Cancer Stole My Sister

Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

– Grant Santos, Isabella’s Brother

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It started with a girl. And she is changing the world. June 28th will mark the 6th anniversary of Isabella’s passing. Please help us near and far keep Isabella’s legacy alive.
 
– Make a donation: donateisf.org
– Participate in our Sept 5K/10K: 5kforkidscancer.com
– Sign up as a MIBG Ambassador: https://bit.ly/2MsUQdm
– Sign up for Isabella’s Dream team: https://bit.ly/2smlhqh
– Participate in our CBCC platelet drive June 21-28: https://bit.ly/2sVjafX

Things we hate to do, but still need to be done

Written by Erin Santos, Isabella’s Mom

I get it.  It’s not a fun thing to do.  You may drive all the way to the center and get turned away.  It’s cold in there.  It may take them a couple of tries to find a good vein.  You are worried you might pass out.  It might be uncomfortable for a while.  It’s boring.  It may take a little longer than you want it to.  I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could.  But, like you all – I get busy or some of these excuses start ringing in my head.  I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive.  Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much.  It’s like voting for me.  I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours.  It’s like a battle scar that somehow says, “I care”.

Platelets.   For some reason this process is a whole new ball game.  I don’t give them as much as I should.  I’m just lazy about it really.  I’m very particular about my platelet giving.  It is a must to have someone with me to entertain me for 90 minutes.  I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations.  The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th.  I figured that if I was going to do this in her honor, let’s really do it.  The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently.  I sat in my chair and watched seas of purple come in and out.  Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die.  My brother came in during that time and sat with me.  I think he gave blood instead of platelets that morning but all I really remember was him being with me.  He was there with me on the day we found out she had cancer, up until the day she died in our house.  He is a quiet brother at times but his presence is heavy.  We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing.  He knew how hard it was for me as I sat there and sobbed.  He just sat there – understanding how the things we hate to do, still need to be done.  This is not where I wanted to be on this morning and he knew it.  He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair.  But once again, I was doing something, not for myself, but for her.  It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura.  He let me be a part of a huge day in his life, maybe because I let him be a part of mine.  We went to lunch and had a drink and laughed.  By then my tears were dried up and I had focused on the excitement of his day.  He was starting a new chapter and I got to be there for it.  It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat.  I have gotten a little smarter and try to no longer go during that hour of her passing.  It’s just not a smart thing for me to do anymore.  But I still go.  I go because I know how important blood and platelets were to her survival.  I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily.  I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere.  She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her.  Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do.  I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.  Our goal is a 100 donations.

– DATES: Thursday, June 21st – Thursday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us

What is your Why?

In the fundraising and nonprofit world we all have our own WHY for WHAT we do.  We talk about WHAT our charity is about and WHAT we do to fight… but connecting that WHY is the difference when trying to make a connection in fundraising.  The WHY is the goosebumps and tears that move donors to action.

Our ISF team talked several weeks ago that we wanted to ask our Dream Team and our MIBG Ambassadors this one question:  WHY do you fundraise for the Isabella Santos Foundation and pediatric cancer. It’s a question taken from Simon Sinek’s book and TEDx Talk, ‘Start With Why’… aimed at inspirational leadership.  For us at ISF, Sinek’s thoughts our perfect for fundraisers too.

Tim & Granddaughter

The funny thing is we haven’t asked this question to our fundraisers yet… but our faithful and consistent supporter, Tim McBride, shared his WHY this weekend.  We all have them.  Some very specific like Tim’s.  Some maybe not so specific.  But the WHY is what means the most.  

Tim, your WHY stopped us in our tracks.  It gave us goosebumps.  We thank you for using your pain to make a difference in this world…

“People are always asking me why I’m so passionate about raising money for cancer research, treatment, and patient services. I have many but this started it off. I always thought (and still do) that my brother, Mike McBride, was the greatest athlete in the world. When I was young, Mike, my Dad, and I would watch pro football on Sunday afternoon. I remember my Dad saying he would see Mike play on Sunday too. I wanted him to think I was good too. When I was 8 years old, I entered a Punt Pass and Kick contest and was fortunate enough to win my age group. I walked home with my Redskins jacket I won for first place. I went to show my Dad so he would say I could play in the pros like Mike. But cancer was doing its job on him. He had a brain tumor and this wasn’t a good day for him. After I told him I won and showed him my jacket, he just laid there in the bed. As I was leaving, I heard him ask Mom, “who was that?” I have never forgotten that day. I knew I was never good enough to play on Sunday but that pain has driven me to want to raise money so a kid never has to feel the pain I did that day.” 

-Tim McBride [McBeast, ISF MIBG Ambassador, Dream Team Member, Run-Streaker, Cancer Crusher, Santa Clause, & all over Bad Ass]

WHAT IS YOUR WHY?

