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Isabella Santos Foundation Donates $650,000 to Levine Children’s

On December 23, 2019 our foundation was proud to end the year by presenting Atrium Health’s Levine Childrens Hospital with a donation in the amount of $650,000. This donation will benefit the ISF Rare & Solid Tumor Program at the hospital. The program will oversee care for all solid tumors, rare tumors, MIBG therapy and all related clinical and scientific research at the hospital.

Left to Right: Dr. Oesterheld (LCH), Erin Santos (ISF), Karen Murphy (ISF), Dawn Bartock (LCH), Rachel Wood (ISF), Kayla, Merritt & Aaron Plummer (Rhabdomyosarcoma cancer family)

We lost two very special souls recently. In November Corey Morgan lost his battle to Ewing’s Sarcoma at 20 years old. Just two days ago Madison Fedak lost her battle to Osteosarcoma at 7 years old. It’s just not right. So today we made this donation in their honor. They inspire us to keep going. To do more. There has to be more options for kids fighting rare pediatric cancers and we are determined to increase survival rates. We just wish we could have done more in time for Corey and Madison.

Thank you to everyone for supporting us this year. Thank you from the bottom of our hearts. We can’t make a difference and change outcomes for kids fighting cancer without you. This donation was made possible due to your support. 

We are so sad… but we are equally as mad. Our fire is lit. Watch out 2020 we are coming for you and ready to do more.

Pounding for Parker

Parker and his brother

It’s no wonder why so many people are pounding for Parker. His strength, resiliency and determination are such an inspiration.

Parker was nearly seven years old when diagnosed with a very rare tumor on his spine. His cancer, which originated between one of his vertebrae, runs from his tail bone up into his lower brain. Because the tumor was mixed in with nerves in his spinal column, it was too risky to remove. So Parker underwent two different types of chemotherapy, which he completed in May 2017.

He also has more nerve damage in his left hand, but doesn’t let that stop him. Today, the fun-spirited nine-year-old is in third grade and has resumed school and his favorite sport – lacrosse. As part of his ongoing therapy, Parker continues to get monthly checkups and quarterly MRIs at Atrium Health’s Levine Children’s Hospital.

“He’s doing really well; living life like a normal kid and being a great big brother,” said his mom, Allison. “He has lots of energy, a good sense of humor and is very driven.”

Pounding for Parker Foundation check presentation to Levine Children’s Hospital

Because Parker may need additional therapy in the future and that there is no cure for his disease, his parents – Allison and Jonathan – launched the Pounding for Parker Foundation in 2017. The Foundation hosts an annual golf tournament, gala and other community events to raise funds to advance research for pediatric brain tumors and improve the quality of life for childhood cancer survivors. In its first year, the Pounding for Parker Foundation presented $100,000 to the Levine Children’s Hospital Brain Tumor Survivorship Clinic.

Among the organization’s fundraisers this year is the Pounding For Parker Foundation Gala. It will take place on Thursday, October 4 at 7:00 p.m. at Sweet Magnolia Estate in Cornelius. There will be a silent and live auction, chef-prepared food stations, beer, wine and live music. In addition, the silent auction will be online starting Thursday, September 27. For more information, to purchase tickets and to check out the silent auction, visit https://poundingforparker.org/event/.

“We’re excited to be in the Charlotte community and to give back to Levine Children’s Hospital,” said Allison. “Our doctors are like family and have really been there for us. We want to do everything we can to find a cure for pediatric brain tumors and come up with solutions for the many issues that pediatric cancer survivors face.”

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.”

Looking Back: 1st Annual Isabella Santos Award

Caring. Compassionate. Leader.  At the end of March we will be giving away the 5th Annual Isabella Santos Award.  Each year we recognize someone in the community who lives a life with the same dreams and aspirations as Isabella and who is trying to make a difference in the world.  Help us celebrate the past winners over the next week.

1st Annual ISF Award, Chrissy Bush (2013)

If you know Isabella’s story well, you know the name Mrs. Chrissy.  Mrs. Chrissy was Isabella’s best friend.  Her quiet giving blew us away over the years from afar.  For years, Mrs. Chrissy would get up at 5am to cook for the homeless on Saturday mornings, she volunteered each week at the free health clinic to assist in providing medical care for those in need, she fosters animals who need homes, she runs a diabetes camp in the summer for children and the list goes on and on.  The best thing about Mrs. Chrissy is that she never tells you that she does these things.  She does them because she honestly just has an amazing heart and wants no recognition for it.  And let’s not forget the thing that has touched all of us at ISF the most.. her love of Isabella.  She knew Isabella’s story was not going to end well but she still opened her heart to her and provided her with comfort, love and support like she were her own daughter.  For us there is nothing better than people like Mrs. Chrissy and Isabella in this world and they should be recognized for what they provide to our communities.  So many of us strive to be more like them each and every day.

 

 

 

Why We Haven’t Touched It

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 10
Why we haven’t touched it…

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She barely lived in it. It’s been vacant for 3 years now. I remember her helping paint the walls pink and purple stripes. The rollers were so big she could barely hold them up. She got her new white furniture with a side table, dresser and desk for all that homework that she had planned to do. Truth is, I can barely remember her sleeping in there. So many times she would end up in our bed due to sickness or if Stuart was traveling, not to mention all the nights in the hospital. If she slept in there one hundred nights I would be surprised.
But the room is all her. Her pajamas are still in the drawers, her dresses still hang in the closet and her shoes are still waiting to be worn. Her dresser is covered with pictures of her best friends, her family and “get well soon” cards from classmates. The bookshelves have her library books that I’m sure the Elementary school as decided not to ask for. Her desk is filled with drawings and notes that were never finished. There are beaded necklaces that we made in the hospital, seashells she collected, diaries with kittens on them and Taylor Swift CDs in every drawer you open. I have still not gone through it all because I’m always afraid of what I will find. Last year I found a Mother’s Day craft she made me at school just a month before she died that she never gave to me. That is when I just decided to close things up for awhile.


There are books out there for everything these days when it deals with children. “What to expect when you are expecting” was supposed to be the roadmap for pregnancy to follow. Where is the book on “What to expect when you aren’t expecting?” Where is the manual for parents on how to deal with things like this? I need a roadmap and here are some things I need to know…


1. What do I do with her clothes and when do I start to actually do something with them? Do I make her clothes into blankets and give them to people? Is that creepy?
2. What do I keep and what is junk? Do I keep everything that she ever wrote on? If I throw it away will I regret I did that?
3. How long do I keep this room going like this? Am I supposed to have a little girl’s twin bed in there forever?
4. If I make her room something else, what do I do with it? If I make it into another guest bedroom will people be wigged out sleeping in there? Feels even more disrespectful to make it into an office or something.
5. What do I do with her furniture? Is that another thing I will get rid of and then regret I got rid of it? I keep finding places on her furniture that she actually wrote her name on. Seriously?
6. Do I put her stuff in storage?
7. When do I do all of this? At what point is it okay to have her room still the same, and at what point does it become creepy? When will people start saying, “I think it’s time they did something with that room.” I definitely want to do something with it before that conversation starts happening.


All these counselors will tell you that this stuff should be done whenever you are ready. There is no timeframe that should occur. But there has got to be. There is definitely a line out there in the universe that you cross too soon or too late. It still feels too soon to me because every season I think I can tackle clothing and I just crumble. But, I know it all can’t stay like that forever. It eventually will need to be tackled, just not sure on the rules for this stuff.

-Isabella’s mommy


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