If You Build It, They Will Come
If You Build It, They Will Come
Written by Erin Santos, Isabella’s Mommy & Executive Director
Donate today for Giving Tuesday
One lazy Christmas I sat with my Mom and my sister and we talked about our superpowers. My mom said her crazy power was to look at leftovers and select the perfect Tupperware to store it in on the first try. My sister who is an avid baker said her power is to touch hot things without getting burned. Mine? Well, brace yourself… my crazy power is remembering movies, actors, and lines from movies. I have all this weird pop culture stuff up in my head that my boyfriend (note: superpower – solving complex math problems in his head) finds himself showing off at parties. “Hey Erin, what is the name of that guy with the mustache that did that one movie?” Like clockwork – I know who it is. Stay with me… you will get where this is going in a minute.
We sat down a couple of weeks ago as a team and tried to figure out how to accurately communicate to you all about this little program we have been building here in Charlotte. To most of you, it might feel like we are buying people and building walls. And yes, some of what we are doing is that exactly. But, what I kept hearing inside me was a line from a famous movie… but the voice was different. “If you build it, they will come.”
Field of Dreams was a movie with Kevin Costner (Ray) and James Earl Jones (the voice of Darth Vadar). In Ray’s dreams, he kept hearing a voice to tell him, “If you build it, they will come” and he feels the need to act. Despite taunts of lunacy, Ray builds a baseball diamond on his land and sure enough – the ghosts start emerging to play baseball. You know how the story goes.
The voice I was hearing may not be James Earl Jones, but it is just as familiar and sounds just like my daughter, Isabella, who passed away from neuroblastoma at 7 years old. For over 5 years, our family traveled back and forth from Charlotte to New York City and then again to Philadelphia to find the best cancer care for Isabella. So many times we were ripped from our families and our support system to find the best treatments. The effects of traveling wore our family down over and over, as we left behind all we knew, just to keep our daughter alive. Countless times I would hear devastating news and have nowhere to go and no shoulder to cry on. I remember receiving news of a relapse and having a full breakdown in an airport – waiting on my flight to return home. The looks from other passengers were heartbreaking, as total strangers came over to hug me. They were completely aware without any words from my mouth, that the little bald girl in my stroller was in grave danger. Just me, Isabella, and strangers in the LaGuardia airport. These were awful times. 5 years. 5 relapses. Her body finally gave in.
Today the treatments are more effective. I would like to think if she were diagnosed today, we would have received state of the art treatment here in our backyard. But there was no ISF that came before us, and we suffered because of it. But now, kids from all over the world are flooding here because of what we are building – thanks to you.
Since the inception of the Isabella Santos Foundation, we have partnered with Atrium Health and Levine Children’s Hospital. We have funded several clinical trials and developmental therapeutics, as well as funded a first in class MIBG therapy suite. But for us, the voice in our heads kept telling us to do more. So when we met with Dr. Oesterheld a few years back, the idea and vision of a new Rare and Solid Tumor Program were discussed. I knew at that moment, this was my baseball field in Field of Dreams. Sure, the idea sounded crazy and it would take moving mountains to raise this money. But as a parent of a child with a rare cancer, we lacked a program that specialized in helping us. We had the vision for the program – but how do you fund a vision?
We all kept saying… is this crazy? If we build it… will they come?
Let me tell you now – they are coming. And they are coming fast. We are seeing the program unfold right in front of our eyes.
Families are traveling to Charlotte from around the country and around the globe to receive care from Dr. Sholler and her team at Levine Children’s. They are coming to Charlotte, NC from Armenia, Germany, Hong Kong…and from all over our own USA. In fact, so many are coming, that we are pushing hard this last quarter to fund more doctors so they have the ability to treat every child that comes here. In the past 5 months alone, the Solid tumor patient volume has more than doubled. Faster than anyone could have ever imagined.
This program is giving families answers. Something we lost for my daughter Isabella. That’s real research and real treatments happening right here in Charlotte. Talk about a positive news story coming out of 2020… and we all know those are far and few between this year. If only that could be the headline we see on social media, instead of COVID or politics.
