Making A Connection At Atrium Health Levine Children’s Hospital (HealthCare Design Magazine)

Originally published in HealthCare Design Magazine

Young patients undergoing metaiodobenzylguanidine (MIBG) treatment for neuroblastoma, a rare and deadly cancer that affects about 750 children a year, face long periods of isolation as the treatment makes patients’ bodily fluids radioactive, meaning caregivers and parents can spend only five minute per day in their room. Additionally, the treatment requires specialized rooms that need to be lined with 1 inch of lead brick shielding around all four walls and at the floor level.

The window above the parent room desk, which comprises six layers of 1/4-inch leaded glass, allows the parent to maintain visual contact with the child during their treatment.

Because not every facility has the budget or space to accommodate the specialized design, many families are forced to travel away from home to find a treatment facility—a reality faced by the Santos family when their daughter Isabella was diagnosed with the disease at age 2. She endured five relapses with the disease before she passed away at age 7 in 2012. Following her death, the family created the Isabella Santos Foundation and donated $1 million to Atrium Health Levine Children’s Hospital in Charlotte, N.C., to build the city’s first MIGB therapy suite.

Working with Little (Charlotte), the hospital decided to turn two side-by-side patient rooms on the 11th floor pediatric oncology unit into a 244-square-foot MIBG room and a 250-square-foot parent room. A nearby storage room was converted into the Hot Lab, where the treatment is prepared. “Proximity to the Hot Lab reduces travel time to the patient and the risk of radiation exposure to others,” says Roger Wilkerson, healthcare practice leader at Little.

To address the isolation of the treatment as well as the need to provide constant patient monitoring, a lead-line window and door were added between the rooms to visibly and physically connect the two spaces, with all access to the patient room coming through the parent room. “It allows the parent to see the child when they cannot physically be in the room,” Wilkerson says. Additionally, the rooms are connected by an AV system, which allows caregivers to see, talk, and play games with the child.

Creative Fundraising + Team Building

[Creative Fundraising + Team Building = $7,000] In July Red Ventures held an employee charity cornhole fundraising event benefiting the Isabella Santos Foundation. We had so much fun spending the afternoon watching the last 2 teams battle it out in the championship round. In addition, teams competed to be top fundraisers and a total of over $7,000 was raised for pediatric cancer during a regularly scheduled workday!

James & Jacob of Red Ventures

Thank you to James, Red Ventures Chief Technology Officer, for encouraging his Tech Team to participate and coming in as the winning fundraising team raising $1,100 during the day. On their heels was the very enthusiastic Recruiting Team coming in 2nd.  

Red Ventures believes in empowering employees to be the authors of their company story. Their community involvement program is 100% employee-driven in supporting the causes that their employees are most passionate about. What a fun and creative fundraising idea, thank you to Jacob Virgil, a member of the ISF Board of Directors and Senior Associate at Red Ventures, for bringing the Red Ventures community together to help bring change for kids fighting cancer! 

We are so excited to have Red Ventures as the presenting sponsor for our  12th Annual 5k,10k & Fun Run for Kids Cancer on Sept 28. You don’t want to miss this year with our NEW brunch experience! Get registered but don’t forget to add on brunch:  5kforkidscancer.com

Isabella Santos Foundation’s July Takeover of the Ronald McDonald House of Charlotte

The Isabella Santos Foundation is providing an extra layer of support for families staying at the Ronald McDonald House of Charlotte for July, August and September!  Ronald McDonald House provides a safe and caring home for families who have children receiving medical treatment in the Charlotte area. Our ISF team had a blast this past Thursday taking over the house! We were able to provide accommodations for 28 wonderful families for the night! A yummy picnic dinner was provided by our friends from Jersey Mikes. To finish off the evening we watched a Pixar classic, A Bug’s Life, in the movie room with popcorn, candy, and games! Our team had the best time providing that little extra love to families who need constant support during this difficult time. There are so many ways you can get involved with RMH, check out their Wish List and other ways to help these families. There’s more to come, we are hijacking the house again in August to help support families away from home.  Can’t wait to share with you. Check out our video recap below.

Meet Carysn Pendley and her family! Check out her story and why it is so important to support the Ronald McDonald House.

Expecting a child should be a time of joy, excitement and anticipation to build early bonds. However, when the Pendley family learned that their daughter Carsyn would be born with spina bifida, everything changed. 

