In January of 2019, Taina gave birth to twins, Luca and Nico. She and husband Adam experienced all the feelings parents of newborns go through, times two. A year later, Luca began having difficulty breathing. He was diagnosed with asthma and was prescribed Albuterol, a bronchodilator that relaxes muscles in the airways and increases air flow to the lungs.
That should have solved his problems, but then Luca began crying at night, and Adam noticed his stomach seemed hard, something he might not have noticed had Luca’s twin not been present. Around this same time, Adam noticed an AAA battery was missing and was convinced Luca had accidently ingested it. Their pediatrician recommended Connecticut Children’s for testing. A scan showed a problem much worse than a swallowed battery.
“May 5, 2020: the day our world was rocked,” says Adam. Luca had a tumor growing out of his spinal column, pushing against his lungs and heart. Adam said, “To hear the words ‘tumor,’ ‘neuroblastoma’ and ‘oncology’ in the same sentence–it shatters your life.”
Luca endured eight grueling rounds of chemotherapy. By October, his tumor had vanished, and the family looked forward to resuming a normal lifestyle. With the holidays approaching, celebrating the Christmas miracle took on a more profound meaning that year. They celebrated the New Year with hope and promise.
February’s routine scans, however, showed the cancer was back and had spread throughout Luca’s body. Adam says, “Luca was thriving, vibrant, energetic and hungry – there were no signs.” A relapse of neuroblastoma pushed Luca into the high-risk category and meant additional intense chemotherapy, two hematopoietic stem-cell transplants, 12 days of radiation therapy, followed by immunotherapy treatments.
Connecticut Children’s addition of an eight-story tower, expected to be completed in 2025, will provide an Advanced Cellular & Gene Therapy Unit, where hematopoietic stem-cell transplants can be completed. But in 2021, Luca and his family had to leave the state for treatment.
Summer of 2021 was spent at Boston Children’s Hospital, where Luca received two autologous hematopoietic stem cell transplants. By a process called apheresis, Luca’s healthy stem cells were collected soon after diagnosis of his relapsed disease and frozen to preserve them for later administration. The hematopoietic stem cell transplants involved high doses of chemotherapy that destroyed his bone marrow. His immune system then required rescue with infusions of his previously-collected stem cells.
Desperation and Critical Care
Luca’s little body experienced brutal side effects from his treatments. By mid-September, the situation turned dire. Luca’s temperature spiked to 107.2F, at which point he was intubated, fully sedated and received critical care for his organs.
“This was a feeling of desperation for me,” says Adam. The next week was touch and go. Adam says, “Those were hard days. They were the worst days for us.”
Slowly they saw improvement. Luca began breathing on his own and eventually came off the ventilator. His body, ravaged by cancer and treatments, required intense rehabilitation and therapy to improve his strength and other capabilities. He had to learn how to walk again.
Luca is currently catching up – he lost part of those important developmental formative years during his treatments. He currently undergoes scans every three months. “We hold our breath every time,” says Adam.