Tag Archive for: charlotte pediatric cancer nonprofit

Isabella Would Have Been 14

Written by Erin Santos, ISF Executive Director & President

6 years ago you couldn’t pay me to sit and have coffee with a little girl who beat cancer and was also Isabella’s age.  No Thank You!  But time has passed and now I find myself being eager to be in the presence of 13 and 14-year-old girls.  I’m constantly wondering what they are into, how they behave and what they say.  So when I got the opportunity to meet Sydney, who beat cancer last year I was excited about our meet and greet.  Side note, we also helped fund her Make-A-Wish trip to go to London for the ultimate Harry Potter experience.  Another side note, Sidney’s sister was in Grant’s preschool class at Calvary when Isabella was diagnosed and fighting.  We had no clue at the time of raising funds for her trip that it was for a girl who we once had this connection with. Full circle.

This girl was precious… like beyond precious.  She was beautiful and mature and wise beyond her years.  I find these are all traits of a child who has stared death in the eye more than once.  I couldn’t stop listening to her talk and was consumed with the fact that she let her mom dote on her and play with her hair while she talked to us.  Any other teen would have swatted her Mom’s hand away.  But I feel like Sydney allowed it because she knew her Mom too went through something and knows she is lucky to be alive.  

I loved listening to her talk about the doctors and procedures and how it really felt to go through all her treatment.  And then I asked the question, “So what do you want to be when you grow up?”  Such an innocent question but as she answered, I felt a lump in my throat and the tears beginning to swell.  So jealous that she can answer this question and how I craved being able to ask it of my own daughter.   No matter how much I try to hide the pain, this family knows that no longer how much time has passed or how good I say I’m doing now – they really are the lucky ones.  They are in fact sitting with a Mom who should have a daughter sitting along with us.  Who knows, they could have even been friends.

Sydney immediately came to my side and put her arms around me and started to cry.  It was so touching to me.  I don’t know if she was crying because she was sad for me or sad for Isabella or wondering how she survived and Isabella didn’t.  It could have been a number of things but I have to say that it has been years since someone touched me in that way.  The hug lasted a long time.  For those of you who know me – that means it was over 5 seconds.  But his hug lasted for minutes.  I tried to release her but she wouldn’t let go.  It was if she knew I needed it.  She was right.

I don’t know what Sydney’s life has ahead for her, but I know it’s going to be amazing.  I’m excited to sit back and watch because this girl deserves every single minute of it and I know she will live it not only for her and her family but for some of those who didn’t get the chance to live it and I love that.  It makes me think that while some weren’t meant to survive, she is one that was meant to live.   Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life. 

It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.  14 years old… just like Sydney. Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sidney has finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same.

We hope you will help us pass this on yet again. Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.  

Isabella’s Birthday Wish Fundraiser

Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life.  It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.

Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sydney is currently 14 years old, finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free. Isabella’s mom, Erin, recently sat down with Sydney to hear all about her trip.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same. We hope you will help us pass this on yet again.

Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish. 

Committed to Improving Pediatric Cancer Care in Charlotte and Beyond

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

 

Kicking Out Cancer

Sometimes we come across a young adult that stops us in our tracks. And reminds us of how incredibly amazing kids are. This time it was Matthew Pennington who stopped us and made our hearts smile.

Matthew Pennington took part in Leadership Martial Arts’ Kicking Out Cancer event yesterday. The event raised a total of $5,200 benefiting ISF! Matthew won for most money raised and was presented with a autographed Carolina Panthers football. Matthew immediately donated the football back to ISF for us to use in our auction to raise more money. Gestures like these always gets us, especially when they come from kids. We learned that when Matthew was 10 years old, he lost his father to cancer. He started going to Leadership Martial Arts as a positive outlet after loosing his father. We love that he turned his pain into passion.

This is giving back. This is making a difference.

Grace donated her birthday money, she didn’t want other kids getting as sick as Isabella. Jackson joined Isabella’s Dream Team at 11 years old as the youngest member to help fund raise. Griffin, Riley, and Noah redeemed 5 year’s worth of arcade tickets for a Yeti cooler just to donate it back to our annual auction. Juliana wears purple every September in honor of Isabella, helping her high school every single year with their annual ‘Purple Out’. Blake saved every penny of her summer earnings at 7 years old to help ISF. We could go on and on about the incredible kids we have come across. And they all have reminded us of Isabella… who used to donate her birthday presents to the pediatric oncology clinic. Kids amaze us.

Giving back is important on all levels. All ages. Thank you Matthew for your passion. We were honored to spend the day with you yesterday.