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It started with a girl.  And she is changing the world.  June 28th will mark the 6th anniversary of Isabella’s passing.  Please help us near and far keep Isabella’s legacy alive.  

Lake Norman Forest Run Benefiting the Isabella Santos Foundation

LAKE NORMAN FOREST RUN  |  HALF MARATHON & 5K  |  JULY 28, 2018  |  7:00AM- 11:00AM

Excited to add this to our partner event list! Announcing the Lake Norman Forest Run on July 28th benefiting the Isabella Santos Foundation, race 1 of the Lake Norman Half Marathon series by Epic Sports Marketing. Mostly in the shade on the well paved roads of Lake Norman State Park, this run has a half marathon and a 5K option.

Details – http://www.lakenormanforestrun.com
Register – http://tinyurl.com/yb4rpz5p

The Sound of a Train at Night

Written by Erin Santos, Isabella’s Mom

It’s June.  Let’s just acknowledge it.  

Different months mean different things to us here at ISF.  Some months mean big events – and even bigger anxiety – like our September race or our spring coffees.  Other months are spent answering emails, scheduling meetings, honoring appearances, or trying to navigate the demands of the foundation. June is always different, though,  because we never really know what this month will bring.

For me, June always begins as a crazy whirlwind of  “Oh God, it’s the end of school”, as I frantically try to present myself as Mom of the Year until the day the kids exit the bus for the last time.  This particular June has been abnormally crazy, with the addition of a desperate search for Jake, Isabella’s cat who left one night after a work meeting at my house.  Jake – an inside/outside cat who loves to party at night – would always be waiting at the back door each morning to come in for cuddles. Three weeks ago, he went to party and never came back.  We are all in denial that he is gone. His food bowl is still sitting out in our house, full. The kids are devastated and I’m blocking out all the emotion that comes with how we got this cat, what this cat meant to her, and what this stupid cat means to me.  Sophia says he is finally with Isabella again but I just laugh it off because I can’t wrap my head around that.

Last week, I found myself in Mom of the Year mode again and took my kids to a Knight’s Game uptown mid-week. Grant was so exhausted, he completely fell asleep on me for an hour at the ballpark and I realized instantly that I overbooked us. As I drove us home later in the dark, I decided to take a better exit with more lighting.  Then it happened… we were hit from behind and smashed into a 5-car pile up. Surprisingly, we all walked away from a totaled car without a scratch on us. The truck that hit us from behind practically came through my backseat where Sophia was sitting. But other than a weeklong headache and a car that was being sold for parts – it was as if it never happened.  Grant graduated elementary school the next morning and I sat there, not allowing myself to think how different that morning could have been if we hadn’t been wearing seatbelts or if the teenager hit us at a different angle. In traditional Erin fashion, I pushed all those thoughts aside. It’s just another crazy June, just another thing.   

But there have also been things that have happened that I can’t push aside. A few nights ago was no exception.  I was asleep in a dark room when I heard it – the sound of a train passing closely by. I’ve heard this noise many times before. Generally, it just startles the shit out of me before I fall back asleep.  But this time the sound instantly conjured up a hundred images in my mind as if I’m living in a movie. And it suddenly launched me back to 6 years ago. Into a pitch-dark room. With her.

We were at the Grand Floridian because Mom of the Year thought it was smart to take a severely sick, dying child to Disney World.  She was skin and bones at this point and was losing her vision due to the brain tumor. So each day as our group headed out to take Grant and Sophia to the parks, I would pull the dark shades and crawl in bed next to her.  The hotel was silent because everyone was where they were supposed to be… out enjoying themselves and the sunshine. But she and I would just lie there, silently breathing together. The only sound we would hear was the monorail train coming in and out of Magic Kingdom every 15 minutes.  The room was so dark we couldn’t see each other but I could feel her against me. I would never sleep because I was too busy taking all of her in. Every breath, every twitch, every single train that would come and go. Hours would pass and I would just cry silently – trying hard not to wake her.   And just when I would feel my mind becoming tired enough to sleep, the train would come.

Ever since that June night just a few sleeps ago, the one that brought back Disney, I realized something different is happening. I’m remembering more. I don’t think it’s that I necessarily want to, but somehow these thoughts are elbowing their way in . Maybe it’s because I’m home alone and my mind has time.  Maybe it’s the combination of the cat, or the the car accident, and the silence in the house. All I know is that this stupid train has me thinking again and it’s tough. How can one sound do that to you? One simple, normal sound.

Since I’m finding I can’t push these thoughts aside, the only decision I can make is to take it all in over the next two weeks. To allow this train to throw me into memories I don’t want to have. Unless I somehow muster up the strength to realize it’s just a train. And move on.

Welcome to my June.

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It started with a girl.  And she is changing the world.  June 28th will mark the 6th anniversary of Isabella’s passing.  Please help us near and far keep Isabella’s legacy alive.  

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