Upcoming 5k for kids cancer (WCNC)
On September 28, The Isabella Santos Foundation will host their 12th annual 5K and brunch for kids cancer.
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.
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.
On the Seventh Year Since the Death of My Daughter (Queen City Nerve)
Originally Distributed in Queen City Nerve Newsletter and on Queen City Nerve
Dear Charlotte,
I remember sometime around a decade ago when I first came across Erin Santos’ blog. I’m not sure who shared it with me or how I came across it, but I was immediately enveloped by Erin’s raw writing style, confronting her child’s cancer diagnosis with honesty, fear, love and dark humor. I kept a picture of Erin’s daughter, Isabella, on my computer desktop back then as a reminder to check back in with the blog from time to time. The picture showed a 4-year-old Isabella in her family’s driveway with a pink flower dress on, her head bare save for a headband with a flower on it, if I’m remembering correctly. I remember every time I stared at that picture before going to the blog and I would think or say aloud, “Please don’t be dead.”
Until last Thursday, I had still never brought myself to read the post Erin wrote the day after Isabella lost her battle with cancer. Seven years later, it hits just as hard. I’m just as thankful for writing the post she shared on our website last Friday, on the seventh anniversary of Isabella’s passing, which of course uses Erin’s usual raw honesty to confront her feelings about moving on with her life and surpassing a dark milestone in which her daughter will have been gone for longer than she lived. While I know Erin will never forget Isabella, another thing that will never change as time passes is the life-saving impacts of The Isabella Santos Foundation (https://isabellasantosfoundation.org/ ), which Erin founded and has gone on to raise hundreds of thousands of dollars for pediatric cancer research and recently funded a $1 million leading-edge rare pediatric cancer treatment room at Levine Children’s Hospital called the Isabella Santos Foundation MIBG Suite.
I’m not one to use this publication as a solicitation tool, but if you have money to spare, that’s one of the places I would suggest you put it. And the story below should give you a sense of why, because no parent should have to go through what Erin has gone through.
Ryan Pitkin,
Editor-in-chief
Queen City Nerve
Charlotte’s Cultural Pulse
ON THE SEVENTH YEAR SINCE THE DEATH OF MY DAUGHTER
June 28 marked the seventh anniversary of the death of Isabella Santos, whose mother, Erin Santos, founded the Isabella Santos Foundation. On that day, Erin shared three posts with us ranging from the day after Isabella passed to June 28, as she looked ahead at how to live in a world in which Isabella has been gone longer than she lived.
Platelet Drive in Memory of Isabella Santos (4 pm News WCNC)
One hundred platelet donations in seven days. That’s the goal for the week-long platelet drive that the Isabella Santos Foundation is hosting with OneBlood to honor Isabella Santos.
Local Platelet Drive (Charlotte Today, WCNC)
The Isabella Santos Foundation and OneBlood are teaming up for a week-long platelet drive in hopes of receiving 100 platelet donations.
