Tag Archive for: Levine Children’s Hospital

Housing Opportunity Foundation Names Erin Santos as 2018 Humanitarian of the Year

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Erin Santos, 2018 Humanitarian of the Year

Charlotte, N.C. – More than 400 Realtors® gathered Friday, Dec. 14, 2018, at the Crowne Plaza Charlotte Executive Park for the Charlotte Regional Realtor® Association/Carolina Multiple Listing Services, Inc. (CarolinaMLS) 2018 Holiday Awards Luncheon & Annual Meeting.  Members paid tribute to outstanding real estate industry leaders and association volunteers, as well as recognized the 2018 Housing Opportunity Foundation Humanitarian of the Year Erin Santos, founder of the Isabella Santos Foundation.

Erin and Stuart Santos established the Isabella Santos Foundation to raise awareness and funding for research and a cure to neuroblastoma, a rare and aggressive form of childhood cancer that ended the young life of their daughter, Isabella. During Isabella’s five-year fight against neuroblastoma, she received much of her care at Levine Children’s Hospital.  However, a number of the clinical trials and advanced treatments she required necessitated travel to larger children’s hospitals in other parts of the country.

While the Santos family had the option of seeking treatment elsewhere, they understood that there are many families who cannot travel. Children with rare forms of cancer and their families need a tremendous amount of support to stay in the fight.  But sadly, a critical lack of funding to research and treat these cancers is often not available locally, which is why the Isabella Santos Foundation was formed. As stated in her nomination, Erin Santos wanted to do something that would permanently transform pediatric oncology in our local community, and therefore the foundation grew.

Because of Erin’s vision and drive, the Levine Children’s Hospital and the Isabella Santos Foundation have partnered together to launch the Isabella Santos Foundation Rare & Solid Tumor Program with the goal of offering the most effective and comprehensive treatment available for rare cancers.

  • This life-saving program is the first of its kind in the nation.
  • The program will treat approximately one-third of the 135 new cancer patients at Levine Children’s Hospital who are treated each year.
  • A vital component of the program is MIBG Therapy, a targeted radiation treatment with minimal side effects.
  • Under the unwavering dedication and inspirational leadership of Erin, the foundation has concluded its $1 million MIBG building campaign.  The MIBG suite construction has been completed and is slated to begin serving its first patient by the end of the year.
  • Levine Children’s Hospital will now be one of only 20 hospitals in the country to have an MIBG treatment room.

For nearly 10 years, the Isabella Santos Foundation has been a driving force in increasing awareness and has donated over $2.5 million in funding.  Under Erin’s guidance and direction, the foundation hosts several special events throughout the year. Most notable among these is Jersey Mike’s Day of Giving, which involved 31 Charlotte-area stores giving 100 percent of proceeds from the day to the foundation.

“Erin has taken the unimaginable pain from the loss of a child and created something remarkable!  She truly embodies the spirit of this award,” said Association/CarolinaMLS President Jason Gentry. “The Isabella Santos Foundation’s contributions to our local community have made a tremendous impact in an effort to ensure that other families now and in the future don’t have to endure the same type of loss. Her unwavering commitment should serve as an inspiration for us all to do more to effect change.”

As the Housing Opportunity Foundation’s Humanitarian Award winner, Erin Santos received a commemorative crystal award and the ability to designate a charity of her choice to receive $5,000 from the foundation. The Isabella Santos Foundation will be the recipient.

About the Housing Opportunity Foundation
The Housing Opportunity Foundation is the charitable arm of the Charlotte Regional Realtor® Association.  The foundation works to create a community where all housing needs are met, and its mission is for Realtors® to create housing opportunities through advocacy, education, funding and leadership.

For more information, about the Association or the Foundation visit www.CarolinaHome.com. For interviews, please contact Kim Walker.

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For Children with Cancer, Building a Room With a View to a Better Future

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Originally published on Atrium Health’s Daily Dose

Opening one of the country’s few lead-lined rooms to treat rare cancers, Levine Children’s Hospital will soon change the landscape for local cancer care. And Charlotte can thank one little girl who inspired a community to build hope for kids like her.

