Tag Archive for: rare childhood cancer

Wilson’s World: Learning More About the Upcoming Isabella Santos Foundation 5K for Kids Cancer (WCCB Wilson’s World)

Originally posted on WCCB

CHARLOTTE, N.C. – Wilson was at the corporate offices of Red Ventures this morning where he was previewing the 12th Annual Isabella Santos Foundation 5K for Kids Cancer that will be held on Saturday, September 28th.

The Isabella Santos Foundation is named for young Isabella Santos who was diagnosed in 2007 of neuroblastoma.  Thanks to donors she was able to receive blood and platelet transfusions that gave her 5 more years of smiles and memories.  Her legacy continues through the foundation and their fight to help other children with cancer.  More information on the Isabella Santos Foundation can be found at their website isabellasantosfoundation.org.

Participants can sign up for the 5k, a 10k, a kids fun run and even a brunch.  This year’s event is sponsored by Red Ventures and includes raffles and a kid’s zone with games, bouncy houses, face painting and more.

The event will be held at Ballantyne Corporate Park on Saturday, Septemer 28th from 8am until 11am.  Get more information on the event as well as to sign up to participate or donate HERE.

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.

Charlotte now has a new way to treat rare cancers

 

Levine Children’s has a new way to treat rare cancers.  In December, they opened the Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s Hospital – one of only a handful in the United States.

Alexandra (center) is the first patient to receive MIBG treatment in the new The Isabella Santos Foundation MIBG therapy suite at Levine Children’s Hospital. She has neuroblastoma and has relapsed 10 times. Alexandra’s first treatment went well, and she thought it was “so cool” to be the first patient, making history and paving the way for others.