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Awareness… What a Bullsh*t Word

Originally published on HuffPost, written by Erin Santos

(Written and published 5 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percent of the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
  2. VOLUNTEER
  3. REGISTER FOR 11 TH ANNUAL 5K/10K RACE (SEPT 29)

Outside Looking In

I haven’t been able to shake the news of TJ Anderson’s passing today. I can never fathom being in TJ or Isabella’s parents’ shoes, heads or hearts and losing a child to cancer. With Isabella, I simply watched from the outside looking in. It changed me forever.

I will never forget watching Isabella’s little body struggle for life with every breath she took during 3F8 antibody treatment at Memorial Sloan Kettering Cancer Center. I will never forget the 2 ER visits in one night due to adverse reactions to treatments that day. I will never forget taking a shift at night in the hospital so that Isabella’s parents could get some rest… and Isabella was up all night puking blood in a bucket while her life was hooked to machines. I will never forget the next morning as she lifted her head off the pillow and her dyed red hair was falling out AGAIN due to the kitchen sink chemo procedure. I will never forget sitting with her during chemo treatments at Levine Children’s Hospital and watching a teenager receiving treatment right across from us… when both Isabella and this teenager should be with friends or at school. I will never forget getting called in the middle of the night to come sit with Isabella’s siblings while her parents rushed her to the hospital. I will never forget Erin’s shaking hands as she begged and pleaded with the doctors to operate after they said there was no more options. I will never forget the doctors lecture on how it was time to think about Isabella’s quality of life. I will never forget kissing Isabella goodbye while she laid un-alert in her parents bed and how ashen she looked.

I will never un-see these moments. I saw too much to not take action and continue fighting. I watched from the outside looking in. It changed me forever.

We talk a lot about taking action… awareness is simply not enough. What are you doing to turn your awareness into ACTION?

– Rachel, ISF Marketing Director

TAKE ACTION:
Donate
Volunteer
Sponsor: dre@isabellasantosfoundation.org

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.

Her legacy…

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…

Santos Family

“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.

BECOME A SUSTAINING MONTHLY DONOR

MAKE A SINGLE DONATION

My gift to her…

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. 

My gift to her…

Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Isabella and Grant

“Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1stbirthday 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.

Isabella and Grant

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 is 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.”  -Isabella’s Brother, Grant

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