Toward the end of her fight against cancer, 7-year-old Isabella Santos received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday spent with her family.

Back in 2011, Isabella had to leave her hometown of Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. But today, thanks to the foundation created in Isabella’s honor, children from Charlotte with rare types of cancer can stay close to home to get this cutting-edge treatment.

Levine Children’s Hospital, backed by a $1 million grant from the Isabella Santos Foundation (ISF), will soon open its own MIBG therapy suite – and become one of a handful of children’s hospitals in the country to have one.

This room “is really going to change the landscape” of local cancer care, says Javier Oesterheld, MD, medical director of the cancer program at Levine Children’s. An MIBG room can not only treat children with neuroblastoma – the type of cancer Isabella had – but also be used in advanced clinical trials to test new products on different types of cancers.

“We’ll really be ready for the next wave of clinical medicine,” says Dr. Oesterheld, who also treated Isabella.

A room like no other

LCH’s room has been designed to offer the best patient experience possible. The room is actually a suite – with a separate space where a child’s family can stay overnight.

During Isabella’s MIBG treatment at the out-of-state hospital, her mother Erin stayed in the same room with her and was exposed to a large amount of radiation.

“I felt extremely exposed at the time during the treatment,” says Erin, who is the co-founder and president of ISF. “Of course, I was willing to do that for my daughter, but I feel like keeping the parents safe should be as important as keeping the patient safe.”

The room at LCH will be one of the safest in the nation. More than 20,000 pounds of lead will separate the patient’s room from other parts of the suite.

Despite this physical barrier, the room will have several features that keep patients and their families connected. A lead-lined window will allow them to see each other directly. And an advanced audio-visual system will allow nurses and family members to monitor patients at all times – and even have a little fun.

“We’ve been able to let the parent and the patient play video games together from separate rooms. We have a great audio system where they can constantly hear each other,” says Dawn Bartock, CPNP, MIBG therapy clinical lead and pediatric nurse practitioner.

Erin Santos also wanted the room to reflect Isabella. Her artwork graces the walls, and the ceiling features twinkling lights and a shooting star.

“Every time I visit the suite, I can feel Isabella’s presence,” says Erin.

Community support changes everything

Although ISF has supported individual clinical trials and paid for LCH staff in the past, the MIBG room represents the foundation’s most significant contribution to date.

The room has been on Dr. Oesterheld’s “wish list” for a long time, because he knew how much it could improve care for his patients. And he’s certain it couldn’t have happened without ISF’s tireless fundraising in Charlotte.

“I think it’s monumental that our community has come together to make us the top pediatric cancer program we are,” says Dr. Oesterheld.

And more help is on the way. Earlier this year, the ISF pledged $5 million to create the Isabella Santos Foundation Rare and Solid Tumor Program, which will expand the hospital’s pediatric clinical trials and recruit a national expert on pediatric solid tumors as its endowed chair.

But the room is a tangible – and emotional – first step to improve the lives of so many patients.

“To think that Isabella will almost be gone longer than she was alive… what an incredible impact her seven years of life has provided for other families. I’m extremely honored that this is being built. I’m so proud of it,” says Erin.

Buy a Christmas Tree to Chomp Childhood Cancer

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When you get ready to buy your Christmas tree this season, look no further than The Adam Faulk Tanksley Foundation Christmas Tree Lot in Waxhaw. For the past seven years, the foundation has hosted the tree lot with 100 percent of the proceeds supporting Atrium Health’s Levine Children’s Hospital.

Located at 8500 Rea Road (corner of Rea Road and Crane Road), the Christmas tree lot will be open Thanksgiving Day until Friday, December 21: Mon.-Fri: 5:00-9:00 p.m. and Sat.-Sun. 9:00 a.m.-9:00 p.m. There will also homemade wreaths available for sale.

“This tree lot has truly been a wonderful experience for us and the community,” said Sharon Tanksley, Adam’s mom and executive director of the foundation named in her son’s honor. “Several local high school baseball teams volunteer and get community services hours. We feel so blessed to have such true volunteers and customers support the tree lot and our mission.”

