Tag Archive for: charlotte childhood cancer foundation

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

 

Sometimes an 8 year old can just put everything in to perspective

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Written by Erin Santos, Isabella’s Mom
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I knew that Jersey Mike’s Subs Day of Giving was going to be good, but today exceeded my expectations. I knew lunch would be crazy so I spent my lunch watching social media flood with everyone I knew getting lunch while I patiently gave platelets at the blood center. Also, because this was about Isabella, I wanted to take the kids for family dinner tonight. We ventured out to a new location for us on East Boulevard. When we walked it, I was so excited to see the team in their Cancer Messed With shirts. They of course greeted us when we walked in, not knowing the story that just walked through the door. The first teammate noticed my shirt (CMW the wrong family) and said, “Hey! Look at us in our matching shirts!”. I told her I loved not only the shirts but everything they were doing today in honor of my daughter. I was Isabella’s Mom. The assembly line stopped and I was created immediately with hugs. Sophia of course proudly announces that she is her sister too. The manager tells me how honored they are to be a part of the process and how he read a great interview that I did in Creative Loafing a few years back. It hooked him and and he has been following us every since. He was happy to be a part of the team that provided dinner for the Levine families earlier this month and proudly showed me the photo on the wall.
 
Sophia and I proceeded to eat together in a booth alone as I listened to her talk about her day, stopping every so often to hug me. Midway through our meal, a man and a woman came over and shook my hand. They just wanted to come over and meet us. Turns out their son Tristan, was diagnosed with neuroblastoma at just 5 months old. He has had 4 rounds of chemotherapy and 2 surgeries already in just 9 months of life. They had always heard of us and were so excited to meet us and thank us for all that we are doing. I told them they were in great hands at Levine Children’s Hospital and NB caught under the age 2 has a very good prognosis. We would love to help them with anything they need but by the look on his face I felt like maybe we were already doing enough. He jokingly said that this sub will taste a whole lot better now after this and loved that it was going to help kids like his. He shook my hand again and looked me hard in the face and said, “Thank you.”.
 
Only a couple kids in Charlotte with NB and we stumble across them randomly tonight. I try not to let these things screw with my mind – the whole coincidence of it all so I turn back to Sophia. She says, “Mommy there is good and bad about Isabella dying. Bad because she can’t sit here with us at this table, but good because we are helping that baby.” I get one last hug and she is back to her food. Sometimes an 8 year old can just put everything in to perspective.
 
-Erin, Isabella’s Mommy

Outside Looking In

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I haven’t been able to shake the news of TJ Anderson’s passing today. I can never fathom being in TJ or Isabella’s parents’ shoes, heads or hearts and losing a child to cancer. With Isabella, I simply watched from the outside looking in. It changed me forever.

I will never forget watching Isabella’s little body struggle for life with every breath she took during 3F8 antibody treatment at Memorial Sloan Kettering Cancer Center. I will never forget the 2 ER visits in one night due to adverse reactions to treatments that day. I will never forget taking a shift at night in the hospital so that Isabella’s parents could get some rest… and Isabella was up all night puking blood in a bucket while her life was hooked to machines. I will never forget the next morning as she lifted her head off the pillow and her dyed red hair was falling out AGAIN due to the kitchen sink chemo procedure. I will never forget sitting with her during chemo treatments at Levine Children’s Hospital and watching a teenager receiving treatment right across from us… when both Isabella and this teenager should be with friends or at school. I will never forget getting called in the middle of the night to come sit with Isabella’s siblings while her parents rushed her to the hospital. I will never forget Erin’s shaking hands as she begged and pleaded with the doctors to operate after they said there was no more options. I will never forget the doctors lecture on how it was time to think about Isabella’s quality of life. I will never forget kissing Isabella goodbye while she laid un-alert in her parents bed and how ashen she looked.

I will never un-see these moments. I saw too much to not take action and continue fighting. I watched from the outside looking in. It changed me forever.

We talk a lot about taking action… awareness is simply not enough. What are you doing to turn your awareness into ACTION?

– Rachel, ISF Marketing Director

TAKE ACTION:
Donate
Volunteer
Sponsor: dre@isabellasantosfoundation.org

Volunteer Position Opening: Silent Auction Project Manager

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Get involved in your community… a resolution on many 2018 Intention lists.  The impact of our raffle and silent auction at our flagship 5K/10K September event has grown leaps and bounds since introduced in 2013.  The dollars raised through our silent auction helps impact our direct mission of helping kids fighting cancer.  We are looking for a Silent Auction Project Manager (volunteer position) located in Charlotte to head up our 2018 Silent Auction Committee.  Our raffle and silent auction has become such an important part of our fundraising goal and we have some new things in store this year.  This is not a ‘start from scratch’ volunteer position as there is a committee in place and the structure is built.
Position Details:
  • Run monthly silent auction committee meetings
    • Set ongoing monthly committee meeting
    • Primary contact with committee volunteers
    • Go to on all committee questions & follow up
  • Incoming auction item data entry
    • Enter auction items as they come in from committee volunteers
  • Manage business contact list
    • Manage business contacts excel spreadsheet
  • Auction package display
    • Manage the packaging of all raffle & auction items needed for event location
Timeline:
  • February:  Committee meetings and auction collection starts
  • June-August:  Heaviest auction collection months
  • August & September:  heaviest volunteer work due to event date
Thank you to all the volunteers who help make our raffle and silent auction a success each year!  We couldn’t do any of this without you!  More than anything, we have a wonderful group of volunteers and it is a great way to meet new people and develop new friendships!  Please contact Andrea if interested: dre@isabellasantosfoundation.com

It Started With A Girl…

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New year. New look.  With 10 years behind us, we made the decision to start the new year with an updated look.  We have so many new things on the horizon, we felt like our Isabella logo needed to evolve again as the foundation grows.

You probably have noticed that we take every detail into consideration here at ISF.  We like purple… we like to make sure our mark in on everything and no bow goes untied.  Our ISF girl logo is no different.

When the foundation was created, our stick logo was created based on Isabella.  Very innocent and child like.  Because of Isabella’s physical limitations, art became her safe place.  Isabella would spend hours drawing and coloring.  She would draw pictures for everyone and it became her way of saying thank you.  What started as a stick figure little girl that Isabella could easily draw and color, became something else.  It became her legacy.

Several years ago, Isabella’s stick figure logo evolved into the girl on the world.  After all, that is how we all saw Isabella.  We saw that the world was at her fingertips and no matter what happened to her, she was going to conquer anything.  It started with a girl….

This logo has moved and shaped into a life of it’s own.  We love to spot our Isabella logo around the community and on the walls in the hospitals or organizations we work hard to impact.  We love that Isabella lives on through her own art stamp and that we see her in the kids we are hoping to help. She is changing the world.

What do you think of our updated Isabella logo?