Another Year Older She Should Have Been

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I have been around since Isabella was sick.  I traveled with Erin and Isabella for cancer treatments when Stuart needed to stay in Charlotte to work.  I was part of the friend rotation that helped with Grant and Sophia, arranged meal schedules, and managed household needs.  I have watched from the outside looking in, witnessed how different grief can look and how Isabella’s parents celebrate special dates like tomorrow, her birthday.  For Erin, she is in need for a time out.  She needs to get out of town where she won’t run into everyone who knows what the day signifies and hear their sentiments. She appreciates them but needs space.  She reads every text, social post, and email, but she just needs the time to breathe and process.  Stuart is in town spending time with the kids and will donate blood for Isabella’s blood drive.  He has always thrived during these times by being around others.  They grieved differently.  They have moved forward processing in different ways.  And that’s ok, grief looks different on everyone.

Tomorrow will always be a tough one. Isabella’s parents will continue to count birthdays and envision what she would have been like or into.  There will always be another year older she should have been.  Their hearts ache to celebrate her on this special day but are left intensely aware of the hole in their hearts instead.  

Every year this occasion looks a little bit different for the foundation.  ISF always celebrates Isabella’s birthday with a blood drive and over the years the entire month of March has turned into honoring her life with different partner events.  But this year we feel a shift.  An incredibly positive shift. One year ago we were gathered at Levine Children’s Hospital for the MIBG Therapy Suite ribbon-cutting ceremony.  8 months later it was complete.  Today it is open and accepting children fighting neuroblastoma.  We are collaborating with organizations and individuals around our great city to make a Rare Pediatric Cancer Program at Levine’s happen.  And tomorrow,  hundreds of people are donating blood at Community Blood Center of the Carolinas in her honor – our biggest blood drive ever!  We always knew it, but we can unquestionably see and feel all the GOOD coming from Isabella’s life.  And it feels powerful… powerful to know her life inspired so much.

After Isabella passed away one of our close friends collected letters from family, friends, and followers on their favorite Isabella memories and how she impacted them personally.  Her goal was to put together a book with all the letters as an everlasting memory of the inspiration Isabella was to all around her.  Although the project was never complete, I just recently got my hands on what many submitted.  I read them and the tears started rolling… I mean some of these letters make it feel like Isabella was just here with us.   I wanted to share a couple excerpts from several letters that jumped out at me…

“My final and favorite memory of Isabella and Joey together took place about 6 weeks before Joey died when we were all in the infusion together for the day. It is unclear to me as to why, but that day spent at clinic was seared onto my fragile, tender heart and I think about it often. It still makes me cry when I think about the two of them planning their wedding all while sweeping the floor with a little broom they had managed to pry from the nurse’s hands.  Isabella was in full planning mode, even asking nurse Paula to be the bridesmaid while Joey made it clear that Isabella would be responsible for laundry and cooking while he watched Star Wars on the couch.  Giggling and childish chatter filled that space on that sunny afternoon and as always our amazing little boy and beautiful little girl looked to hope and to life.   I still find it a miracle that laughter and hope were found in that sick ward on that January day.” -Maggie Aquaro, Mom to Joey who passed from neuroblastoma before Isabella

“I never met Isabella but felt that I knew her well. She was a part of our family; my children knew her and asked about her daily. We read her CaringBridge site together. She was in our nightly prayers. I celebrated the remissions of her disease and felt my heart break with the posts that informed us that “it” was back. With each entry that Ib’s mother wrote I marveled at her strength and grace and saw where Ib got her spirit. Ib lost her battle on June 28, 2012. Though I never met her, Isabella left a mark on my life that will be with me forever. She taught me that you never, ever give up no matter how bleak the circumstances, that manicures and pedicures and a slice of good pizza can make you feel better and that every girl has the right to feel like a princess. Ib was a gift and I thank her family for sharing her story with us.” -Meghan Mack, followed Isabella’s story through a Santos family friend

“The impact Isabella made on her class at Marvin was lasting.  She was witty, engaging, happy and most of all strong.  For me, her strength will remind me to continue to keep going with whatever it is that needs to be done… and to always do it with love.”  -Mrs. Perrone, Isabella’s Kindergarten teacher, Marvin Elementary

“Isabella brought something to our family that’s invaluable.  She showed my daughter a part of life that most 6 or 7-year-olds (and many adults for that matter) don’t get to see.  Isabella’s influence has Sydney and our entire family helping others and has built a foundation for a life with better understanding and compassion.  I have a feeling that everyone who came into contact with Isabella was forever changed and that’s a positive for the world moving forward.  Who knows which one of these kids will find the cure for cancer because they never forgot what it was like seeing what Isabella went through.  As a parent, as little consolation, as it may be, I would want to know that my daughter’s life had a profound effect on those she came into contact with.  It did.” -Chris Wilcox, Woody & Wilcox Show, 106.5 The End

I have so many memories of Isabella and love that they stay so fresh in my mind through working with the foundation.  I will never un-see all the moments during my time with her during her cancer treatments.  I saw too much to not continue fighting in her honor.  I am incredibly grateful that it is through her I am working for something bigger than myself.  And I know all of the girls who work for the foundation feel the same.

