In medicine, and in life, it’s not often you’re able to say you were the “first.” But for 18-year-old Angelina, she can say she was the first pediatric patient to use the new iodine-131 metaiodobenzylguanidine (I-131 MIBG) therapy suite built at St. Louis Children’s Hospital in 2019. That meant being the first to stay in the specially designed, lead-lined room for about a week while her body slowly eliminated the targeted radioactive infusion she received to treat her cancer.
Angelina chose to not think about her diagnosis or the procedure, instead focusing on her future during her stay in the MIBG room. For those who know Angelina, this doesn’t come as a surprise. She wants to complete her treatments so she can focus on finishing high school, attending the University of Missouri and becoming a veterinarian.
However, as a parent, her mom, Charlene, said the process was difficult. “It was hard. You feel helpless. You want it (the cancer) to get better.” She was able to enter Angelina’s room every few hours to assist her with various medical needs. She wore full body protection and changed it every time she went in and out of the room due to the radioactivity.
“That’s the only time I had access to her,” says Charlene. “I couldn’t give her a hug, but at least I had a chance to go in there.”
A Long Road Ahead
Angelina is the exception to the rule according to Washington University pediatric hematologist and oncologist Fred Huang, MD, who heads up the MIBG program at Siteman Kids at St. Louis Children’s. Most pediatric patients are diagnosed with neuroblastoma as an infant or toddler. In fact, it’s the most common cancer in babies under age 1 and rare in children older than age 10.
In Angelina’s case, her cancer diagnosis came at age 13 but she started her medical journey when she was much younger. Starting at 3 years old, Angelina began having a series of seizures, sometimes up to seven in one day. Under the care of a neurologist, she was diagnosed with juvenile epilepsy and received treatment to control her condition. She was eventually given a clean bill of health, weaned off her medication and released by her doctor. Unfortunately, that wasn’t the end of her journey.
Angelina began to exhibit cold-like symptoms and body aches. She was simply told she had strep throat, but her family knew it was more. They arrived at Children’s looking for a second opinion. It wasn’t strep at all … it was cancer.
Once Angelina was diagnosed, she immediately started on a treatment plan that included surgery to remove a mass in her abdomen, chemotherapy and immunotherapy.
“She was always ready for what was next,” said Dan Willis, MD, a Washington University pediatric oncologist at Children’s, about Angelina’s positive attitude while she underwent year after year of procedures, surgeries and cancer treatments.
“There were times when I didn’t think she would make it,” said Charlene. “Like when her blood pressure went so low that we weren’t sure she would wake up. It breaks my heart to see Angelina go through such hardships. Like all parents, I just wish I could take it away.”
After her other options failed to put her into remission, Dr. Willis and Dr. Huang determined that MIBG therapy would be the next course of action. And while MIBG is currently only considered when other treatments have been exhausted, their hope is that one day it will be used with a new diagnosis before the body undergoes the stress of standard cancer treatments.
Making a Dream a Reality
Angelina and her family are local to the St. Louis area, but for other families needing MIBG therapy, there are only about 20 centers located across the country. The next nearest center is approximately 300 miles from St. Louis. But according to Dr. Huang, what makes the MIBG program at St. Louis Children’s so special is not only the location but the way the team focuses on family-centered care. The caregiver’s suite attached to the patient rooms seems like an obvious addition, yet not every facility has one. What’s already a hard time for families, who often are picking up their lives and traveling for treatment, shouldn’t be made any harder by a lack of easily accessible resources for the family.
When Washington University Physicians shared the desire to build an MIBG therapy suite at St. Louis Children’s, the time from concept to completion was nearly record-breaking. The request for support was made to St. Louis Children’s Hospital Foundation in 2018 and because of donors like the Blues For Kids Foundation, Butler Family Foundation, Development Board of St. Louis Children’s Hospital Foundation, Mr. and Mrs. Hale S. Irwin and the World Record Baseball Game 2019, construction of this best-in-class suite was ready to welcome patients just a year later — a true testament to the power of philanthropy, and the willingness of donors to understand the value of unrestricted gifts.
For Angelina, the future remains positive yet cautious. Her scans detected an increase in cancer activity, and she was admitted for another round of MIBG therapy in September 2020. Never letting any obstacle deter her, Angelina is still on track to graduate high school in Spring 2021, attend college to continue her education and one day own an animal hospital.
Throughout all of this, no matter what comes her way, Angelina is willing to do whatever it takes to beat her neuroblastoma once and for all.