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

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.

Leading The Way in MIBG Therapy

Dawn Bartock

We are very fortunate to have Atrium Health’s Levine Children’s Hospital and an incredible pediatric nurse practitioner who is leading the charge with MIBG Therapy in our region.

Dawn Bartock, MSN, CPNP, CPHON, is the MIBG Therapy Program Lead at Levine Children’s Hospital. Being a nurse is all she has ever wanted to do. Dawn started her nursing career in Pediatric Hematology/Oncology, including time with Pediatric Hospice, then joined Levine Children’s Hospital from 2005-2011. She obtained her nurse practitioner degree in 2011 and left LCH to further her career in Pediatric Oncology at Texas Children’s Hospital and at Children’s Healthcare of Atlanta, where she was the MIBG Therapy Nurse Practitioner. 

After Levine Children’s Hospital got the green light to build an MIBG Therapy Suite, Dr. Oesterheld – Dawn’s mentor – tapped her to lead the MIBG Therapy Program literally from the ground up. So in 2015, Dawn returned to Charlotte and to Levine Children’s Hospital. What started as a side project while she was working clinically as a nurse practitioner on the inpatient oncology unit, has become a full-time position where Dawn oversees every aspect of planning and building the ISF MIBG Therapy Suite. 

“Being a part of the MIBG Therapy Suite construction process has been rewarding and fun,” said Dawn who is currently taking a break from the clinical part of her job, which will resume when the MIBG room opens later this year. “I feel like the jack of all trades and love been involved in this project.”

Not only does she bring her previous MIBG experience to her role and vision of what this state-of-the-art MIBG program should entail, Dawn has a connection to Isabella. During her first stint at Atrium Health in the outpatient clinic, Dawn was one of Isabella’s nurses who assisted the oncology team with writing chemo orders, scheduling scans, and helping Erin and the family with questions and concerns throughout therapy. 

“Isabella was always a sweetheart who had the sweetest little voice,” said Dawn. “One of my biggest memories of Isabella is the relationship she had with her brother, Grant, and them holding hands during clinic visits. It is very exciting to be involved in Isabella’s legacy.”

Levine Children’s Hospital will be 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 will provide targeted radiation to pediatric neuroblastoma patients with minimal side effects. This will impact kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.

“It is very important that we tailored the suite to the patient and the family while keeping safety for the patients and staff the top priority,” said Dawn.

Patients will stay in the MIBG room 3-7 days after they get their injection. The suite is designed with an adjoining room for parents to stay and to be more involved with the day-to-day care of the patient. The MIBG room will have a giant viewing window and a close-circuit monitor for staff to have constant video access – and even remote access – to the patient. Area organizations and businesses are helping fund items such as parent gift baskets, iPads for the patients and specialized sheets that patients can choose upon their arrival. 

“There is a lot of support in Charlotte with the Isabella Santos Foundation, other wonderful organizations and from throughout our community to create a welcoming, positive and comfortable experience for the patients,” said Dawn. “This is an exciting time for the Isabella Santos Foundation and Levine Children’s Hospital.”

We are looking for individuals who want to be part of providing comfortable care for the kids/families that go through MIBG Treatment. Our MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

 

A Lasting Presence

David Lieberman, ISF MIBG Ambassador

Isabella’s presence is POWERFUL.  In David Lieberman’s case, his nieces went to Calvary with Isabella.  David’s sister-in-law shared Isabella’s story with him, and he has been involved with ISF ever since.  

First it started off that his family participated in the annual ISF 5K every year.  “It felt tremendously good to be a part of something bigger than me.”  As David’s passion grew stronger and stronger, he continued to give back to ISF on a much larger level.  Giving back to ISF is “an opportunity to play a small role in the lives of people that are dealing with pediatric cancer.”

Even though David’s family has not been affected by cancer, he has known people who have battled it during their lifetime.  “It is highly probable that cancer will take someone that I love so I am choosing to be proactive in the fight to find a cure.”

David became an ISF MIBG Ambassador, with a goal to raise $5,000 for ISF.  You can help David reach his goal by participating in his raffle.  For $20, you receive 2 raffle tickets where you have a chance to win great prizes and gift cards.  Winners are announced on November 3rd.  For more details, visit www.JoinDavidFightCancer.com.  

That’s ACTION, David, thank you for representing ISF as a MIBG Ambassador.  Isabella thanks you!

