Tag Archive for: pediatric cancer

Defining Support, The Cancer Mom Series: Marianna 

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

May Executive Director Dish: Once a Cancer Mom, Always a Cancer Mom

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

“They pretend to be strong, but they cry a river of tears daily. They wish they could take the pain away from their baby and suffer in their place! They watch helplessly as disease and poisons ravage their child’s body. They hold their child’s hand as they vomit…for the 5th time this morning (its a better day!). They spend more time in the hospital (which is 3 hrs away from home ) than at home and are on a first name basis with 90% of the staff. They sign consents for their child to be poked and cut in search of the cure. They collect hair from their little one’s pillow and place it in a bag..for the 3rd time. They miss their old friends who long ago stopped calling (because they didn’t know what to say) but find comfort from their new friends who all have kids going through the same nightmare. They see the pitty in others eyes when they look at their child… The look that says, “I’m sorry, but I’m so glad it’s not me”. They hear EVERYDAY how strong they are, and how other people could not handle what they live through, but the truth is, they don’t have a choice (and they don’t feel strong at all). They have been told horrible things, by well-meaning people, who criticize them for things they could never understand. They watch their child’s friends die and know the reality that it COULD happen to them. They have been to 6 funerals this year, all children. They feel guilt when their child is doing well because so many of their friends are not. They look forward, yet dread the day the poison stops, knowing this is what is fighting the monster. They live with the fear that it could happen again, every minute of every day! They wish their child could go back to school, but not because they are ready for a break, but because ALL kids deserve to be kids! They watch as their child cried because other children (and adults) say hurtful things. They wear gloves while handling the poison that they feed to their child every night. They have to tell their child “no” when they want to play sports, play outside, go to school, go swimming or go to a friends house because their immune system is too weak and an infection could take their life. They allow doctors and nurses to do horrible things to their baby in search of a cure. They search for the reason “WHY” so that they can make some sense of this nightmare, and none is to be found. They miss their other children as they grow up without them (and the siblings are not allowed to stay at the hospital)…missing all the milestones and special occasions, while fighting for their sick child’s life….wishing they could tuck them in bed at night, but they haven’t been home in weeks or months. They don’t remember the last time they slept more than 2 hrs straight. All of this and more…all while bringing awareness and raising funds so YOUR child will never face this hell! THEY ARE THE PARENTS OF A CHILD FIGHTING CANCER! They need your help!”

UNKOWN CANCER MOM
Erin & Isabella, 2008

I remember reading this passage a Cancer Mom wrote when I was going through Isabella’s fight against cancer.  I posted it on my Facebook page and so many people thought I had written this so beautifully.  I’m sure it was because I was writing the truth every day about what our life was like and this sounds just like the hell I was living.  Truth is, it’s the life every cancer mom lives.  I have to say that I struggle daily with her being gone, but the one thing I don’t miss is the actual life of a cancer mom.  It’s the scariest life you will ever lead. I flash back to it quickly when I sit and talk with a Mom who has a child fighting.  The look in her eye is tired but thankful… it keeps me going at my job for sure.  

Often times as a Cancer Mom you just feel helpless.  You are shuffling between hospitals and medicines and your other kids and bills and a marriage, the thought of having time to do anything that brings awareness or funding to your child’s disease feels impossible.  It never failed… Isabella would always relapse right before an event.  And like every year, our supporters would rally around us and put on an amazing day and do all the things I couldn’t.  They allowed me to just be her Mom and focus on keeping her alive.  I was so thankful to all the people that were doing things to help her and kids like Isabella when I couldn’t.  

This is what ISF does today.  We are the feet on the street for the families that MUST remain focused.  They can’t scream from the rooftops about survivor rates and funding cures and bringing in the best doctors because each day they are just living in the moment… because that is the only way to survive.

So with May upon us, it brings our focus to these Cancer Moms as we approach Mother’s Day.  I can’t tell you how many Mother’s Day posts I wrote about treasuring every moment of the day.  Opening that Mother’s Day card from Isabella and the kids, hoping it wasn’t my last from her.  (I still have them all.)  We would go to breakfast and the kids would take turns sitting on my lap as I quietly said prayers that I would always have 3 children for Mother’s Day.  Unfortunately, for me and so many other Moms… Mother’s Day is spent putting on a brave face for our other kids – knowing the day will never be the same.

Erin & Isabella, 2005

ISF is putting a TON of energy into our May events.  We want to tell you the stories of these incredible Moms and we want to do all the things this month they wish they had the time to do.  We want to be their voices, reminding you all that the ONLY way we can make things better for their kids is to do something about it.  So we are going to ask you to come to our May events.  We are going to ask you to donate on behalf of these Moms this month.  Donate as it were YOUR child or someone you knew.  Set up to donate every month because you know it’s the right thing to do.  Show these Moms that we support them and we are behind them and promise we are going to do everything we can to bring the doctors and treatments to their kids so they can focus on what they need to do right now.  We are here behind them and this month, we need you to be too.  

