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Tribute. Legacy. Honor

This picture was taken on the morning of December 23, 2019 as we presented $650,000 to the Levine Children’s oncology team.  This particular morning was incredibly special to me for several reasons, not only because of the big dollar signs.

Many of you know, I lost my mom suddenly on November 3rd, to ovarian cancer. The holidays were thrown right on top of that, so these last few months have rubbed my family raw. The outpouring of love and support has been overwhelming with almost $10,000 donated to ISF in honor of my Mom.  Amid so much pain and grief, each donation brought a little unexpected joy to our broken hearts.

My family was in town for the holidays, so I asked my Dad to go with the team up to the hospital to present this check.  Afterall, almost $10,000 of that check included all of Mom’s tributes we received at the end of the year. I also thought it would be great to show him the place and the people I work so passionately for, day in and day out. Dad was thrilled and asked if we could head up a little early to visit with Merritt and her parents since they were in clinic that morning.

Why did my Dad want to visit with Merritt and her family?  He wanted to personally say ‘Thank You’ to them for attending my Mom’s Celebration of Life.   To say, ‘Thank You’ for driving 10+ hours round trip across the state for a woman they have never met. To say ‘Thank You’ for honoring her and paying tribute to her. And to say ‘Thank You’ for supporting us. It was so thoughtful that they took the time to support our family during such a difficult time. 

Thinking back to December 23rd as being incredibly special, is an understatement. For me it signified strength, healing, love, guidance, family, encouragement, lasting legacy, change and so much more.  A full circle moment for us celebrating my Mom’s life in a special way and giving my Dad the opportunity to say ‘Thank You’ to a cancer family I support… that is now supporting us. In hindsight, it would have meant the world if my Dad was in the picture with us, but just his being there meant everything.  

Tribute. Legacy. Honor… all words you will hear us say A LOT this year at ISF.  We are so excited for what’s to come, because every move we make in 2020 will be in honor of someone special.  We want to help turn all the pain into change for kids fighting cancer.  

Together we can help kids Beat Cancer, Grow Hair,  and Live Their Dreams.

Much Love,

Rachel, ISF Marketing Director

An Army of Support

Emily and Kevin know firsthand the impact an army of support can provide a family during a crisis. Their daughter, Claire, was 19 months old when she was diagnosed with Stage 4 neuroblastoma in 2011. They received an incredible outpouring of support and wanted to do the same for other families fighting childhood cancer. So they created Claire’s Army to honor Claire – who passed away in January 2012 – and to continue her legacy of her love for others.

Claire

“Our friends, family, employers, strangers and the hospital teams did so much for us during Claire’s treatments and our time of grief,” said Emily. “We wanted to do for others what others did for us.”

Through Emily and Kevin’s grief counseling at KinderMourn, time spent with other hospital families and discussions with medical providers, they realized that not everyone had support when going through a similar situation. This led to creating the following core programs at Claire’s Army:

CLAIRE PACKAGES: Claire’s Army provides a package to a new family facing a childhood cancer diagnosis at Novant Health Hemby Children’s Hospital and at Atrium Health’s Levine Children’s Hospital. The Claire Package utility tote includes towels, a journal, a gas card and additional comfort items. Valued at $150, the package helps make a family’s hospital stay more comfortable and saves them a trip to the store.

MEAL PROGRAM: Claire’s Army has several restaurant partners and a team of volunteers to deliver made-to-order meals to families at Hemby Children’s Hospital five nights a week. Their goal is to expand to Levine Children’s Hospital in the near future. Since starting this program in February 2014, Claire’s Army has delivered 4,000 meals, which offset a financial burden, provide options beyond hospital food and foster family time.

EMERGENCY ASSISTANCE PROGRAM: Claire’s Army works through oncology social workers to pay for bills to help families who are suffering financially. Emergency assistance can range from mortgage/rent payments, utilities and travel needs to insurance. In one case, Claire’s Army was able to purchase an airline ticket at the last minute for a grandmother to fly roundtrip from El Salvador to attend her grandson’s funeral service. To date, the organization has provided nearly $30,000 of emergency assistance through this program.

“We want to be able to help in any way we can and to make an already awful situation suck less,” said Emily who also spent a few years as a nurse assistant at Hemby Children’s Hospital. “As a hospital provider, it was heartbreaking to see what families go through during a diagnosis, especially if the family was alone with no other support.”

Claire’s Army hosts an annual gala – which raised $200,000 this year – and other fundraisers throughout the year. Funds support these core programs, as well as pediatric cancer research through nonprofits like the Isabella Santos Foundation.

“Claire’s life was very brief, but very impactful,” added Emily. “We hope that the work we are doing is an extension of our love for her and her love for others. We want to carry that on and help these families one at time.”

Mother-Daughter Duo Making a Difference

Charlotte and Jennifer Gaston

Charlotte Gaston was just 11 years old when she got involved in the Isabella Santos Foundation. Her mom, Jennifer, was serving on the ISF 5K/10K for Kids Cancer marketing committee and brought Charlotte to a meeting. It was there that Charlotte shared some great ideas and was asked to join the committee.

Since getting involved in 2012, Charlotte has volunteered on the marketing committee and at the race, run in the event, and used her creative skills to fundraise for ISF. She made earrings and hair ties to sell for donations for ISF, and painted a canvas at Bella’s Birthday Bash at Small Hands Big Art. The painted canvases from the event were used in various ISF events throughout the years.