MIBG Ambassador

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  As the new MIBG treatment suite continues to progress under construction, we want to ensure that we are preparing for the kids and families who will be entering this program.  New in 2018, we have developed a fundraising program focused on MIBG Therapy – the MIBG Ambassador.  Our goal for 2018 is to have 20 members collectively raising $100,000 for this initiative.  If you are interested in becoming an MIBG Ambassador, please email info@isabellasantosfoundation.org.  

MIBG Ambassador: Melissa Scanlon

Gemma & Melissa Scanlon

Last year, a little girl named Gemma Scanlon was diagnosed with Wilms tumor (a pediatric kidney cancer) on her 3rd birthday.  Instead of blowing out candles, the Scanlon’s family was faced with their daughter having cancer.  

Gemma received amazing care at Levine Children’s Hospital.  Dr. Pope and her team took care of their family with compassion and made a very difficult time so much easier.  The Scanlon’s were very grateful that their daughter’s cancer responded well to treatment, and just over one year they are seeing clear CT scans.

“I know the reason we have a great treatment protocol is because someone else raised money, did clinical trials and built facilities because the funding is sadly very limited.  It’s our turn to help the families that don’t have good options yet.  The ISF MIBG Ambassador program is designed to do just that.” 

Melissa is one of our MIBG Ambassadors through the Isabella Santos Foundation, fundraising to help make a difference. She is committed to help raise $5,000, knowing that it will help other families who are battling pediatric cancers right here in Charlotte.

“You can literally see the MIBG room being built uptown.  Kids in the Carolinas battling cancer will have better options for treatment here at home and that is awesome.”

MIBG Ambassador

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  As the new MIBG treatment suite continues to progress under construction, we want to ensure that we are preparing for the kids and families who will be entering this program.  New in 2018, we have developed a fundraising program focused on MIBG Therapy – the MIBG Ambassador.  Our goal for 2018 is to have 20 members collectively raising $100,000 for this initiative.  If you are interested in becoming an MIBG Ambassador, please email info@isabellasantosfoundation.org.  

MIBG Construction Update #4, Levine Children’s Hospital

MIBG Therapy Room, Patient/parent room dividing lead brick wall

Look at all the lead work that has been done since our site visit on the new ISF MIBG therapy suite at Levine Children’s Hospital…

  • Lead brick walls installed
  • Lead window frame and door frames installed
  • Lead ceiling installed
  • Reinstalling overhead utilities.

MIBG Therapy Program Lead, Dawn, shared with us that a Pediatric Grand Rounds (accredited healthcare eduction) is being held on MIBG therapy and immunotherapy tomorrow.  Many residents and other medical staff have been very inquisitive about the new room and therapy it will offer.  Dawn and Dr. Oesterheld are currently working on the formal education for residents and hospitalists that will take place in the coming months.

Signed MIBG lead brick

We are excited to learn that the lead brick that was signed at the the March 9th MIBG celebration will be placed in the wall in the coming weeks.  On this day we were joined on by our 3 Wish Circle Members and sponsors who helped us make this room a reality.  What was also special, doctors and nurses who treated Isabella during her time at Levine Children’s Hospital were  in attendance. Everyone in attendance signed a piece of Levine history as the lead brick will become part of the suite during construction.

Almost $14,000 has been raised by our ISF MIBG Ambassadors.  Want to be part of providing comfortable care for the kids/families that go through MIBG Treatment?  Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

 

MIBG Therapy Room, Patient Room Corridor Framing

 

MIBG Therapy Room, Patient Room Viewing Window

ISF MIBG Ambassador: Creative Fundraising

MIBG Ambassador Charity Salon Night

Our fundraisers are getting creative… and we love it! Courtney, a first-time ISF fundraiser committed to become an MIBG Ambassador this year. Last night she hosted a charity salon night at Petals Nails & Brow Boutique who generously offered to extend the hours of their salon and donate 20% of their sales for the evening. Girls night out, pedis, manis, wine, sweets and a few prizes… Courtney raised $550! Thank you Courtney for the creative fundraising idea, thoughtful touches on the evening, and thank you Petals Nail & Brow Boutique for supporting our community.

With the ISF MIBG Therapy Suite currently under construction at Levine Children’s, our MIBG Ambassadors are busy fundraising to ensure that we are preparing for the kids and families who will be entering this program. Learn more about what it means to become an MIBG Ambassador and how you can directly impact a child being treated with cancer.

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