Tag Archive for: supporting Neuroblastoma Research

An Army of Support

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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.”

Ports, bald head and scars…

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“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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Cancer Stole My Sister

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Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Grant Santos & Greg Olsen, Coffee for a Cure Day 1. Photo courtesy of Stikeleather Photography

Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

Grant Santos & Molly Grantham, Coffee for a Cure Day 2. Photo courtesy of Stikeleather Photography

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

Thank you.

Diamonds Are a Girl’s Best Friend

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As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

Diamonds are a girl’s best friend.  Not only has Diamonds Direct stepped up to be a 2017 sustaining sponsor in an effort to support all our events throughout the year, they are providing us with jewelry giveaways for many of our events.  What girl wouldn’t love that?  Diamonds Direct has supported the Isabella Santos Foundation and Isabella’s mission to cure Neuroblastoma for years by donating jewelry to our annual 5K/10K and 1mile fun run for Kids Cancer.    Thank you Diamonds Direct for being part of the ISF family!

Diamonds Direct

Diamonds Direct’s brick and mortar locations can be found across the south and are accompanied by a personally curated online shopping experience that has been developed to deliver the same phenomenal customer service and quality synonymous with the Diamonds Direct name.

Visit the Diamonds Direct website

Bull Engineering

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As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

We are excited to have Bull Engineering aboard as a 2017 sustaining sponsor.  Bull has supported the Isabella Santos Foundation for years.  We met them when their child was in Isabella’s brother’s class years ago.  Love to see  connections and relationships grow.   Thank you to Bull for supporting Isabella’s mission to find a cure for Neuroblastoma.  We appreciate their support of our local Charlotte community.

Bull Engineering

Bull Engineered Products is a full service, turnkey injection molding source located in Charlotte, North Carolina. From design and rapid prototyping to assembly and delivery, we can manage a complete parts program and work behind the scenes to ensure that the tightest of tolerances are met. Bull Engineered Products is committed to providing quality parts at a competitive price.

Visit the Bull Engineering website