-Isabella’s Mommy (Once a Cancer Mom, always a Cancer Mom)

**We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We want to show that ‘Cancer Messed With the Wrong Mom’ and we have their back while they do what they do best. Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients. DONATE NOW

The ISF Skinny – April 2019 Edition

April Executive Director Dish

March is always a big one for us here at ISF.  Isabella’s 14th birthday would have been March 9th and each year we try to think of new ways to honor her but also do it in a way that is respectful of the day.  I’m always anti-birthday cake and a Happy Birthday song on that day and as many of you know – I stay far away to preserve my own heart.   I personally always think blood drives are the way to go.  What better way to honor a life, than to give a life?  

Our relationship with the Community Blood Center (which will be changing their name to “One Blood”, but same community mission and same team) is stronger than ever.  One of the big things I’m working on this year is defining the meaning of PARTNERSHIP.  I saw a quote once that has just stuck with me…

“If you want to go fast, go alone.  If you want to go far, go together.”

Our partnership with CBCC is one of our favorites because we believe in each other’s missions and want to do everything we can to make each other a success.  It really is like a family dynamic for us, much like Levine Children’s Hospital.  So what better way to celebrate Isabella, than with our family?  I loved watching the social media from afar (yup, I got the heck out of dodge).  Of course, we have our old school ISF supporters who have been there from the beginning, but I loved seeing the new wave of ISF sitting in those donations chairs.  I know the lines were long and I can’t tell you how much I appreciate each and every single person who took the time to give.  In all, 239 units were collected and 717 lives were impacted.  I mean… come on.  That’s insane.  I truly can’t express how much this personally meant to me. My goal is to one day have a 500 unit drive and I’m thinking 2020 is our year. 

Speaking of the blood center, my Marketing Director Rachel Wood and I boarded a plane for DC last month as I was honored with a national award from the American Blood Center.  It was such a humbling experience receiving the Larry Frederick Award for our commitment to raising awareness for the need of blood donation.  Larry was there to introduce me and watching him raise a picture of my daughter on stage to a silent room really broke my heart.  Larry was so touched by her story and the people that we met that evening were amazing.  Thank you to Marin Grable and his team for the nomination.  It really was a beautiful evening.

Right off the plane and right into the Jersey Mike’s Day of Giving.   Speaking of great partnerships.  Boy, do we appreciate our Jersey Mike’s partnership!  The team did such an amazing job of spreading the word and wow did our supporters deliver.  Last year we raised just over $135,000 and this year we blew it out of the water raising just over $167,000 for ISF.  The owners of Jersey Mike’s and their staff rocked it out that day in their Cancer Messed with the Wrong Team shirts.  You had to be living under a rock to not see your social media channels flooded with subs.  We love partners in the community like this who understand the importance of giving back.  What an impact they made in one single day on top of a giving month as well.  Unreal.

As you know, one of my other philosophies at ISF is to “Work Smarter.  Not Harder.”  For this reason in 2019 we really narrowed our focus to Charlotte.  We dropped some of our expansion events that were successful, but lots of work and travel.  Instead, we are looking to grow our reach in the Charlotte community.  I feel like the impact we are making here in Charlotte at Levine’s over the next 5 years should be something every single Charlottean should care about – so we are focusing on you.  And not to mention what having a successful nation-wide known rare pediatric cancer program in our city… who and what that will attract.  Simply put, we are working to help make our city better.  For that reason, our May event calendar is slammed.  

Our traditional Coffee for Cure events are being revamped.  As a non-profit, it is important to keep those events new, current, and relevant.  So we have a host of events coming up in May geared around Moms.  Cancer Moms are handed one crappy deck of cards in life and the amount of time they have to spend keeping their children alive doesn’t leave much time left for them to also find a cure for their disease.  So we are working in their honor in the month of May and letting you know how Cancer Messed With the Wrong Mom.  We are not only supporting the Moms who are fighting for children but also funding research so desperately needed for their rare cancer patients. Take a look at the May Garden Parties and let us know if you want to join.  So many of you understand the importance of what we are doing and we need your support.  Attend the events if you can, bring a friend to introduce her to ISF, donate in honor of a Mom, donate in honor of a child.  We just ask that you do something with ISF in May to make a difference.  These kids (and Moms) need your help.

Also, all of these May events have expenses associated with them and we would LOVE to cover them through the generosity of sponsorships.  Thank you to Pure Intentions Coffee who will be providing coffee for all events! Owner, Matt Yarmey, is on our Board of Directors and takes his role in our Charlotte community serious. We love how he has jumped in to help us make a difference. If your business is looking to get in front of the amazing philanthropic community of women in Charlotte, please email me, I would love to talk to about how your business can become a “partner” of ours.  You know we believe in growing great partnerships!!!  

Whew!  That was a busy month!  I feel like I say that every month though.   We hope you all have a wonderful spring break this month and come back energized for the big May events we have coming up at ISF.  And again, thank you for all the support you provided in March that allowed us to have one our best months to date.  You guys are the best. 

Erin (Isabella’s Mommy)


Another Year Older She Should Have Been

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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