June Executive Director Dish

Wow.  Running a little late this month.  Every month seems to fly by faster and faster.  Our May was full of events that kept us busy and like most events, they drain us, so we take a little time after to recoup.  I loved everything about May as we turned our focus to the Moms who are currently in the fight of their lives with their children and their stories.  I think sometimes we forget just how many families in this area need us.  Our Defining Support, The Cancer Warrior Mom Series was one of the best series we have done to date.  We asked these Moms to talk about their struggles, how they define support and what organizations like ours mean to them as they go through treatment.  If you missed it – catch up here.

Our coffees also had a completely different look and feel this year.  We moved our location to the Duke Mansion and the days couldn’t have been more beautiful.  The sun was shining, the mimosas were flowing, and the inspirational stories were on point.  I loved seeing new faces in the audience and love the opportunity to share who we are and what we do with new people.  Our theme of the mornings resolved about Nurse Sarah who shared her story of how she was a 2-time childhood cancer survivor and how lucky she was to have the treatments she needed to ultimately find her cure.  She has gone to become a pediatric oncology nurse here in Charlotte and just a few months ago, she and her husband were blessed with their first child.  I sat and listened to her read her Mother’s journal entries from when she was in treatment and it brought back so many memories for me of how scary that time in my life was.  It reminded me of how lucky I was to have people advocating and supporting for our family when we didn’t have time to ask.  We all need to remember these families are counting on us to be their soldiers in the street, because they have more important things to worry about… their child.

And now here we are… June.  Kids are out of school.  Life seems a little quieter, but we still have a important milestone ahead.  On June 28th, Isabella will have been gone for 7 years.  This is crazy to me because she was only 7 when she passed away.  Her legacy is now longer than her life.  As always, I find the best way to experience this day is to partner with One Blood (formally CBCC) and ask for you all to go and donate blood, especially platelets in her honor.  Summer is the slowest time of the year for blood and platelet donations and they need your help.  Our platelet drive runs from this Sunday, June 23 through Saturday, June 28th, please honor her life and schedule an appointment.  Post a picture of yourself on social media – I follow along quietly that day and love seeing all of you who take the time.  It means so much to me.

Now, let’s talk about something exciting. First, we have a new presenting sponsor this year, RedVentures! Their energy is off the charts, we can’t wait for you to feel it! Second … who loves brunch?  Um… everyone.  How does Firebirds + Tito’s Vodka + NoDa Brewing sound? These companies (and our first ever brunch sponsors) love to give back to the community and are ready to provide you with the yummiest of yummy goodies and drinks on race day.  We know what works at our race… our 5k is fun (the 10 is tough), the kids zone is killer, the auction and raffle are like no other so why not make the day just a tad more fun for everyone.  I know nothing tastes better to me after a hard run like a bloody mary so let’s combine the two.  

You’re going to start seeing the Run and Brunch everywhere.  And it’s going to have a different look to it so it’s going to catch your eye.  Register before July 1st and you will get the brunch, and 2 drink tickets for free.  Build a team, get your whole neighborhood out there.  Don’t want to run?  We don’t care!  Just purchase brunch and come out to support a good cause.  Have a seat in the shade with a drink while your kids play in the kids’ zone and you bid on something amazing by phone while you gossip with your bestie… oh and it all benefits pediatric cancer research.  Win. Win.  Run and Brunch. Let’s make this year’s event, the biggest and best we have ever had.  Be a part of it.

Special shout out to JE Dunn and Brixx Pizza for their incredible fundraisers for ISF! JE Dunn donated $15,000 and Brixx Pizza donated $10,000… prime examples of ways our community businesses are stepping up for their community. Check out how each company raised these funds, maybe it will give you an idea of how to do something similar and help us fight cancer.

Happy June… well almost July!

P.S. – don’t forget to schedule that Platelet appointment for next week!

Read ISF Skinny June 2019 Edition

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

“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