. She is not keeping score and I need to remind myself of that every day.

A fear of mine is my children saying that I never got over her death. If I go out there and sit, it just reminds me of all the horrible things about her life and I can’t move on. I’m swept up in the lives of the dead people around her as I tend to them as well. It’s a sick way to spend your day when you have so much in your life that is good.
I still go occasionally. But it’s brief and sometimes cold. It has moved toward bringing her new flowers or some silly lawn ornament that I stick in the ground. I still put my hand on her name when I’m there so that she knows it’s me – but as soon as I feel the punch in the gut, I remove it quickly. It’s like a bolt of lightning that runs straight to my heart. I feel like my relationship with her is dwindling away, but maybe that is the right thing to do. I need to take a step back from the pain of her and the guilt that it brings to my life.
But it also makes me feels like I’m losing her all over again.

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Why I run…

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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We Should All Want to be Like Her

Written by Erin Santos, President of The Isabella Santos Foundation

Ib_Magnolia BakeryI saw this picture of Isabella in our new video and it stopped me in my tracks.  One of my many awesome abilities is my long and deep memory.  In the memories of Isabella, it is a a blessing and a curse.  Many of you will look at this picture and think of how happy she was.  And you would be right.  She was happy here.  She was one of the happiest children you ever met.  What you don’t see in this picture is the struggle.  This was Monday, September 19, 2011.  We were in New York City for dreaded quarterly scans.  We tried to make our time in NYC exciting for her and this day was no different.  We were given a private tour of Magnolia Bakery and private cupcake decorating party.  She brought her American Girl doll with her who also liked to decorate cupcakes.  She and her doll, Lanie proceeded to decorate cupcakes with hot pink icing and every color of sprinkle in the rainbow.

Behind the scenes she had every symptom imaginable.  Headaches, vomiting, stomach pains, dizziness and blurred vision to name a few.  I was anxiety ridden because I knew something was wrong.  I took a call during this cupcake session from a nurse who told me she was scheduling a neuro consult for Isabella the next day.  I felt sick.  I found out the next day that the cancer had spread to her brain, her bones, her bone marrow, areas in her chest and abdomen.  She was dripping in cancer.  The disease in her brain was bleeding and we should be expecting seizures any day.  We should go home, be with our family and call our home health care nurse.  This was it.  Just yesterday she was decorating cupcakes with a smile on her face.

Look at her face.  Then look at it again and tell me if you see cancer in that picture.

That’s the thing about Isabella.  She chose to dance in the rain instead of waiting for the storm to pass.  She lived every day like she was happy to be alive.  As a matter of fact, 4 days after this picture was taken – we held the 4th annual 5k for Kids Cancer and she danced and partied until the sun went down.  She lived 282 strong days after that death sentence we received.  

The longer she has been gone, the more I have gotten to know her.  I watch Sophia become obsessed with her in her daily life.  It gets scary at times to watch her be so consumed with everything in our house that is Isabella’s.  She wears HER clothes, she watches HER High School Musical Movie on HER iTouch, and listens to HER Taylor Swift CDs as she falls asleep in her bed, on HER Pillow Pets, with HER blankies.  I have to go to Isabella’s room each morning, open her door, and hear that same creak in the door that I heard for years when waking her for the hospital.  I have to go over to her bed and see a little girl in kitty pajamas, covered in pink little blankies and wake her.  But instead, this healthy little girl has hair… this time it’s Sophia.

For Sophia, Isabella has become the ultimate role model.  She sees pictures of her doing amazing things with this bright red hair and her big smile.  She sees her enjoying every minute of her life in pictures.  Sophia doesn’t know Isabella with cancer or being defeated.  People talk so positively about her with admiration.  The story of Isabella has been built up over the years so much that Sophia wants to be just like her.  I struggle with that because I want Sophia to be her own person, and then it hit me:

I want to be like her too. 

I want to leave a lasting footprint.  I want to inspire people.  I want to make a difference in the world.  I want to leave a lasting legacy and live a life that is fulfilling and rewarding.  I want to think that my time in this world was used towards a greater purpose and lives were saved because of actions I made.  I want people to see my picture and think I was truly happy and no matter what was going on in my life, I was going to fight through it and do something monumental with my day, my year, my life.

We should all want to be like her.

Her fight and her face inspire me every day and for this reason I choose to continue raising money to make a difference and do what she would be doing if she were alive today.  She would want to save her friends and make the world a better place.

They told her she was done and she wasn’t.  And I’m not done either. 

DO. SOMETHING.

Please give to this amazing cause and ask your friends to do the same:  http://www.firstgiving.com/fundraiser/isabellasantos/8th-annual-5k10k-for-kids-cancer

Register for the race: www.5kforkidscancer.com 

[youtube_video] sH3nELoFQHU [/youtube_video]

Fight Cancer. Run with us.

ISABELLE’S DREAM TEAM – 2015

By Tom Patania

On March 9th, we unveiled the details for Isabella’s Dream Team – 2015. This date was picked specifically because it would have been Isabella’s 10th birthday. Not only is she the Founder of ISF, she is the inspiration behind this team. Our focus is about Isabella, and following her dream of creating a world with “no more cancer.” We continue the fight for her and the many children that are also battling cancer.

Last year, in our inaugural year, the team was filled with passionate and selfless individuals that came together to surpass our wildest expectations. The 2014 team raised $34,000. This program continues to be a volunteer based, grassroots effort without the high overhead of a large charity.  We ask each participant to fundraise a minimum of $500 (but our hope is that each will shoot for much more than that).  What we lack in advertising dollars we make up for with heart and community.

