The before times…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Aunt Amy and Isabella

The before times…

“Newborn Isabella. That very first day. It’s one of the best memories for me. Rushing to the hospital to meet this tiny person who had, in a moment, made my sister a mother. The biggest eyes looking around with a puzzled expression, like a little old man who may have gotten off at the wrong stop. Tiny clenched fingers holding my own. Skin smelling that newborn smell and wrapped in that ubiquitous hospital blanket-the white one with the blue stripes, you know the one I mean. And me just holding her and marveling. My niece. My first niece. Erin is her mom. Forever, Erin is Mom to someone now. How crazy is that? Whispering in her ear that I loved her, how excited I was she was here at last, how much fun we would have together, how she was going to have so much fun with her cousins, when everyone grew a bit more, of course. It’s an ordinary moment. If we are lucky, we all have those moments-meeting the tiny people that first day. Whispering in their ear that they are loved and part of a family. Feeling that rush of emotion at the passage of time and that euphoria and that pure joy. It’s a feeling like no other. And I had that with Isabella. Holding her and marveling. She and I just looking at each other. Planning in my heart a lifetime of secrets and memories and adventures and stories and love together. I stayed in the hospital with them that night and loved waking to talk to Erin and listen to Isabella make those strange baby noises all night. Change her diaper. Hold her. Just let that joy, that happiness, for Isabella, for Erin, for the whole family, just soak right into my heart. I didn’t sleep much, but it was one of the best nights of my life.

At that point, I have to stop the memory sometimes. Because the sweetness is almost a pain. I don’t take that memory out to look at often. But I love memories like that one, of just the ordinary moments of the before times. Before cancer. Before ports and doctors and treatments. Before the Foundation. Before Isabella had to race for anything. When Isabella was just my amazingly gorgeous newborn niece and I was her joyful aunt. The pain of this memory is that I expected, holding my niece in the dark night of that hospital room, to have a million more ordinary moments with her. A lifetime of memories of shenanigans and secrets and stories and fights and drama and accomplishments to celebrate. Of Erin calling me and telling me what Isabella was up and me telling her about my girls. And that’s how it was going to go. But it didn’t. And so I tend to horde my memories of Isabella. My heart was ready for so many more than I have, so I guard the ones I have a little jealously. But I do want to share that one with you, that first night. Those whisper and her big eyes. Her warm body against my chest and all that joy.”  – Isabella’s Aunt Amy

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

ISF Funds The SADA Drug Delivery Platform with Memorial Sloan Kettering Cancer Center

Erin and Sophia Santos, Dr. Cheung & the MSKCC Neuroblastoma team

Memorial Sloan Kettering Cancer Center in NYC is one of the top Neuroblastoma research facilities in the country.   Dr. Cheung, head of the neuroblastoma program, and his team are doing remarkable things. In December of 2016, Isabella Santos Foundation gave $202,000 to Dr. Cheung’s team to help push a research program, The SADA drug delivery platform, forward.  We thank you for allowing us to choose these programs that will help move the needle forward on something we feel is really important and a step in the right direction for research and treatment.

One of the difficulties with previous cancer therapeutics has been the inability to control off-target effects.  Children may have the possibility to beat neuroblastoma, but then die from unintended long term side-effects caused from the traditional chemotherapies that affect all parts of the body.  The SADA drug delivery platform was created to control drug delivery with such precision that toxicity only occurs where the drug is picked up by tumor cells, and not to normal bone marrow, the immune system, kidney or other vital organs.  This  novel technology has the potential to completely change the way we deliver strong medicines needed for children, where off-target effects could be devastating with long term consequences.

Isabella Santos Foundation is funding the construction of the proteins that target the tumor cells, and the testing of these proteins in the fight against neuroblastoma.  If successful, this will not only make treatments safer and more effective for neuroblastoma, but can be transferred to use in all cancers.  

Isabella was treated at Memorial Sloan Kettering and we have seen the remarkable programs Dr. Cheung and his team have worked on.  Isabella ran out of treatment options.  She died because her cancer has very little funding.  We continue to work to change that.

Dr. Cheung

Hope Is Definitely Brewing

Photo courtesy of Daniel Cordero

We are absolutely thrilled to announce the results of our 2nd Annual COFFEE FOR A CURE. Just a few short weeks ago, more than 700 men and women gathered at Carmel Country Club in Charlotte, NC to not only learn more about Isabella’s story …but they also gathered to fill a room with hope.

Hope for a cure. 

This two-day event served as a call to action in the fight against pediatric cancer and to educate community members on the importance of bringing pediatric cancer treatments home to Charlotte.

Greg Olsen & Grant Santos, Photo courtesy of Laura Stikeleather

We are blown away, humbled, honored, and beyond grateful that the event raised $185,000 and donations keep coming in.  Not only were we excited to have Carolina Panthers’ Greg Olsen, WBTV Host Molly Grantham, Charlotte Lifestyle Personality Emily Maynard and Levine Children’s Hospital Head Oncologist Dr. Javier Oesterheld as key note speakers, but we were also honored to be joined by several other community supporters who touched everyone with their words: Grant SantosJackson & Tammy Lowry, and Melanie Miller.

During the event, we introduced our new major gift society, called The Three Wish Circle, With an annual gift of $5000 or more, donors can take their support of the ISF mission to the next level by funding more research for Neuroblastoma and help to bring innovative treatment options to our local community.  We were blown away that within 3 weeks of launching it, 15 individuals had already committed to it. If you have questions or want to know more about how to take your support to the next level, contact our ISF Development Director, Tia Wackerhagen.

Levine Children’s Hospital Head Oncologist Dr. Javier Oesterheld, Photo courtesy of Laura Stikeleather

Additionally, we recognize someone in the community each year, who lives a life with the same dreams and aspirations as Isabella and who is trying to make a difference in the world.  This year at our Coffee events, we were excited to recognize not only one, but three great people with our 5th Annual Isabella Santos Award.  Congratulations to Jackson Lowry, Lisa Weaver and Stephanie Grigg. Each of these three individuals have given back to their Charlotte community in different ways and we are super grateful to have them support ISF and other local non-profits.

Lastly, we could not have put this wonderful event together if it wasn’t for the support of our community businesses who help us through their sponsorship. It is through their passion for charitable giving and making a local impact that we are able to continue Isabella’s fight.

To everyone who supports us…we cannot begin to put words to how grateful that we are for the impact you are helping us make. We are so proud of what we have accomplished together and it is because of YOU. We do not do this alone and could not continue our fight without your help. We humbly thank each of you and look forward to a world with no more cancer where we will beat cancer, grow hair and live the dreams of all children fighting the fight.

With gratitude,
The ISF Team
Brighthouse Financial
Maxim Tickets/PSL Source
Bull Engineered Products
Community Blood Center of the Carolinas
Diamonds Direct
Carolinas Healthcare System
Levine Children’s Hospital
Charlotte Radiology
Novant Health Carmel OBGYN
Morgan Property Group
Pegram Superior Insurance
Tom Bush Law Group
Dermatology Laser and Vein Specialists of The Carolinas
Center for Integrative Sleep Medicine LLC
Scoop Charlotte
Next Stage Consulting
Southpark Pediatric Dentistry
Pure Barre
Southpark – A Simon Mall
Sign Up Genius
Little Nest Portraits
Moxie Mercantile
Magnolia Cottage Design
Blooming Events
Royal Cup
Pink Petunia
Stikeleather Photography