November is National Caregivers Month, a time to recognize the resilience and dedication of caregivers everywhere. For Josh and Clare, this month holds special meaning as they reflect on their journey as caregivers for their two daughters: Josephine, 10, and Tilly, nearly six. In 2021, Tilly was diagnosed with a low-grade glioma in her spine, a tumor that not only brought unimaginable challenges, but also profound transformation to their family. As parents navigating the complexities of childhood cancer, Josh and Clare’s lives have changed in every way: as caregivers, advocates, and staunch supporters for their daughters.
Four years into managing Tilly’s diagnosis and treatment, Josh and Clare have witnessed incredible progress. “She’s doing great right now,” Josh shares. “The tumor isn’t just stable, it’s shrinking!” For them, this unexpected improvement has brought renewed hope and a brighter outlook for Tilly’s future. The family celebrated another positive milestone this fall as Tilly entered kindergarten and Josephine switched schools. “It’s fantastic to see them happy in their new environments,” Clare says. “Watching Tilly be curious and excited about school and Josephine really connecting with her new friends is just wonderful.”
But beneath the joy of these moments lies a demanding reality for Josh and Clare as caregivers. From medical appointments and integrative therapy sessions, to balancing work and family life, they face an ongoing challenge to keep everything in motion. This summer was especially challenging when Josh broke his foot and Clare had to increase her work hours. “Just when you think you’ve got a rhythm, life happens,” Clare reflects. “I was working almost full time and trying to juggle everything else. It’s overwhelming, and it’s easy to feel like I’m failing somehow, like I should be able to do it all.” Clare’s internal pressure to work full-time and manage family responsibilities is common for caregivers, yet she’s found comfort in hearing others share similar feelings. “Connecting with other childhood cancer parents at Camp Sunshine and through Love Bus has helped me realize it’s okay to find what works for our family and not feel like we have to measure up to anyone else’s expectations.”
One of the hardest aspects of caregiving, Josh notes, is navigating the long-term impact of Tilly’s illness on their family. “It changes everything. And not all of it is negative,” he explains. “But the weight is always there, even on good days. The diagnosis changed who we are and how we balance our lives.” With Tilly’s condition classified as a long-term, unresectable tumor, Josh and Clare are facing a marathon of unknowns. As they move through each stage, they wrestle with how the experience shapes not only Tilly, but also Josephine, who must adjust to the family’s changing rhythm and cope with the emotional impact of her sister’s illness.
Finding time for Josephine amid the focus on Tilly’s needs has become a priority. “We try to be intentional about creating moments just for her,” Josh says. One such effort, known as “Educational Wednesdays,” became a treasured routine where Josh would take Josephine on outings to museums or parks, focusing solely on her. “Recently, she was featured in an article about the New England Aquarium, and it made her so happy to have that recognition for herself. Moments like that remind us how important it is for her to feel seen, too.”
Through it all, Lucy’s Love Bus has been a source of relief and support, especially with the recent expansion of the Ilene’s Caregivers Program, which provides resources and therapies for caregivers like Josh and Clare. “The Dad’s support group has been incredible,” Josh shares. “It’s this space where we can really talk, whether it’s about the diagnosis or anything but. Just being around other caregivers who get it is invaluable.” With funding from Lucy’s Love Bus, Josh and Clare have also been able to invest in chiropractic care for themselves. “It’s easy to ignore our own needs, but this funding allows us to address our health so we can keep going,” Josh says. “If you don’t take care of yourself, things break down. You’re not able to help your family if you’re struggling physically or mentally.”
Reflecting on the ongoing journey, Josh and Clare have found ways to embrace moments of peace amid the chaos. “Some nights are harder than others,” Clare admits. “Sometimes you just have to cut yourself some slack and make chocolate chip pancakes for dinner, and that’s okay.” For Clare, it’s these small acts of self-compassion that keep her grounded. And as the family moves forward, they hold onto the progress Tilly has made and the hope that sustains them. “It’s a weight we carry, but knowing we have support and that we’re not alone in this makes all the difference.”
Recently, we were able to expand our Ilene’s Caregivers Program, providing much-needed support and relief to dedicated caregivers like Clare and Josh as they navigate their journey with love and resilience. We couldn’t have done it without donors like you - thank you!!!