The Christmas tree lot is the biggest fundraiser for The Adam Faulk Tanksley Foundation and raises approximately $75,000 each holiday season. The trees come from the North Carolina mountains courtesy of The Blair Mills Foundation. The organization’s “Angels Among Us” was created for a young girl named Blair Mills who fought neuroblastoma years ago and passed away after a long and hard battle with this cancer. The Blair Mills Foundation continues, in her memory, to fight by providing fresh cut Frasier Fir trees to four lots for Hometown Heroes and a lot for Adam Faulk Tanksley Foundation. 

“In collaboration with these foundations, we want to give children and families who are fighting cancer the hope of one more day, one more Christmas and a cure for this horrible disease,” said Sharon. “Please get your tree from one of these locations and enjoy your Christmas this year knowing that you are contributing to children and families in efforts to win the battle against childhood cancer.”

Adam is a 10-year cancer survivor. In January 2008, he was diagnosed with Stage IV Anaplastic Wilms’ Tumor, an extremely rare childhood kidney cancer with unfavorable history – just a 25% estimated cure rate and 80% relapse probability. In addition to his cancer treatment, Adam also had part of his lung removed. Today he is cancer free and doing great. While he only has 50-percent lung capacity, that doesn’t stop him from being active and playing sports. Now a 14-year-old freshman in high school, Adam recently received his black belt in karate, does kickboxing and plays baseball. 

The Tanksley Family relocated from Charlotte to Easley, SC in 2014, but come back to Charlotte for their LCH visits and to help at the tree lot. Adds Sharon, “Each holiday season we look forward to the tree lot, which is one of our favorite Christmas traditions and has such a good feel and vibe. This is a great opportunity for everyone to come together to Chomp Childhood Cancer.”

Big Heroes Come In Small Packages

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Madison and mom Laura

*UPDATE 2/25: After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric cancer, Madison received the news she has been fighting so hard for at her 3 months scan. She beat cancer. She will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer free!

Oh, and she got a puppy! Oakley, a black Goldendoodle!

Madison was diagnosed this past April with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy. 

A Community of Support

Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week. 

“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”

Chef Madison

Team Madison

For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including: dance classes, swimming and learning how to ride her bike.

In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations. 

“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”

Madison and sister Riley

Levine Children’s Hospital Receives $100,000 Check from Isabella Santos Foundation

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The ISF team gets decked out in costumes to kick off October and to present another $100,000 check to Levine Children’s Hospital

The Isabella Santos Foundation helped Atrium Health’s Levine Children’s Hospital kick off October by getting decked out in Halloween costumes and by presenting another $100,000 check to the hospital.

The Isabella Santos Foundation’s $1 million commitment to Levine Children’s Hospital started with MIBG therapy and grew to the vision of building 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.

“As we get closer to the opening of the Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s Hospital, the impact of our donations is getting real,” said Erin Santos, Executive Director and President of the Isabella Santos Foundation. “We value our partnership with Levine Children’s Hospital and appreciate our incredible supporters for making this donation possible. It’s very rewarding to know we are making a huge difference for kids with cancer in our surrounding communities.”

About Atrium Health
Atrium Health, previously Carolinas HealthCare System, one of the nation’s leading and most innovative healthcare organizations, provides a full spectrum of healthcare and wellness programs throughout the Southeast region. Its diverse network of care locations includes academic medical centers, hospitals, freestanding emergency departments, physician practices, surgical and rehabilitation centers, home health agencies, nursing homes and behavioral health centers, as well as hospice and palliative care services. Atrium Health works to enhance the overall health and well-being of its communities through high-quality patient care, education and research programs, and numerous collaborative partnerships and initiatives.

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for neuroblastoma, other rare pediatric cancers, and charities that directly impact the lives of children with cancer. ISF was founded in honor of Isabella Santos from Charlotte, N.C. who lost her battle against neuroblastoma. ISF works to improve rare pediatric cancer treatment options in an effort to improve the survival rate of kids with cancer. For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation) and Twitter (www.twitter.com/TheISFoundation).

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