On behalf of a little girl who should have been 14 tomorrow, thank you for supporting her foundation.  Thank you for helping us continue her legacy and do something big for other kids fighting cancer.   If you knew Isabella or simply have followed her story… comment below with your favorite Isabella memory or how she has impacted your life.  

-Rachel Wood, ISF Director of Marketing

We are still raising funds for Isabella’s Wish Fundraiser to help fund a wish for another child fighting cancer. Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.  Read Erin’s blog entry about visiting with Sydney, whose wish you helped us fund last year. 

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The Impact of Losing a Best Friend

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Isabella & Soleil

Saturday, March 9 marks what would have been Isabella’s 14th birthday. It’s also when the Isabella Santos Foundation is teaming up with the Community Blood Center of the Carolinas (CBCC) to host several community blood drives to honor the life and legacy of Isabella.

It seems only fitting that one of the March 9 community blood drives will be hosted by Stephanie Foreman, the mother of Isabella’s best friend, Soleil. It will take place from 10 a.m. – 5 p.m. at Overture Cotswold located at 4830 Randolph Road in Charlotte.

“This blood drive is a great opportunity to bring people together to honor Isabella,” said Stephanie. “Knowing Isabella really opened my eyes about the importance of blood donation. I learned that it’s not just for accidents, but also for cancer patients and others in our community.” 

The Impact of Losing a Best Friend

Isabella & Soleil

Soleil and Isabella became the best of friends after meeting in pre-school at age two and discovering they lived in the same neighborhood. They hit it off and did play dates, sleepovers and even combined birthday parties (Soleil’s birthday is March 2). 

“The girls were inseparable,” said Stephanie. “They were opposite and so cute together.”

Isabella’s cancer diagnosis and journey had a profound impact on Stephanie and Soleil, who had to learn at a very young age what cancer was. It became very normal for Soleil to visit and have play dates with Isabella at Levine Children’s Hospital.

The impact of Isabella’s passing still affects Soleil today who, even after seven years, still struggles with the trauma of losing her best friend. Not only did Soleil endure the split of her parents a year and a half prior, but then her best friend passing away. The once bubbly young girl became more introverted and anxious. 

Isabella’s passing also affected “Miss Stephanie” – Isabella’s term of endearment for Stephanie – who had anxiety attacks for two years. For Stephanie, it was like losing a daughter as she and “Ibba” shared a close bond. 

Isabella & Miss Stephanie

The Healing Process

With therapy and loving guidance from her mom, Soleil is communicating better, is more open to volunteering at ISF and is excited for the March 9 blood drive to honor her best friend. Through events like the blood drive, Soleil is able to see how much good has come from Isabella’s life.

Stephanie and her girls, Soleil and Ciel, have remained involved in ISF since its inception from participating in the race and volunteering. While Stephanie has been a loyal blood donor, she wanted to do more by hosting this community blood drive to honor Isabella and to help others. 

“The ISF team amazes me and I am so proud of them. I remember when this all started. To see where the organization is today is unreal with what they have done and what they are doing,” said Stephanie. “It takes away the pain in my throat when I see ISF’s accomplishments and how they are carrying on Isabella’s legacy.”

CBCC will also be raffling off $100 gift cards to donors who schedule their March 9 appointment prior to the day of the drive. Schedule your appointment online for all locations or call 1-888-59BLOOD.

Honor a Cancer Fighter’s Life Taken Too Soon

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Isabella passed away at 7 years old from neuroblastoma, if she was here today she would be turning 14 on Saturday. She would be in middle school. She would most likely be into boys. She would be fighting with her siblings at home and meeting friends at the movies.  There is no question Isabella’s life was cut too short, but there is also no question that her legacy is creating hope for so many.

Please join us in honoring Isabella’s life this month: 

DONATE BLOOD:  Make your appointment for March 9th, our largest blood drive ever with Community Blood Center of the Carolinas. Locations throughout the greater Charlotte region available.

DONATE TO ISABELLA’S WISH FUNDRAISER:  Help us fund a wish for another child fighting cancer. Did you read Erin’s blog post about meeting with the Make-A-Wish child we helped fund last year?

EAT SUBS:  Eat at Jersey Mikes all month long. Plan on joining us March 27th for Day of Giving when 100% of proceeds come back to ISF. 39 locations to choose from across the greater Charlotte area.

Isabella Santos Foundation’s Executive Director Receives Women in Business Honor

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“Don’t let something horrible in your life define you. When people meet me they say, I can’t believe you have a child who passed away from cancer, and I take pride in that. Because it doesn’t define who I am. It’s just part of who I am.”

Congratulations to our always real and never boring leader, Erin Santos, for being a recipient of the Charlotte Business Journal’s Women in Business award last night. She might have cussed a bit on stage and she rarely apologizes for ‘being aggressive’ for those fighting cancer… but we are so proud that she won’t stop pushing the needle for kids fighting cancer.

