ISABELLA SANTOS FOUNDATION RAISES $30,000, GIFT SUPPORTS NEUROBLASTOMA RESEARCH AT NATIONWIDE CHILDREN’S HOSPITAL
Columbus, OH – 12/6/2017
Columbus, OH – 12/6/2017
Written by Erin Santos, Isabella’s Mommy
It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital. I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors. The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me. I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that. I feel like I have become so much stronger around them. Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event. Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event. I feel him coming down the hall before I even see him, just like it used to be – and my heart still stops for a minute. We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later. It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history. Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.
Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan 🙂 As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s. We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate. I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago. Cancer can make you love and hate people all in the same week. He is easier for me because we don’t have the 5 year history that I had with Kaplan. He wasn’t there in the beginning or the end.
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TURN YOUR AWARENESS INTO ACTION:
Isabella’s Dream Team week one is complete. With our first group run behind us, one number gave us the inspiration needed behind every step, every bead of sweat and every sore muscle. 1843. The number of missed kisses. The number of missed goodnights. The number of days since Isabella passed. This season our team will run with an updated number on their arms every Saturday. To remind us why we are running. We run until that number is zero for parents of children fighting cancer. It’s not to late to join.
Read the #Runningtozero blog below… written by Isabella’s Mommy around this time last year. And why she started counting days.
#Runningtozero
I tossed and turned in bed. I knew my mind was racing. I had this feeling a lot back in the day and I know how to fix it. I had to write. I knew that if I did my mind would settle and I could sleep. But the “new” Erin convinced myself that my anxiety was due to the Dream Team 6 mile run at 6:30 am the next day. It was just nerves that I would oversleep or worse, not be able to do the run.
My mind and body tossed from 10:30 pm – 1:30 am.
I woke at 4:30 am and I knew it wasn’t running nerves. The day before while shopping I received a call from a new friend. Her Granddaughter just received results from recent scans and the neuroblastoma was aggressive, although I not sure aggressive accurately describes it. The neuroblastoma had become deadly. Palliative care options were given due to the rapid progression of the disease.
I tried to remain calm with the news because at this point in my life, I know that Doctors are really just guessing. You learn this when you too, have been given this option several times – yet your own daughter proves them wrong and makes a comeback. These Doctors are not God and you learn this the hard way. I gave the best advice I could give.
Tell the parents to read their daughter. If she wants to fight – then fight. If she is done, they will know and then the fight will be over.
We read Isabella each time we got devastating news. Doctors said she was done but her light showed “Green” so we fought. Sometimes it seemed “Yellow”, so we would cautiously continue. But when it turned “Red” for the first and only time – we stopped. She died quickly.
But I found myself Friday night at Nordstroms, crying. Sad and Angry.
It feels like we just made our decision. It was just yesterday right? I found myself at 4:30 am counting days.
1494
There is no way.
I began to freak out that another mother might soon be counting.
1 is the hardest number. But oddly 1494 still feels hard. When you see that number it may seem like a lifetime ago. But for me, it feels so recent. It’s 1494 missed kisses, missed goodnights, and missed smiles. I’m sure that number can be a hard motivator for some to take action. But to me, that number is as motivating as ever. Especially during these hot summer months when every number we see kills our motivation.
99 degrees, 100% humidity, 13.1 miles, 6:30 am, $500 fundraising goals. You may begin to wonder why you are doing this to yourself?
1494. That number motivates me because it’s an awful number. And next Saturday that number will be 1501. My number will continue to grow this season and I know that everything I’m doing, every time I ask for a donation, and every mile I run in this heat is so that someone like me will not have to write that number on their arm.
I will run and continue to ask until that number is zero.
#runningtozero
Isabella’s Mommy
Isabella Santos is a name that many people recognize in the Charlotte, North Carolina area. She has become synonymous with Neuroblastoma and other orphan cancers. Her parents started the Isabella Santos Foundation as a way of keeping her memory alive and help reach her wish of ‘No More Cancer’. As we celebrate 10 years of the foundation we thought it fitting to share with you the impact Isabella and ISF has made on the people who are a part of and support our growing organization.
Children who are diagnosed with cancer are the smallest fighters, but they do not fight alone. Fighting alongside these tiny victims are the parents, siblings, relatives, neighbors, extended family, and friends. They are silent gladiators and resilient people who walk alongside these children and their immediate families. When a child is lost from cancer those supporters become the unseen victims and lose something, as well…. they lose what should have been. It is these supporters we celebrate for helping us grow.
