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Defining Support, The Cancer Mom Series: Melissa

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

Kids Helping Kids

Addison Ficker, Isabella’s Dream Team

Blow out some candles and have a piece of cake!  It’s our youngest Dream Team member’s birthday!  Happy 12th Birthday Addison! 

What an honor to have Addison as a part of the ISF Dream Team.  She started running in 3rd grade through her elementary school.  Ever since, she has participated in several 5K races, pushing herself to beat her previous time.

Addison and her family volunteered at the ISF 5K/10K race last year, and they were amazed at how ISF was making a difference in our Charlotte community.  During this same time, a dear family friend, Noah Hays (#noahstrong), was battling cancer after being diagnosed at the age of 15.  Witnessing this cancer fight was tough for Addison, and she wanted to find a way to help with pediatric cancer.  

Addison learned about the ISF Dream Team and she thought this was a perfect fit for her to run and give back.  The Dream Team combines her love of running and helping others.  She wants to do whatever she can to help raise money because “no one deserves to have to go through what he (Noah) went through.”

Addison is training for the ISF 10K on September 29th.  Through her training, she has received support from friends and family through donations.  She and her friends recently raised over $100 at a neighborhood lemonade stand they organized.  Her family also hosted a hot dog cookout that raised over $500.  

We are truly amazed at your dedication Addison!  Happy Birthday from the Isabella Santos Foundation and the ISF Dream Team.

Inspired to help support Addison?  Click here to make a donation to her fundraising page.  

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte pediatric cancer community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.

Committed to Improving Pediatric Cancer Care in Charlotte and Beyond

Isabella Santos Foundation

Press Conference News coverage  |  Press Conference Video

Today we announced  the largest commitment we have ever made. We are a bit scared. Very emotional. The Isabella Santos Foundation commits  $5 million to establish The Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital.  This program will oversee care for all solid tumors, rare tumors, MIBG therapy, and all related clinical and scientific research at LCH.  We are ready to take that next step by creating a rare and special pediatric cancer program that will be the first of its kind in the United States.

We might be scared. We might be emotional.  But we feel… Energized. Hopeful. Determined. Grateful.

Our partnership with LCH will allow us to continue the legacy Isabella left.  Isabella’s motto was: Beat. Grow. Live.  “Beat cancer, grow my hair, live my dreams.”  The foundation in her name dedicates itself to broadening that, so that other kids fighting cancer may Beat (the odds), Grow (awareness), and Live (without fear).

During the LCH press conference today for the partnership announcement, Erin Santos spoke about what this day means for her personally…

“First of all I just want to take a moment and thank the team of ISF that is with me today.  I always say after events like this to remember, every time you hear the word “Erin” it really means us.  I am nothing without all of you standing next to me and none of this would happen without the people here today.

October 6th, 2007 – this day has always meant something to me because it was the day my life changed forever.  My 2-year-old daughter was next to us in pigtails – wearing a pink t-shirt with a mermaid on it that we bought her at the Fort Fisher Aquarium that summer.  We weren’t sure what we were going to be told in that tiny room but in just moments we were introduced to a word we had never heard.  Neuroblastoma.  We were quickly taken to a waiting room in clinic that would become our home for 5 years and would soon meet our new oncology family, who I still see in the audience today.  

Sure, we may of known on that day that our life would change forever.  But what we didn’t know is that the little girl that just walked through their clinic doors would change their lives forever too.  The domino effect of that day is still falling.   

I look out into this sea of faces and I see lives that will never be the same because of her.  All of the people who were there from the beginning who made my cause, their cause.  I can see kids that like her will be walked into a clinic waiting room and will see and feel this domino effect of her life due to this gift and that gives me hope and inspires us to make this commitment.

For us to take on this huge milestone with Levine, it is more than just a check.  We are not famous or wealthy – we are just normal people who are doing amazing things.  The blood, sweat and tears that we will put into raising this money will keep us up at night.   But the faith that we have in Javier, Callie, all the doctors, nurses and administration keep us moving towards this goal because we believe in you.  I know this will be one of the best things you will ever do with your life, just like us.  We are in this together and we are beyond excited to watch this program grow into something that will receive nationwide attention and bring kids from all over the country to Charlotte to have the best chance of survival.  No pressure – but I know you feel the pressure.

So thank you for allowing us to be a part of the biggest thing to happen for kids with cancer in Charlotte region and beyond.  I can’t wait to see Isabella’s name on the center that brings new hope, treatments and cures to kids with rare pediatric cancers.  The only thing better would be to have here her alongside me, but in a way – I think we all know she is.”

With this $5 million 5-year initiative, we will be changing lives.  We will be the foundation of something special.  We will have the best pediatric cancer program, right here in Charlotte, North Carolina.  And we need your help.

MORE:

The Isabella Santos Foundation Commits $5 Million to Create Rare & Solid Tumor Program at Levine Children’s Hospital

Levine Children’s Hospital gets $5M for cancer fight

Atrium Health’s Levine Children’s Hospital announce $5 million donation from Isabella Santos Foundation

$5 Million Has Been Donated to Treat Childhood Cancers by a Foundation Set Up by Parents

New specialized treatment room coming to Levine Children’s Hospital, care of Isabella Santos

Levine Children’s Hospital Gets One Of Its Largest Donations in History

$5M donation will create ‘rare and solid tumor’ program at Levine

Pediatric cancer care gets $5M boost from Isabella Santos Foundation