Committed to Improving Pediatric Cancer Care in Charlotte and Beyond

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Isabella Santos Foundation

Press Conference News coverage  |  Press Conference Video

Today we announced  the largest commitment we have ever made. We are a bit scared. Very emotional. The Isabella Santos Foundation commits  $5 million to establish The Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital.  This program will oversee care for all solid tumors, rare tumors, MIBG therapy, and all related clinical and scientific research at LCH.  We are ready to take that next step by creating a rare and special pediatric cancer program that will be the first of its kind in the United States.

We might be scared. We might be emotional.  But we feel… Energized. Hopeful. Determined. Grateful.

Our partnership with LCH will allow us to continue the legacy Isabella left.  Isabella’s motto was: Beat. Grow. Live.  “Beat cancer, grow my hair, live my dreams.”  The foundation in her name dedicates itself to broadening that, so that other kids fighting cancer may Beat (the odds), Grow (awareness), and Live (without fear).

During the LCH press conference today for the partnership announcement, Erin Santos spoke about what this day means for her personally…

“First of all I just want to take a moment and thank the team of ISF that is with me today.  I always say after events like this to remember, every time you hear the word “Erin” it really means us.  I am nothing without all of you standing next to me and none of this would happen without the people here today.

October 6th, 2007 – this day has always meant something to me because it was the day my life changed forever.  My 2-year-old daughter was next to us in pigtails – wearing a pink t-shirt with a mermaid on it that we bought her at the Fort Fisher Aquarium that summer.  We weren’t sure what we were going to be told in that tiny room but in just moments we were introduced to a word we had never heard.  Neuroblastoma.  We were quickly taken to a waiting room in clinic that would become our home for 5 years and would soon meet our new oncology family, who I still see in the audience today.  

Sure, we may of known on that day that our life would change forever.  But what we didn’t know is that the little girl that just walked through their clinic doors would change their lives forever too.  The domino effect of that day is still falling.   

I look out into this sea of faces and I see lives that will never be the same because of her.  All of the people who were there from the beginning who made my cause, their cause.  I can see kids that like her will be walked into a clinic waiting room and will see and feel this domino effect of her life due to this gift and that gives me hope and inspires us to make this commitment.

For us to take on this huge milestone with Levine, it is more than just a check.  We are not famous or wealthy – we are just normal people who are doing amazing things.  The blood, sweat and tears that we will put into raising this money will keep us up at night.   But the faith that we have in Javier, Callie, all the doctors, nurses and administration keep us moving towards this goal because we believe in you.  I know this will be one of the best things you will ever do with your life, just like us.  We are in this together and we are beyond excited to watch this program grow into something that will receive nationwide attention and bring kids from all over the country to Charlotte to have the best chance of survival.  No pressure – but I know you feel the pressure.

So thank you for allowing us to be a part of the biggest thing to happen for kids with cancer in Charlotte region and beyond.  I can’t wait to see Isabella’s name on the center that brings new hope, treatments and cures to kids with rare pediatric cancers.  The only thing better would be to have here her alongside me, but in a way – I think we all know she is.”

With this $5 million 5-year initiative, we will be changing lives.  We will be the foundation of something special.  We will have the best pediatric cancer program, right here in Charlotte, North Carolina.  And we need your help.

MORE:

The Isabella Santos Foundation Commits $5 Million to Create Rare & Solid Tumor Program at Levine Children’s Hospital

Levine Children’s Hospital gets $5M for cancer fight

Atrium Health’s Levine Children’s Hospital announce $5 million donation from Isabella Santos Foundation

$5 Million Has Been Donated to Treat Childhood Cancers by a Foundation Set Up by Parents

New specialized treatment room coming to Levine Children’s Hospital, care of Isabella Santos

Levine Children’s Hospital Gets One Of Its Largest Donations in History

$5M donation will create ‘rare and solid tumor’ program at Levine

Pediatric cancer care gets $5M boost from Isabella Santos Foundation

 

Ethen’s Fight… To Write His Own Story

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Contributed by Wheela Sunstrom

If a two-year-old were capable of writing his story, what would he say?  Would he tell you his favorite colors? Would he reveal his favorite food? Would he describe his favorite outfit, his favorite toy, his favorite hobbies, his favorite book? Would he tell you he loves his brother and sister, and also his mommy and daddy?  The answer is a resounding YES.  He’d tell you all of those things, and probably much more.   But a diagnosis of Stage 4 neuroblastoma at only 18 months old changes all of that. If Ethen could put tiny pen to paper, his version would answer things like: Who is your favorite doctor? Do you have a favorite nurse?  What does it feel like to have cancer? Does chemo hurt? What about radiation What about the tests, the tumor surgery, the catheter,  the stem cell and bone marrow transplants, the antibody treatments, the intubation and the ventilators?   Are you afraid?  Do you love your brother and sister, and also your mommy and daddy?

Eighteen months.  Less time on Earth than a mobile phone contract.  Far too young to have to answer some of those questions. Too young to be burdened with these weighty concepts, to need the strength and knowledge of a superhero battling one of the cruelest villains in life.  And yet, a small superhero body does what it knows to do:  Fight.  His mom finds the silver lining:  It’s all he knows. It’s unfortunate, but it’s easier in a way. For Ethen’s family, this became all they knew too, the “new norm.”  Conversations and celebrations alike revolve around cancer. His parents fall just as easily into discussions about his diagnosis, his treatments, and his prognosis as they do the weather.  “Did you see that new show on tv?” seamlessly transitions to, “What are your worst fears?”

And those big, gigantic fears frequently have to take a backseat, sandwiched between milestones like birthday parties and learning new words. Because a diagnosis stalls you at first, then launches you onto an unfamiliar freeway, dumping you into a chaotic traffic jam of Wait-and-See with sporadic moments of Move, Now!  There’s often no time to consider anything else but what’s right in front of and around you. You begrudgingly tighten your seatbelt, then sit.

Most people see their lives in increments of extended time: 3 months. 6 months. A year. Families with a neuroblastoma diagnosis tend to have a very different range:  3 weeks.  6 days. An hour. Forget about family vacations and playdates. You’ll find those in the trunk, buried under the What Ifs.

There are also happy moments he would sprinkle throughout this tale.  An attention-loving, silly two-year-old would definitely say something about the fun things, the brighter things. Giggle fits, kissing attacks, successful steps, relieved anxieties. The new extended family made up by doctors and nurses and staff and supporters and other patients who provide a familiar comfort. These once-strangers who make the good days wonderful and the bad days less bad. After all, Ethen has become their child too.  They are all on the same ride, all wanting the same thing.

The ultimate goal? Kids like Ethen get to write their stories, their way. Without intubation and ventilators and antibody treatments and transplants and surgeries and tests and chemo. They get to spend more than half of the year somewhere besides a hospital, celebrating milestones. Independent, affectionate Ethen would tell about his favorite cereal, his favorite toy,  his favorite Mickey socks, his favorite bear, and his favorite book. The story wouldn’t revolve around cancer. Down the road, he’d share the experience of losing his first tooth: Did it hurt? Was he afraid? He’d definitely talk about the fun things, the brighter things.  And he’d certainly say he loves his brother and sister, and also his mommy and daddy.

This is why we do what we do. Because these are the stories children should be telling – the stories they want to tell –  not the ones they have been forced to tell.  Our mission to help shape these narratives is clear, and we won’t stop until they are all happily-ever-afters.

His favorite colors are blue and yellow, by the way.

UPDATES ON ETHEN’S FIGHT