She should have been a best friend.
“It’s hard to forget someone who gave you so much to remember.” Unknown
Today we introduce you to Stephanie Foreman or Miss Stephanie, as Isabella called her. Her daughter Solei was Isabella’s best friend.
So many amazing people are associated with The Isabella Santos Foundation. Some of these people have been there from the very beginning and others have been called to action once they met or learned about Isabella.
Tell us about your connection to The Isabella Santos Foundation and how long you’ve known the Santos family?
My connection with the Isabella Santos Foundation is very connected as our daughters met their first year at preschool in the “two’s” and became best friends right from the jump. We are talking roughly a decade ago.
Families faced with a seriously sick child meet the challenge in so many different ways. Erin and Stuart chose to not only fight for Isabella, but to create a foundation in her name that would bring awareness to Neuroblastoma and work to find a cure for all children.
When you first heard about Erin and Stuart’s idea for a Foundation what were your thoughts?
My first thought was it was a must. Having your child diagnosed with such a vicious cancer, the only way to go was to raise awareness and immediately bring attention and funding to this horrible nightmare they were facing.
Are you a part of the Isabella Santos Foundation today? If so, in what way are you involved? If not, what took you away from it?
As a single parent of two my schedule is pretty complex, but each year at the ISF 5K Soleil, Ciel and myself volunteer and try to help out where we can. I give blood when possible and definitely spread the word to others who know us, Isabella and her story.
I will say I am beyond proud of Erin, Stuart and the whole ISF team and I have watched this foundation grow from zero to the now magnitude of this foundation. Its truly incredible what they have accomplished. Wow.
Moments we have with our best friends stay with us forever. We can recall the sleepovers and nighttime whispers in the dark, as not to wake up mom and dad. These first friends inexplicably shape who we become. They never leave your memory no matter how far away you wind up living or how out of touch you become as the years fly by. Isabella made a lasting impression on so many people. Not only the people who knew her personally, but on countless strangers and readers of Erin’s Caring Bridge posts.
Can you share your fondest memories of her?
That question is a little hard to answer as I have many. Isabella’s laugh was infectious. Memories of the sleepovers and hearing IB and Soleil giggling upstairs in their princess dresses. The CD player always on in the playroom and they would have little dance parties and act out their favorite disney movies at the time. Sitting around my kitchen table and IB always making it very clear on her likes and dislikes of vegetables, as I would try and convince her otherwise…never worked lol. Our trips to Oak Island and just swinging on the porch swing with her and watching IB and Soleil in the ocean on the boogie boards. Out of all the memories what sticks with me the most was our “secret handshake”. We had made this up very early on and whenever we would see each other, IB would always grab my hand for our “secret handshake” and we’d wink at one another. Isabella made sure to let me know not to disclose this handshake to anyone. It was a secret, it was ours, and always will be.
How has Isabella impacted your life?
In more ways than I can even explain. The biggest impacts of all are strength, the courage to keep going , and faith. To this day I am still in awe at Isabella’s strength and will. What I witnessed, the horrible treatments, medicines, side effects, scans, changes to her body, losing all hair and so much more…and regardless…she kept going and going. Her courage was beyond what I knew courage to be. Different hospitals, cities, treatments, doctors, different environments and through all of that, she had to courage to keep going. I had faith before her passing but after that day of June, 28, 2012…it all changed. I definitely struggled with the “why God” “is there a God” “if there is than why would this happen”, all these questions. My faith now is actually stronger because of Isabella. There are too many signs and unusual events that happened to me after her passing. Some that can not be explained. All I know is what I personally experienced and now know that there is a “in between” and a “hereafter”. Isabella made these impacts more than a reality in my daily life.
How do you feel ISF’s call to action has made a difference over the last 10 years?
Let me just state it like this. I can’t even go into my car dealership or grocery store without seeing a poster of the Isabella Santos Foundation. Their call to action has brought an enormous amount of attention and funding to the research of kids cancer. Their whole team has done an incredible job of marketing, fundraising and all around awareness to this wicked, horrible and relentless disease. I have seen this foundation grow from day one and to see it now is a beautiful thing.
Originally, the 5k for Kids Cancer run was a way of raising money to offset the financial burden that Isabella’s parents were faced with due to the overwhelming costs associated with saving Isabella’s life. It has turned into a major Charlotte event, adding a 10K and is raising hundreds of thousands of dollars.
Looking back at where ISF began and where it is 10 years later, with its numerous arms that have developed since its conception, what are you most surprised about and proud of?