As we work tirelessly to bring in as much funding as possible to end 2020 on the most positive note we can, we continue to repeat the phrase, “if you build it, they will come.” This phrase could not feel more true than it does today. It speaks to Dr. Oesterheld and his vision and to the parents, who travel over many distances to save their children’s lives. It speaks to those who have donated time, resources, and money to help build this dream-to-reality rare pediatric cancer program.
So where does that leave us for the rest of 2020? We are in a mad dash to do all we can to make sure the program can continue to gain momentum and be successful. The pediatric cancer research lab which will support the new rare & solid tumor program is set to open at the beginning of December and Charlotte is on its way to being at the height of pediatric cancer research. Research coming out of this lab will create more treatments, resulting in more options. These are things Isabella and so many of the others we’ve lost didn’t have. And now thanks to donors like you – it’s possible. Thanks to your continued funding through 2020 and beyond, we are hoping to fulfill all the resource needs for the program. We are 100% confident this can happen because our donors trust in us and they know every dollar is accounted for. So we continue to plug away, recruiting the best of the best.
Alongside the doctors who are performing new research, comes a new research lab to support the program. And the reality is, labs need supplies. So for this Giving Tuesday and for the last 30 days of 2020, we are asking you to help contribute to the cost of lab supplies and help fund tools to fuel research. Sure, funding glass beakers, mice, and test tubes aren’t sexy… but what if the answer for a cure is laying in that one tube you funded? That is a pretty awesome feeling.
Survivor rates are improving, treatments are getting better and doctors are getting smarter. For so long it felt like change was coming but at a snail’s pace. Not any more. Our nationwide program is impacting lives TODAY which is pretty badass.
Levine Children’s is building history here in Charlotte and I am so thankful my team is part of it. Dr. Oesterheld, Dr. Sholler, and their team are re-writing the future of pediatric cancer care. And more than anything, I’m so grateful for your belief in my crazy inner voice…or should I say Isabella’s voice… to build and to transform.
After all, she is the one that started this all.
-Erin, Isabella’s Mommy
It is our goal to raise $20,000 on Giving Tuesday and a total of $39,000 by year-end… that’s one year of lab supplies + the start of funding for several research projects.
HOW YOU CAN HELP:
- Donate
- Like & Share on our social media channels (Facebook, Instagram)
- Create your own Facebook Fundraiser for Giving Tuesday to share among your network. The Facebook Company will match $7 million in qualifying donations made on Facebook on Giving Tuesday, Dec 1. (Matching starts Dec 1 at 8am EST until $7M runs out.)
Your gift helps fund tools to fuel research at Levine Children’s new pediatric cancer lab (click each level for details):[/av_textblock] [av_toggle_container initial=’0′ mode=’accordion’ sort=” styling=” colors=’custom’ font_color=’#7a54a1′ background_color=” border_color=” hover_colors=’custom’ hover_background_color=’#7a54a1′ hover_font_color=’#ffffff’ colors_current=” font_color_current=” background_current=’bg_color’ background_color_current=’#13c2e9′ background_gradient_current_color1=” background_gradient_current_color2=” background_gradient_current_direction=’vertical’ av_uid=’av-khwh09hn’] [av_toggle title=’$5-$99 | The Essentials’ tags=” av_uid=’av-2p3v8k8′] A donation of $5-$99 could help fund essential lab supplies that lay the foundation for research.
- Lab glassware
- Glass droppers & test tubes
- Safety supplies
- Drug experiment mouse
- Pipettes and petri dishes.
- Microscopes for 5 experiments
- General lab supplies for 5 experiments
- Analysis instruments
- Help fund a novel clinical trial. Clinical trials are designed for all aspects of pediatric cancer: to improve survival rates, side effects, find the right combination of treatments, with the ultimate goal of less cancer and more time.
- Pharmacogenomic analysis of patient
- Next-Gen Sequencing of rare tumors
- Cell culture media, the process of raising cells in order to study tumor growth
- Patient enrollment in Precision Medicine Program
- Supplies to create a “Mouse Avatar” of a child’s tumor. The development of a “Mouse Avatar” entails the implantation of patient tumor samples in mice for drug research. These avatars allow for each patient to have their own tumor growing in an in vivo system, allowing the identification of personalized therapy.
- Testing of drug panel of child’s tumor
- Creating a cell line of a child’s tumor
- Patient enrollment on a clinical trial
- Genomic sequencing of a child’s tumor
- Lab supplies for one month
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