Bringing Hope Home: Iliana’s Courageous Journey Through Leukemia and a Lifesaving Bone Marrow Transplant

Iliana’s first round of chemotherapy entailed a nearly 50-day stay at Connecticut Children’s. 

“I lived in the hospital with her,” Brianna said. At seven months of age, Iliana needed full-time care. “It gave me too much anxiety to leave her with someone else and someone else changing the diapers and feeding her.”

After the first round of chemotherapy, a bone marrow biopsy revealed that her measurable residual disease status (the number of cancer cells remaining) was still too high. To beat this cancer, Iliana needed a bone marrow transplant. For that, she would have to go to Boston Children’s. It also meant that she would have to stay at Connecticut Children’s for two more rounds of chemotherapy to clear as much of the cancer as possible. It was now February and Iliana and Brianna had been living in the hospital non-stop since September, with only a three-day break over New Year’s. Iliana celebrated her first birthday in the hospital.

“Connecticut Children’s was great. It was basically my home,” Brianna said. “I literally knew everybody because all I did was just do laps around the hallway with Iliana. Sixteen laps is a mile.” The nurses on the eighth floor became a huge part of their lives. “Iliana got to know a lot of the nurses. After the third round [of chemotherapy], she didn’t even care about me. She just wanted to be with the nurses,” Brianna remembered with a smile. “But they would hold her if I needed to take a shower. The nurses made sure I had coffee and food and made sure I wasn’t going insane.”

At the end of February, Iliana was transferred to Boston Children’s for the transplant. In Boston, she had several more days of chemotherapy to suppress her immune system and prepare her bone marrow for the new stem cells. Then the transplant was performed and Iliana was discharged in early April. For the next month, she and her mother had to remain in the Boston area to accommodate the many follow-up appointments and to be close to Boston Children’s in case of complications or an emergency. They rented a home where Iliana’s father and 3-1/2-year-old brother could also stay. The house also gave Iliana more room to move about and play, instead of the limited space she had during her many long months in the hospital.

Coming home to Connecticut wasn’t the end of Iliana’s long care journey. Her exposure to people has to remain limited as her immune system gradually rebuilds itself. She has to relearn to eat, because the many months of chemotherapy side effects caused an aversion to food. In addition, Iliana has a type of AML that leaves her at an increased risk of relapse. She is enrolled in a clinical trial at Boston Children’s that gives her access to a new treatment that has been shown to reduce the rate of relapse. The treatment involves six months of lower dose chemotherapy, decitabine (a drug that helps her bone marrow produce normal blood cells and kill abnormal cells), and growth factor injections to help the cells of her bone marrow grow and mature. That has meant months of continued appointments with pediatric hematologist/oncologist Natalie Bezler, MD, and Paul Tomlinson, DO, at Connecticut Children’s, as well as doctors at Boston Children’s.

“One of the hardest things was mentally wrapping my mind around the fact that I had to go live in Boston for the bone marrow transplant,” said Brianna. “I was very nervous because none of my family lives that close. I knew it was going to be longer times in between visits during the hardest time. You want someone to come visit you. You need help.” 

A bone marrow transplant requires specialized facilities that Connecticut Children’s has not had. So for years, families in Connecticut have had to go to children’s hospitals in Boston or Philadelphia to get this lifesaving procedure for their children. That often means families separated and living apart for months, jobs and income disrupted, budgets upended by the costs of renting accommodations in another city—all during one of the most stressful times a family can experience, the serious illness of a child.

That’s about to change. One of the centerpieces of Connecticut Children’s new 8-story tower will be the Advanced Cellular & Gene Therapy Unit (ACGTU). Instead of sending kids out of state for bone marrow transplants, stem cell transplants and gene therapy, we’ll be able to keep them here at home. The new ACGTU will be a hub for innovative medicine, cutting-edge research and the latest clinical trials.

“Keeping kids at Connecticut Children’s for these treatments also means keeping kids in a familiar environment where they’ll be cared for by the doctors and nurses who know them best,” said Michael Isakoff, MD, Division Head, Connecticut Children’s Center for Cancer & Blood Disorders. “We want to be by their side on the difficult days and to celebrate with them on the good days.”