The growth. Its incredible to be at the race every year and see the development and magnitude in growth and attention.
How has your outlook on life changed and what life lessons have you taken away from having lost such a special little girl?
Perspective on all aspects of my life. What I may be going through “at the moment” is NOTHING compared to what IB had to endure. I literally think of her every time I’m going through pain, hardship, stress…whatever it may be. Its puts EVERYTHING into PERSPECTIVE. If her little body and sweet spirit could endure all she went through….you better believe that I can put my soldier rag on and keep pushing forward!
Your relationship with Isabella was different than most. Why do you think you guys bonded so well?
We bonded so well mainly because I wasn’t Mom. I was Ms Stephanie. I was her besties mom that “may have” let her get away with a little more than Erin would have..lol. Staying up later at sleepovers, perhaps more sweets, being super silly and not caring who was looking, different aspects of things, there were many. We just clicked from the first playdate… she was my “Ibba” forever more.
When you came to see Isabella before she died Erin recalls that she couldn’t get you to look her in the eyes during that time. Why?
That day, to this very day was the worst day of my life. My grandmother passing and other family and friends in the past was beyond heart wrenching and extremely sad but to actually witness a seven old girl, my daughters best friend, a little girl who was like my own, and watch her take her very last breaths of life was something I couldn’t even believe was truly happening. Isabella had fought so long that I couldn’t even grasp that this was actually it. This was the day and moment she was leaving us. I held her hands, thanked her for being the best friend Soleil could ever have, asked her to watch over Soleil in her life to come, squeezed her hands and gave her our “secret handshake”. I could barely look at her as my heart was literally tearing into a million pieces. I had never until that day felt that kind heartache. I would wake up with panic attacks months after that. Knowing what Erin and Stuart had to go through witnessing their baby girl take her very last breath. It is unimaginable until you go through it or know someone who has. To this very day I have moments of going back to June 28th 2012 and get that feeling of despair all over again. My stomach sinks and I feel a void. What keeps me from staying in a sad place all the time is knowing that Isabella is beyond proud of her family and the accomplishments that have been made. Her passing is not in vain and because of it….lives are and will be saved.
How has Isabella’s passing affected Soleil?
Isabella’s passing has definitely affected Soleil. I guess to some you don’t realize the long term effects on a seven year old when her best friend passes away. Not only did Soleil endure the split of her parents a year and a half prior but then her best friend passing away. Separation anxiety and other issues has risen in the last few years and in journals and therapy sessions you really start to see how it has affected her. Thankfully to a few encounters and unique situations that have occurred in the last few years, her faith in knowing that Isabella is and always will be there to talk to and guide her is a beautiful thing. Soleil talks about her and lets all her friends know that Ibba was the “original” and “always will be” BFF.
For those of you who are not familiar with Neuroblastoma: Memorial Sloan-Kettering Cancer Center (MSKCC) defines Neuroblastoma as a rare cancer of the sympathetic nervous system – a nerve network that carries messages from the brain throughout the body. It is usually found in young children and is the most common cancer among infants. These solid tumors – which take the form of a lump or mass – may begin in nerve tissues in the neck, chest, abdomen, pelvis, or most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow. The cause of Neuroblastoma is unknown. Learn more about Neuroblastoma.
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.
Her legacy…
“I look at what she has accomplished in the last 5 years since I last saw her and it makes me so proud. It makes me think that we really must have done something right. All these years that we beat ourselves up on where we made a mistake or wrong turn that ultimately ended her life. But, maybe all those decisions were the right ones because they brought us to this place we are now, to a place where her legacy is outliving her actual life. It brings me to a place where somehow her death is making the world a better place for someone else.
This thought is something that helps me sleep at night because I know this is only the beginning. All of those pieces of her may be slipping through my fingers in my own life, but it’s building something bigger than me. She experienced all that pain, so that this wonderful thing could happen. And maybe now I have to experience all the pain to keep allowing it to grow. It’s the least I could do for her and I should feel honored to do it.
Not a day goes by where I don’t miss her. I still can’t honestly say I wish this never happened to us even seeing all the good it has done. But maybe that day is coming where I will understand it… I’m getting there. I just wish she were here to witness it all alongside me.” Isabella’s Mommy
While Isabella didn’t win her fight against neuroblastoma, you can honor her and help families and kids in the fight against theirs. For our 10 year anniversary and with a goal of $1,000,000 we are looking for 100 people to become part of ISF as a Sustaining Monthly Donor.