Tag Archive for: charlotte childhood cancer foundation
We are extremely overwhelmed with gratitude to announce a $250,000 gift graciously donated to ISF by The JEM Project. This organization was set to be our presenting sponsor for our 2-day coffee events and stepped up to make an even larger impact during a time of crucial lost revenue for us.
During this time, concerned for our future and our ability to impact kids fighting cancer, we want to remind everyone how essential nonprofits like us are. Pediatric cancer doesn’t stop, no matter what is going on in the world, and neither will we.
Thank you JEM Project. It’s hard to put into words how grateful we are for the impact you are creating for kids fighting rare pediatric cancer and for our community. Not to mention the difference you have made on each of us at the foundation. You have given us the ability to put one foot in front of the other, during this difficult time and continue our mission. We are so humbled and appreciative of your organization. Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of this gift.
Isabella’s Mom, Erin, shares first how powerful this impact is for her personally…
I hit it off with Leah in about 10 minutes over lunch. We connected on all things family, life and cancer. Listening to her tell her family’s cancer story just proved to me, as it does time and time again, we all have a story to tell. It isn’t until you lose someone from cancer, that you really understand the importance of funding. We always appreciated all the family services that were provided to us when our daughter was going through cancer. Gas cards, dinners, gifts for our kids – all necessary parts of the process. But when your daughter dies – it became crystal clear to me why she died. There weren’t enough people out there overflowing research buckets with money. Then you meet more and more kids, and their stories remind you of your own – you become close to these families and you see the look in their eye. They are scared, just as you were – but they look at you and the look in their eyes says… “please hurry”. Our Foundation lost one of our closest patients (Madison) in December of 2019. It rattled us all to our core and it was the first time I thought about quitting my job. It wasn’t happening fast enough and I felt the blame for this little girl not surviving. My own daughter would tell me over and over again how proud she was of me because the job I was doing was saving little girls like Madison. And then we didn’t save her. I wondered what we were even doing anymore if we couldn’t save this one I REALLY needed to save. I have to say, I checked out. I had to do some true soul searching.
Fast forward to mid January. Our team was pissed. We were hurt. We decided that we needed to make big changes. Like my daughter, I felt like Madison was taken to change people. I couldn’t ignore how similar this situation felt. The feeling of wanting to just walk away – not allowing yourself to change because you don’t want to feel this pain every day. But instead, I allowed Madison to change me. 7 years after my daughter passed away – a little girl was brought into my life and then taken from us – a reminder of why this whole thing started 13 years ago. We started planning.
Our 2 day coffee event was looming and I have never seen my team so excited. We felt like we had a purpose. Madison’s mother had agreed to speak and I knew it would be one of the most difficult things she would ever do. As a team we set a goal. $250,000 over two days. Not only were we going to continue our mission to bring the top doctor in the nation who specializes in rare cancers to Charlotte, but we were also adding in trials in honor of Madison to help change outcomes for kids with Osteosarcoma. We were ready. Our two day event was filling up, our sponsor list was bigger than ever and our program was set.
And then it hit. As each day passed we felt our event slipping through our fingers. At first it felt like a train coming right at us that we were trying to derail, but no matter what we did – it just kept speeding up. I knew we had to make the call. The word had just come out that gatherings of over 50 people were prohibited. My stomach just dropped. It was the first week in March and our event was a little over 2 weeks away. I was out of town and found myself taking long walks – wondering how to shake this feeling that we were letting Madison down…again. How could this be?
Then Leah from The JEM Project called.
I feel like the call was a blur. I just remember sitting in my room once the call ended and crying. In 13 years of the Foundation I have never received a call like this. You would think receiving money for rare pediatric cancer would be easy, but it’s not. People don’t really understand unless they have lived it. But for the first time, someone got it. They didn’t have to bury their own child to get it either. The money we received from the JEM project saved us all. Not only did it allow us to continue with our mission but in a way I feel like it saved me the most. My daily struggle of wondering if I am ready to move on. Am I still making a difference? Can I look at these families and tell them that we are in fact hurrying because their kids are just as important to me as mine was? This money did all that for me. It kept my team alive, it kept these families alive – it kept Isabella’s dream alive.
Dear JEM Project…
Jessica, I have never had the pleasure of meeting you – but I hope one day I will. I want you to know how meaningful this donation was to so many people. You have such an unbelievable opportunity to change peoples lives forever. The lives of kids, their parents and families and all of us who are trying to save them. The work you do blows me away when I see all the organization you are assisting. You are a lifesaver and no thank you I can ever say will truly convey how I feel. It has left me speechless – which rarely happens.
Leah, words can’t describe what meeting you has done to me. Thank you for “getting it” and believing in me. I promise to never let you down. You have been a person who has come into my life and changed things forever.
The state of our country scares me. I fear that people will forget that cancer never stops, even during all this. If we forget about organizations like ISF right now, who will be there for these kids when they need it the most? I pray our community will rally around us and remember that we are ESSENTIAL. We can’t stop. Lives depend on it.
My hope is this is just the beginning of our relationship with the JEM project. I am excited to keep you both informed of what we are doing and how your money is working because there is so much more we want to do. Stay tuned. We are just getting started.
All my love and forever thanks,
Erin (Isabella’s Mommy)
MORE THANK YOU LETTERS:
Dear JEM Project: Your Donation is Giving Children Fighting Cancer Time (Isabella’s Grandma)
Dear JEM Project: Thank You for Donating in My Sister’s Name (Madison’s Sister)
Ho ho ho! Surprise… it’s Christmas in July! Our ISF elves have been busy picking out the best toys for some extra special boys and girls. Today was the big day! Santa ditched his summer surfboard and broke out his sleigh to travel all the way to Levine Children’s Hospital with a special stop at the oncology floor and clinic. Thank you to all of Santa’s ISF elves and supporters who make magical days like today possible.
Huge thanks to Toys and Co. for helping our elves with the toys!
Originally published by The Charlotte Observer Editorial Board
Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!
Reimagining pediatric cancer care in Charlotte
Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.
Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.
Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.
But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.
So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.
Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.
Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.
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