By Yen Duong
It’s hard enough being a parent of a child with cancer—traveling for treatment can worsen the ordeal. Erin Santos remembers three weeklong trips from Charlotte to Philadelphia for a special treatment, called MIBG (metaiodobenzylguanidine) therapy, which extended her daughter Isabella’s life by 10 months.
“[We] had no visitors so when she was asleep, I would sit out in the hallway and read a book alone,” Santos said. “I didn’t know a soul there. To be able to have family and friends come up and visit just to give the parent a break every once in a while… makes treatment so much easier for everybody.”
In 2009, Santos founded the Isabella Santos Foundation to fund research and increase awareness of neuroblastoma, the third-most common childhood cancer after leukemia and brain and spinal cord cancers.
A $1 million gift from the Isabella Santos Foundation covered the costs for Levine Children’s Hospital in Charlotte to construct a special suite of rooms for MIBG therapy. Construction finished at the end of November, and the rooms will be ready for patients within the next month, said nurse practitioner Dawn Bartock, who is Levine’s clinical lead for MIBG therapy.
The hospital built more than 20,000 pounds of lead into the walls, door and windows of the patient room to protect others from the radiation after the MIBG therapy. Every surface besides the bed linens are also covered in plastic—if radiation contaminates any object, the hospital must replace it, Bartock said.
A few times a day, the parent can visit their child by opening the 900-pound door which includes a solid inch of lead. Otherwise, they stay in the parent room, which includes a lead-lined window to the patient room, a speaker system to talk between the rooms and a TV system to play video games, movies or video chats for visitors with the matching TV in the patient room.
When Santos visited the Children’s Hospital of Philadelphia in 2011, she stayed in the same lead-lined room as Isabella, exposing herself to potentially dangerous radiation which targeted Isabella’s neuroblastoma.
“They actually put the parent in the room with the child and you slept behind a lead shield,” Santos said. “You are getting the radiation as well as the child. For [Levine Children’s Hospital] to take the parents into account when building this room, and making sure the parents were safe, I think it’s such a huge thing.”
Though MIBG therapy is expensive, Bartock said that so far, insurance has covered patient treatments and parent room stays, which means one less thing for parents to worry about.[sponsor]
“I don’t think people understand having a 5-year-old in a bed that can’t be touched, to not have a working DVD player or wifi that’s up and down,” Santos said. “Those things make four or five days very difficult for a parent. To have everything be state-of-the-art where you can play video games, their brothers and sisters can Skype them from home and see them on video–all those things make those days go a lot faster. And that’s all you want.”
Currently, parents who travel from out of Charlotte for their children’s treatments at Levine’s can stay at the Hospitality House of Charlotte or the Ronald McDonald House, both near the hospital, said Dr. Javier Oesterheld, medical director of the Levine cancer program.
“Everything is radioactive”
Neuroblastoma affects about 800 children in the U.S. each year, according to the American Cancer Society website, and is the most common cancer found in babies. Usually, the childhood cancer is treated with surgery, radiation therapy with X-rays and chemotherapy, according to Cancer.gov.
If those treatments don’t work, or if the cancer comes back, doctors turn to MIBG therapy.
In MIBG therapy, radioactive iodine drips through the patient’s IV line. They infuse the iodine for 90 minutes, then the patient must stay isolated for 3-5 days until their radiation levels drop low enough to safely leave, said Bartock.
The therapy emits two types of radiation–one type is absorbed by the lead lining the walls, and the other type targets the tumor cells and kills them, Bartock said.
“Their urine is radioactive, their sweat, their tears, their blood, everything is radioactive,” Bartock added.
Right now, MIBG is only used in “compassionate care” settings, to extend the patient’s life and make them more comfortable, Bartock said. A PubMed search showed that MIBG therapy has been used at least since the 1980s with varying dosages and outcomes. Research is still ongoing.
With slightly lower blood counts for a few weeks as the only major side effect, MIBG holds promise as an “upfront” therapy and is currently in clinical trials, Bartock said.
“After the first treatment, 90 percent of her cancer was gone,” Santos said. “She watched a movie while she was receiving the treatment. […] You think of all the treatments you give your kids between chemo and these experimental drugs that are just so awful and painful and make them sick. And this was nothing, she felt nothing, and [the MIBG treatment] got rid of so much of her cancer. It’s crazy.”
Clinical trials in the future
After Levine treats three patients in the new MIBG room, the hospital will be eligible to join clinical trials hosted by the Children’s Oncology Group, the world’s largest organization for childhood cancer research, said Oesterheld. Currently, patients can enroll in MIBG neuroblastoma Phase III trials at Duke and UNC, where there are also lead-lined rooms according to the online federal database at clinicaltrials.gov.
One of the trials is testing the efficacy and safety of using MIBG as a first step therapy instead of using it after chemotherapy and other treatments and will conclude in 2022. If it is successful, then MIBG may be offered before neuroblastoma recurs.
Only 18 to 21 sites in the U.S. offer MIBG treatment for neuroblastoma, Oesterheld said. Many, including hospitals in Ohio, Chicago, Wisconsin and Texas, incorporate a separate parent room as a suite, like the new room at Levine’s. But some only have a “clean corner” or anteroom for parents.
Oesterheld anticipates that most neuroblastoma patients will come to Charlotte from some of the more than 200 Children’s Oncology Group hospitals. When the suite is not being used for MIBG treatment, it will be used as a normal patient room, he said.
Since neuroblastoma frequently recurs, he estimated that about 200 patients in the U.S. at any given time could use MIBG treatment.
“If it relapses, it’s much harder to treat,” Oesterheld said. “Five to 10 years ago, we thought it was universally fatal when it relapses. And now with MIBG and some other clinical trials that we’re doing, we’re finding that we are able to cure some of those children.”