DWTS Blog #4: Why did I sign up for this again?

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Written by Erin Santos, ISF Executive Director & President

My current state

Well, here we are.  Dancing With the Stars tickets are sold out, votes are rolling in and by this time next week, I will be back to a normal life.  All these weeks I have been saying that I am not too nervous about the actual dancing part.  That’s now a lie.  The anxiety is setting in and my stomach is in knots.  I didn’t start the week out that way – but as each day passed… the knot begins to grow.

Saturday – my Mom is in town and the plan was for her and Sophia to join me for dance practice.  In true Santos children style, they are bored with every cool experience I’m a part of because they have grown numb to it, so she chooses a morning on her iPad instead of heading to the ballet to watch.  Whatever.  My mom joins me and sits quietly in the seats and Juwan and I kick through the moves.  I notice she is taping a couple of the segments on her phone which I plan to watch later.  Turns out watching it as soon as we get in the car scares the shit out of me because some of the moves I’m doing just look straight stupid.  Yikes.  I’m two weeks out.  I’m better in my head than I am on stage.  

Tuesday – our normal Tuesday practice and we are fixing small pieces that aren’t working.  I’m still working on adding that flare that feels completely dumb when I do it, but I know it comes across better on stage.  I can tell Juwan is wanting more from me and I’m having trouble giving it for some reason.  It just feels weird at times.  We have a couple of tricks that we practice a couple of times to really get the feel of them.  One of the tricks is killing me and I’m not getting it right.  I’m finally nailing the backflip but I’m still doing it in tennis shoes.  We still don’t have shoes and I should be in them by now.  I’m stressing.

The AMAZING Whitley Hamlin

Friday – 12:30.  The AMAZING Whitley Hamlin (@thequeencitystyle) who has graciously agreed to help style me for the event with the help of Neiman Marcus meets us at Southpark to try on some gala looks.  My traditional look is a little short and a little tight and sometimes a little unprofessional and I love that she is taking me out of my comfort zone.  The first dress I try on takes an army to put in on me.  I’m not kidding… it’s a damn scuba suit and I almost pass out twice.  I get it on and take a look in the mirror.  It’s elegant and sophisticated and I love it.  It’s never anything I would ever wear, try on or even buy.  I turn and look at Whitley and my Director of Marketing, Rachel and it feels like I found the perfect wedding dress on the first try.  I try on about 10 more but I keep coming back to the same first dress.  I think we have a winner.  I also need to drop all alcohol, bread, sugar, and calories in the next week to pull this thing off.  2:15 practice time comes and goes and I’m super late.  The videographer from the Ballet is there to shoot some of our practice for our gala video and it freezes me up a little.  Why am I freezing up?  It’s just a week away!  I do however have a new haircut that is making me feel like a new woman – but having a stranger in the room is screwing with me.  Of course, when the camera starts rolling, I see Juwan transform into the performer he is meant to be.  He’s insanely good and at that moment I know he will carry me through this because he is professional.  He’s the best.  I have to feed off his energy.

Saturday – Just breezing through my email and see an email from the Ballet.  Turns out that Juwan and I are the show closers.  I may vomit.

Sunday – 6 more days.  After watching the video of us performing, Juwan levels with me and lets me know there are some parts that just aren’t working.  Here’s the thing.  I have to do a cartwheel twice in my performance.  I know what you are thinking… it’s a cartwheel.  But ask yourself honestly when the last time you DID a cartwheel.  Not just a cartwheel in your living room, but a cartwheel where you have to grab the back of someone’s thigh and do a cartwheel over the front of him.  Oh, and make it look graceful and point your toes and you are 42.  Juwan asks me to do a couple of cartwheels just on the stage to see if we can figure this out.  Cartwheel number one – I pull the back of my thigh and my groin right out of the gate.  I pull it so bad that I want to spend the entire rest of the practice in the tub with Epson salt.  Instead, Juwan keeps making me do them.  He is showing me how to do them with his legs that are like 5 feet long and he looks like a damn starfish but with a touch of a ballet dancer.  I’m not getting any better at them but it’s probably because I’m 42 freaking years old!  Ugh.  Okay, homework for the week – figure out how to be more flexible and also do 100 cartwheels.  Side note: the other women I’m competing against next Saturday… one is an ex-college gymnast and the other is an ex-Chicago Bulls cheerleader.  Bonus.  They are probably kicking out cartwheels for breakfast.  We run through the music a couple of times, videotaping then reviewing.  I’m gonna throw up.

My week ahead is dancing every day, finding shoes that won’t kill me, practicing in my actual dance outfit, dress fittings, dress rehearsals, primping, and anxiety.  God bless anyone that has to come in contact with me this week.  I’m going to be a disaster.  

For goodness sake – please go out and vote for me.  One vote is $1, and I would love the support this week.  

Go to gala.charlotteballet.org and select “Erin and Juwan”.  

Erin’s DWTS Blog #1

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Erin’s DWTS Blog #3