William and Aiden have distinct personalities, but their brotherly love is undeniable. William, at 13 years old, is an 8th grader with a gentle and introspective nature. He’s bright, kind, and deeply involved in the arts, playing the viola and participating in his school’s theater program. Aiden, who is 15 and a freshman in high school, is a natural leader and extremely extroverted. He’s a standout athlete in both lacrosse and football. While he and William may not always share the same interests, his mom, Amanda, and dad, Ryan have made sure that their bond remains strong, especially as they navigate one medical challenge after another.
William’s health journey began before he was even born. At Amanda’s 20-week pregnancy scan, they discovered that William had a severe cleft lip and palate—a condition that would require multiple surgeries and ongoing care. “We had no idea what was ahead of us,” Amanda recalls. “It’s often dismissed as a cosmetic issue, but it’s so much more than that. It’s structural—it affects how he eats, how he speaks. The first decade of his life was filled with surgeries, constant visits to Boston Children’s, and therapies.”
Despite the difficulties, William thrived. He became known for his resilience and strength, even as he navigated a medical journey that many adults couldn’t imagine. But just as they thought they were nearing the end of one road, another challenge hit. About 3.5 years ago, when William had just turned 10, his medical team became concerned about recurring lumps of scar tissue that would appear after his surgeries. The team tried massage and cortisone treatments, but the lumps persisted. Eventually, the tissue was excised, still believed to be scar tissue or a cyst. After a biopsy returned inconsistent results, the doctor sent the sample to several pathologists, taking advantage of the many experts here in Boston. While William and Aiden were at camp, Amanda and Ryan received the devastating news: it wasn't a cyst or scar tissue, but a rare trauma-induced desmoid tumor. Though desmoid tumors can sometimes be dormant, William’s was aggressive, likely triggered by his earlier cleft surgeries.
Desmoid tumors are incredibly unpredictable, painful, and difficult to treat, especially in William’s case, as his tumor was located on his face, near his cheek and lip. Surgery wasn’t an option, as any attempt to remove the tumor could cause it to grow even more aggressively. “It was a shock,” Amanda says. “We were just coming to terms with the fact that he had made it through the cleft surgeries, and then this. How do you explain to a 10 year old child that they’re facing something even bigger than what they’ve already overcome?”
For the past three years, William has been on chemotherapy, starting with Sorafenib, which ultimately failed to stop the tumor’s growth. Now, he is on a trial drug called nirogacestat, which has been successful in halting the tumor’s progression and managing his pain. “Before, he couldn’t even brush his teeth without excruciating pain,” Amanda explains. “Now, he’s more comfortable, but there are still side effects, and the long-term impact is uncertain. We live day-to-day.”
Throughout this journey, the entire family has been impacted, especially Aiden, who has taken on the emotional weight of his younger brother’s illness. “Anyone with a sick child will attest to this - it takes its toll on the siblings,” Amanda says. “The sibling is often jealous of the attention even though they know it’s not attention they want, it’s not anything they’d wish upon anyone, but it’s hard for their brain to process. And the sick child is envious too—why them and not their sibling? That’s why Ryan and I feel that giving them opportunities to stay connected is so important.”
The brothers, though different in many ways, have found common ground in a shared activity. With support from donors like you, Lucy’s Love Bus is able to fund personal training sessions for Aiden and William to do together. They’ve been able to bond in ways they hadn’t before, and the sessions have become a powerful way for the boys to connect. “It’s been a game changer for them,” Amanda says. “They work out together, push each other, have fun together, and come out of it feeling energized. It’s been good for William physically, but it’s been amazing for Aiden too. He’s had to take on so much as the older brother, and this gives them both an outlet.”
As they continue on their journey, Amanda remains hopeful, but also realistic about the challenges ahead. “We’re about to enter some hard years, and maintaining that connection between the boys is a big focus for us.” But for now, moments like their time spent together at the gym through Lucy’s Love Bus are invaluable. “Any opportunity for parents to see their kids happy and engaged, and not thinking about their burdens, even for a little while, is amazing,” Amanda says. “And that’s exactly what Lucy’s Love Bus gives us.”
Amanda’s final thought is a reminder of the importance of programs like Lucy’s Love Bus for families facing childhood cancer. “These extra things—the activities and integrative therapies - these are the outlets, the moments of joy. They’re not just nice to have, they’re essential. They’re what help us heal, mentally and emotionally. We are so appreciative of Lucy’s Love Bus for allowing us these outlets, and all of the supporters who make it possible. It’s a gift beyond words.”