“The doctor explained that once Carsyn was born, she would need immediate spinal cord closure surgery, a possible shunt inserted in her brain, and she would be in the hospital two weeks or more as she healed,” said Carsyn’s father, Ryan. 

Living an hour away from Levine Children’s Hospital, the Pendleys were concerned about how they would be able to visit Carsyn daily. They considered staying at hotels nearby but knew those costs would quickly add up. Plus, they also had 9-year-old Brenden to look after. 

Times like these are far too common for families with children requiring medical attention. Luckily, Ronald McDonald House of Charlotte is available to keep families close when they need it most. 

The Pendleys quickly realized that the Ronald McDonald House was so much more than just a room to sleep in and a place to shower. There was a fully stocked kitchen, laundry and game room, plus the entire House was filled with compassionate and supportive people. 

“Having a place to rest and recharge like the Ronald McDonald House was vital in helping my wife and I get through what ended up being a 10-day stay in the NICU for our daughter,” Ryan says. “Today, Carsyn is thriving despite all of this. She has made great strides—[actually] walking and running, neither of which she was supposed to be able to do! We will be forever thankful for the care Carsyn received and for the support and shelter of the Ronald McDonald House of Charlotte.”

Thank you to the Ronald McDonald House of Charlotte’s staff and volunteers for everything you do! See you in August!

Big Accomplishments for this Little Cancer Warrior

Over the past year, Madison was in the deep throes of battling osteosarcoma, a rare pediatric bone cancer.  In that same year, Madison, now age 6, learned to walk again, completed kindergarten, stole the heart of Duff Goldman from Kids Baking Championship and most importantly, beat cancer. 

That’s a big list of accomplishments for one little girl.

In 2018, over the course of 3 short days, Madison’s life swiftly changed. It all started with pain in her right leg and completely lost the ability to walk a few days later.  After immediately heading in for X-rays after what thought was a possible broken bone, a soft spot was found on her right femur. Immediately taken to Levine Children’s Hospital, Madison was later diagnosed with osteosarcoma in April of 2018 at five years old.  This type of cancer is extremely rare and almost unheard of in kids her age The solid tumor discovered took up to about three-fourths of Madison’s adolescent bone.

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.

In February 2019, she finished treatment at Levine Children’s and has since had very positive scans showing no cancer! At about the same time of finishing treatment, Madison learned her Wish trip would be granted by Make-A-Wish Central & Western North Carolina Chapter.

Madison and her family just got back from her Make-A-Wish trip to Los Angeles.  She didn’t ask to meet Taylor Swift or go to Disney World. She wished to meet Duff Goldman, a silly and bald baker. And what happened? They became best friends of course! 

“Duff Goldman by far is the most genuine person alive. Duff and Madison hit it off immediately and she didn’t ever want to leave. One of the sweetest moments was when they got in a mini food fight. Duff covered her chef jacket with chocolate and jam, said you can’t trust a chef with a clean jacket. Madison never wants to wash it!” 

Madison and her family enjoyed baking time with Duff, exploring Universal Studios, riding in limos and exploring some of California’s yummy eats. “To think where we were a year ago. The whole trip was surreal. We made some pretty awesome memories that we will never forget, none of us will ever be the same.”

And that’s what Make-A-Wish does, they create life-changing wishes for children with critical illnesses. The positive impact wishes give to kids and their families are invaluable.

For the second year, the Isabella Santos Foundation ran an online March fundraiser in honor of what would have been Isabella’s birthday month, that fundraiser directly impacted Madison’s wish trip.  Make-A-Wish granted Isabella her wish and gave her the best days of her life as well as giving her family the best memories of theirs. Honoring Isabella’s birthday by providing the same for another cancer fighter is exactly what she would love!  

Thank you for supporting the Isabella Santos Foundation, we can’t express enough how much your support inspires us to do more for these cancer warriors and their families. You helped make a little girl’s dream come true and it will be something that will stay with her forever. 

Photos of Madison’s Wish Trip:

Surprise, it’s Christmas in July!

Ho ho ho! Surprise… it’s Christmas in July! Our ISF elves have been busy picking out the best toys for some extra special boys and girls. Today was the big day! Santa ditched his summer surfboard and broke out his sleigh to travel all the way to Levine Children’s Hospital with a special stop at the oncology floor and clinic. Thank you to all of Santa’s ISF elves and supporters who make magical days like today possible.

Huge thanks to Toys and Co. for helping our elves with the toys!