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MIBG Patient Receives Gifts By Isabella Santos Foundation MIBG Ambassador

Our team is so excited to share that another patient was recently treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s!

When a child begins MIBG treatment they receive a gift basket paid for by ISF MIBG Ambassador fundraising. This MIBG basket is thanks to Melissa Scanlon, a fellow cancer mom, and her sweet family. Melissa’s daughter, Gemma, was diagnosed with Wilms Tumor on her 3rd birthday in 2017.

Thanks to the Scanlon’s, we were able to provide a few comfort items, gift cards, snacks, toys, and more to make it feel a little more like home!

Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.

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.

First MIBG Therapy Patient Paves the Way at Levine Children’s Hospital

On this beautiful Christmas Eve morning, we received texts and emails letting us know the first MIBG patient in the new ISF MIBG suite at Levine Children’s has been discharged after a successful admission! This puts a bow on 2018 for us… our hearts are overflowing. Merry Christmas to everyone who helped make this a reality.

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

Now, Alexandra is glad to be spending Christmas at home with her family, complete with movie nights (Disney and popcorn – her favorite!) and continuing to reach for her dreams: being on Broadway.

More details about the ISF MIBG Therapy Suite at Levine Children’s.

The Value of Time

Written by Erin Santos, Isabella’s Mother

Isabella Santos Foundation MIBG Therapy Suite

In less than 3 weeks, a new year starts for us all.  Personally, I love the upcoming New Year because I’m all about restarting.  I look back on this last year and it seems like a blur to me.  It happened so fast but at times seemed to drag along.  We set big goals for ourselves as a foundation and boy did we learn a lot.  Construction started the Isabella Santos Foundation MIBG Suite and we watched in amazement as Levine Children’s Hospital quickly held up their end of the deal and knocked out a world-class cancer therapy suite in less than 9 months.  The monthly updates and tours energized us as we plugged along different events, reminding donors of what was happening in their hometown thanks to their donations.  Levine Children’s was holding up their end of the deal, so we had to do the same.  Each Tuesday, our team would meet and walk through the numbers, wondering if we were going to be able to present them with another $100,000 – and many months we did.

In late November, the ISF MIBG suite was nearing completion and I found myself getting extremely emotional in meetings.  Not to say we haven’t done big things before, but this was different.  This wasn’t a tree planted in her honor or a check sent to a hospital to fund a portion of a childhood cancer trial.  This was an immediate impact and I knew there were families fighting for their child and waiting for this ribbon to be cut so their child could receive this treatment.  It became so real all of a sudden.

Isabella receiving MIBG therapy in Philadelphia

This was also the first time that we did something that wasn’t promising a cure and as a team, we had to be okay with that.  I sent my entire team the journals I wrote during Isabella’s relapse that lead us to MIBG treatment in Philadelphia.  I wanted them to read what it was like from the perspective of a mother, who knew in the end – this may not cure their child.  I was realistic and knew this cancer treatment was doing… it was giving her time.  I didn’t really grasp what that meant back in 2011 because we were always hoping for more time.  We kept telling ourselves that a cure was right around the corner and if we could just keep her alive a couple of more months, some trial would open up that would be the magic we were looking for.  But for us that never happened.  Instead of bringing us to a cure – it gave us a Halloween we shouldn’t have had, a Christmas with a healthy child and a 7th birthday she never should have seen.  10 months.  It gave us 10 more months – and that time was priceless.

She was 6, going on 7 and in these years she was developing into who she was going to be.  She forged friendships and character traits that I will always remember.  Time with all those new friends and valued time with family members that they will always cherish.  In the end, it didn’t save her – but sometimes time is just as valuable as a cure.   It was for us.

I would sit in these meetings at the hospital and hear about the possibility of patients coming by the end of the year to receive this therapy here in Charlotte thanks to our donation.  I knew the first couple of stories may not be the ones you want to hear, and I was afraid this room would not seem like a success to you.  I wasn’t sure if our donors were going to understand the importance of time.  Sure, there will be stories talking about moving the needle for pediatric cancer survival rates and I can’t wait for those.  But they will take time.  Both stories are valuable and I found myself being overcome with emotion about the possibility of providing this to the kids and families fighting cancer in Charlotte and beyond.  It’s absolutely incredible.  Think of what you are giving to these families.

Erin Santos giving the first tour of the Isabella Santos Foundation MIBG Therapy Suite

The night of the ribbon cutting, I wanted to give the first tour.  I took my family up to the room and found myself giddy about it.  You would think I was about to show them some masterpiece I had painted.  Kind of silly really.  These two rooms connected by a lead door and a yellow tinted piece of glass.  A room wrapped in plastic that looks kind of scary but a look up to the ceiling provided a view of stars and planets with even a shooting star they could wish upon.  A killer AV system that keeps kids entertained while the medicine blasts away their cancer and the large painting of Isabella hangs in the corner reminding us all how we got here.  All I kept saying was I hope people really “get it”.  This room will change lives for people… and I’m not really sure how many things you get the opportunity to support that does something at this magnitude, but this is big.

Erin Santos giving the first tour of the Isabella Santos Foundation MIBG Therapy Suite

So now we close up the year with the hopes of watching the first patient start receiving treatment in 2018.  I’ll say a little prayer and cross my fingers – hoping what we all did is something that changes fate for a kid fighting.  I know it will.  I just hope all our supporters understand how unreal this is and how it’s just the beginning of what we are building here in Charlotte and 2019 is in our sights.  I know for myself, this year is going to be one of the best years of my life.  I’ve surrounded myself with an amazing team, friends who support me and family who I have never been closer to.  I’m the happiest I have been in years and I’m excited to think of what you can accomplish when you have happiness, love, and support in your life.  The possibilities are endless.

Connie, Erin’s Mom, poses in front of Isabella Santos Foundation MIBG Suite

This room that we have worked so hard to build is open, and when one door closes – another one opens.  We have a 5-year, 5 million-dollar commitment to Levine Children’s and kids fighting cancer staring us in the face on January 1st.  The first Rare and Solid Tumor Program of its kind in the country will start forming as we fund a new team of top doctors, researchers, nurses and more.  Our goal is to take this last month of the year and push ourselves to make the first $100,000 installment towards this commitment.  Here at ISF, we like to exceed expectations and we hope that after watching what we did with your help in 2018, you will want to be along for the ride for years to come as we make history here in Charlotte.

Every single donation makes a difference… and we hope this last year showed you how very true this is.

Click here to make your year-end donation and help us kick off our first $100,000 installment towards the Isabella Santos Foundation Rare and Solid Tumor Program at Levine Children’s Hospital. Be part of changing childhood cancer care in Charlotte and beyond.

Thank you for being part of the Isabella Santos Foundation family. We look forward to achieving even bigger things for kids fighting cancer in 2019!

Isabella Santos Foundation: (L-R Top) Rachel Wood, Karen Murphy, Kerry Winslow (L-R Bottom) Erin Santos, Tia Wackenhagen, Maitland Danner