“I was just along for the ride with Charlotte’s great ideas that she brought to the table,” said Jennifer. “Charlotte and I have volunteered, distributed race materials to retail stores and have done her projects together. Sharing this experience with her has been very rewarding.”

Charlotte also helped coordinate ISF’s T-Shirt contest where she brought together students from area high schools to collect the entries and select the winning design, which was featured on the kids’ race shirts. In addition, she assembled bracelets for ISF’s Coffee For A Cure.

“It is so cool seeing how much the Isabella Santos Foundation has grown and the impact we have all had over the past six years,” said Charlotte who is now a senior at Ardrey Kell High School. “I want to stay involved as much as possible this year before I head off the college.”

Jennifer also continues to stay involved as a volunteer for the race and Coffee For A Cure, and is passionate about introducing her friends to ISF. “Volunteering with the Isabella Santos Foundation has been a great experience for both of us and has helped Charlotte see what an organization like this is capable of with the support of a lot of people,” says Jennifer. “This experience has been very meaningful and will help her in college about how to get involved and make a difference.”

Let’s Become a WishMaker Together in Honor of Isabella

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday in the month of March.

Please donate to help make Sydney’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

DONATE HERE

Throughout the month, we will be sharing more about Sydney and memories of Isabella’s wish.  We hope you will follow along on our social media pages:  Facebook, Instagram, Twitter

Make-A-Wish creates life-changing wishes for children with critical illnesses.  Isabella’s mom shares the difference Make-A-Wish made in not only Isabella, but the entire family.  

“We even decided to take her there just a couple of weeks before she passed away. Make-A-Wish has made this place the one place in the world that brought her the most happiness. We saw the impact that a wish trip had on her mental and physical state, as well as the rest of us. It made miracles happen for us – so many times.” -Isabella’s Mom

Read more from Erin Santos,  It Made Miracles Happen For Us  

New Year, New Look, New Life

Written by Erin Santos, Isabella’s Mommy

January 1st, 2018 just seems unreal.  What seems more unreal is 10 years of ISF behind us.  We started out that first year when Isabella was diagnosed and raised $7,000.  Our 2017 books are closing and we hit the goal we had in place of 1 million dollars raised.  Unbelievable.  It makes me wonder where this little “project” of ours is going to go.  With an even bigger goal in 2018, as well as a new treatment room in construction, in her name, opening its doors later this year, I know there is so much more ahead of us to accomplish.

With growth, comes change… some good and some bad.  Isabella will always be the true Founder of this organization and her face will forever be tied to all we are doing.  However, as a growing foundation, we have realized that giving in her honor the last couple of years has propelled us to success we never would have imagined.  But now, we want to refocus our organization on the children we are trying to save today.  I have always said there is an Isabella in every city.  And as we expand into new cities and markets, it is becoming painfully obvious that there are children everywhere who are in the fight of their lives.  We want to start introducing you to these children, their families and their stories.  They need your help to fight this disease that still has a survivor rate that would break any parent’s heart.  We also want to start educating our supporters on other rare cancers that can benefit from the treatments we are funding.  Neuroblastoma is scary, but there are other cancers out there with ineffective treatments and without organizations like ours in their corner, kids have very little chance for a cure.  Every child’s life is worth saving and we want to spread our wings a little more with your help.

I’m excited about the upcoming changes in our focus because even I need to put my memories of Isabella in a safe place.  For years I told myself that we were different.  We could handle loss and turn this horrible tragedy into something that could potentially change the lives of others.  While we are doing this, unfortunately, it came at a price.  Death changes people and we are not exempt from this.

I always look back at the person I was before cancer, during cancer, and even during her death.  I’ve referred to it as a movie I watch because that person seems unrecognizable to me now.  Her death has made me independent and strong, focused and determined.  But it has also made me closed off and cold at times.  I can be a hard person to get to know because her death has built a fortress around me.  I find solace in being alone, my anxiety can take me over completely and I find at times that I want to run from everything.  While losing a child makes you realize how important every minute is with your other children, sometimes it comes at a price to others in your life.

I don’t know why we hurt the ones we love the most.  We just do.  And sometimes we can’t stop doing it.  Death changed me a lot, and it changed Stuart too.  The person you once went to battle with becomes the new battle.  You find yourself just trying to get through the day and the other person becomes the casualty of this.   One thing remained consistent through our grief, our love for her, our kids and all that ISF is accomplishing.  But, I think we have just hit a time in our life when we want to find happiness again, and sometimes that happiness isn’t together.

While I feel like this is a very personal subject, I have never shied away from my life being an open book.  I felt like it was important to let the supporters of ISF know that nothing is changing with ISF.  Even though Stuart and I are no longer together, we still stand together and will do everything we can to continue to grow the foundation and make a difference in her name.  I love when we are together at an event and people say to me, “You would never know about the changes behind the scenes in your family.  You guys seem stronger than ever.”   Maybe because the love that kept her alive for so long will always be there for each other because we know the other one has been to hell and back.  There is too much history to be any other way.  So that is all you will see.  We will always be together for her.

We hope these changes will not impact the support for all we are doing together.  My belief is this is just a new start to a big year ahead and we are so proud of what we have accomplished.  This is just the beginning… maybe just a new beginning.