Celebrating 10 years: She should have been a best friend

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.

Isabella and Soleil

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.

Isabella and Soleil

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.

Isabella, Soleil, Ceil and Grant

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.

Isabella and Soleil

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.

Isabella and Miss Stephanie

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.

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