 “Though she be but little, she is fierce.” – Shakespeare

IB in race tIn an effort to grow our team and our impact, we are recruiting runners and run/walkers that want to join our mission of helping make a little girl’s dream come true.

This year each athlete has a choice. We will be training for two races:  Rock N Roll Savannah (Nov 7th) or Thunder Road (Nov 14) half or full marathons.  With this being a volunteer effort, we ask that each participant sign up for their race of choice. Our hope is that the athletes that choose to run RnR Savannah will take part in supporting and cheering for those that are running Thunder Road, and to support our Charlotte community. The ISF10K/5K for Kids Cancer (Sept 26th) will be a part of our training program, so each team member will want to sign up for that race as well.

Official team training will start the week of July 13th and training schedules will be available for both distances. Included in the training schedule will be speed & hill workouts (Blakeney area) and Saturday long runs (various locations – early morning). I highly encourage all of you to attend as many team runs as possible.

TEAMWORK MAKES THE DREAM WORK

dream teamHow to join the team?

  • Email Coach Tom at tom@isabellasantosfoundation.com with which race and distance you’re interested in and your t-shirt size.
  • Create your First Giving fundraising page by selecting: Isabella’s Dream Team 2015
    • Be sure to make this page personal. We do not ask you to cover the difference if you cannot hit $500.  We only ask for your best effort.
  • Register for your race and distance: RnR Savannah or Thunder Road
  • Get Social: tag five friends to let your network know you’ll be running with us this summer.

 

…A Princess Superhero?

Hero: n. Someone who faces challenges bravely and lives with a smile despite problems and shortcomings.

Qualities of a Hero:   Bravery. Confidence.  Determination. Dedication. Endurance. Perseverance. Selflessness. Sacrifice. Humility.

Princess: n. A noble young lady who carries herself with poise and dignity. She is compassionate, humble and is always thinking of others.

Qualities of Princess:  Strong. Unique. Independent. Loving. Curious. Fighter. Humble. Determined.

Ariel, the iconic princess from The Little Mermaid, has long beautiful red hair and loves the color purple. She is kind to others no matter what their circumstances, and is always looking for ways to help them in any way that she can. She is determined, fun to be around and known to follow her heart.  Sound like anyone you know?

superhero_ibAriel was Isabella Santos’s favorite princess. If you knew Isabella- there is no question as to why. This was her.  Plain and simple. The description of Ariel, down to the red hair and love of purple, fit her to a tee.

As children, we grow up fantasizing about what it would be like to be characters like Spiderman, Batman, Ariel and Elsa. We grow up learning to love these iconic personas in our life and want to do everything we can to be just like them. We dress like them, talk like them and even run around with a gown, a crown, a shield and cape just to play the part. In fact, even as adults, we secretly still want to be one of them.  We want to have abilities like teleportation, invisibility, time travel and superhuman speed just to get through our everyday life. But, in reality- we are human. We can only do what we can do.

So, what if you really had to transform into one?  And we mean REALLY had to transform. It is one thing to be Superman in our childlike imagination, but when real life throws us a ball of kryptonite- we have no choice but to fight back.

But here is the interesting part. If you have ever known a child with cancer- the resemblance is uncanny.  They are the bravest people you will ever meet. They are the most determined kids you will ever know. And…when push comes to shove- they fight with superhuman strength, they love with the most selfless of hearts and they teleport to places during dark times that most adults could never comprehend.

They are the real superheroes. They are the real princesses. THEY… are the real deal.

Throughout the month of September, we want to honor these incredible kids. We want to show that although they are just like every normal kid out there- they are heroic and deserve some serious recognition. They have fought battles worthy of Thor, shown the strength of The Incredible Hulk, and had to become invisible to the outside world like The Black Widow.  Much like Cinderella, they do not let life’s circumstances keep them down and continue to keep a positive outlook. Similar to Belle, they look past the masks and see the true beauty in people within. They live their own life… in their own way…regardless of being different.

Throughout the month of September, we will honor heroes once again that are just like Isabella was and will call them “Ibby’s Heroes”. She would like that.

Some… are in the middle of the fight. They have their armor on and ready to receive potions of every kind, with great hope that the next one will be the magic one. Others… have overcome their battle, yet continue to wear their shield close, so the cancer villain cannot attack again. And then…we have our Angels. The ones we honor that have traveled to another time. They have gained their wings, become invisible to the naked eye, but fly around and protect the ones they love most.

Ibby PrincessWe want to know through the imagination of a child- “What SUPERHUMAN POWER would you use to rid the world of cancer?”  Would you shoot it with a laser fighter, zap it with hot lava, cast a spell on it…use a healing wand? Whether you prefer to live in a castle and adorn a crown of sparkly jewels or wear a mask to combat super villains- we want to know. Kids are insightful and very creative. It’s no wonder that we look to them for their innocence and their honesty. We will be using this theme in an engaging way, throughout Pediatric Cancer Awareness Month, to help bring attention to the real faces of this disease. Our hope is that through more awareness…will come more action…and will rid the world of cancer forever and give children the opportunity to live their dreams.

…And back to that one special princess known as Ariel…AKA “Isabella”?

Well, she is special. She is a metaphor of love and transformation. She epitomizes what love is and wanted so desperately to experience what she had so longed for. For Isabella, this was a life without cancer. We may not be able to do it alone, but with your help, we can fight the battle- with gloves of white, a glass slipper and a cape to match!

Now is your turn…become a superhero for a child with cancer.  Register for our 5K for Kids Cancer or donate today.