Tag Archive for: pediatric cancer in charlotte nc
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.
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.”
