Meet Nolan, your October Butterfly Buddy! Nolan is a one-of-a-kind, eight-year-old boy who recently started the second grade in his hometown in Connecticut. Nolan loves reading, going on bike rides, creating artwork, and being outside. He has a kind heart, and is very family oriented. He draws a picture for each member of his family - mom, Rachel; dad, Daniel, two-year-old sister, Vivian; dog, Dallas; and his grandparents - every single day.
In July of 2017, when Nolan was just 21 months old, Rachel and Nolan were vacationing in Myrtle Beach with Rachel’s parents. Before the trip, Nolan had seemed out of sorts - crankier than usual and not eating well - but Rachel had consulted her pediatrician, and they brushed it off as a result of a teething baby. A couple days into their vacation, after a particularly miserable day out with a moody and lethargic baby, Rachel and her mom decided that Nolan needed to see a doctor. At the walk-in clinic, they saw that Nolan’s skin was developing petechiae, tiny round brown-purple spots due to bleeding under the skin, and bruising on his back. They were immediately sent to the ER for blood work, where Rachel’s worst fear was confirmed: Nolan had leukemia.
Rachel and Nolan then had a two-hour ambulance ride from the Myrtle Beach ER to Medical University of South Carolina (MUSC) in Charleston, where Daniel joined them for a two-week stay in the pediatric oncology unit. After 12 days inpatient at MUSC, they were transferred on a $16,000 medical air transfer to Connecticut Children’s Medical Center (CCMC). After an incredibly stressful two weeks away from their support network, they were going home. Nolan spent two more weeks inpatient at CCMC and just under 3½ years in and out of hospital stays to undergo chemotherapy on his tiny body. But they were back on their home turf– with love and support from their family and friends; the medical expertise and guidance of a familiar healthcare team; and the love and comfort of their dog, Dallas– and Rachel knew everything was going to be OK.
It’s been six years since Nolan’s cancer diagnosis, and thankfully, he handled treatment very well. When asked what Nolan was like BC (before cancer) Rachel says, “I have been reminded of some of my son’s mannerisms as a baby by family, especially since we’ve had his sister, but I can’t remember my son as a baby. PTSD will do that to a mom/person.”
Recently, Nolan had his regular complete blood count check up, and Rachel said, “his counts came back amazing. They mentioned he can have counts every six months after this but I asked to have them every four months, because the anxiety behind not knowing is harder than going to find out if he’s healthy or if he relapsed.”
This is a part of receiving a cancer diagnosis: fear, anxiety, and PTSD. The family just took a trip on an airplane this year– their first since their medical transfer in 2017. Rachel and Daniel have a fear of being too far from home and being unable to drive to their hospital. Nolan was afraid of the dentist for a long time, and hadn’t had a haircut for the past several years due to sensory sensitivity; he has been diagnosed with ADHD and high functioning autism. Rachel will never know if these are related to the treatment he received as a baby and toddler, but she is under the belief that they are.
During Nolan’s long and challenging treatment, Lucy's Love Bus became an essential part of life for this family; and through Love Bus, they found a support network that extends beyond treatment. Nolan favors his alone time, but with his parents’ encouragement and support from Lucy’s Love Bus, he has found joy and gained confidence through more social activities like swim lessons and gymnastics when he was younger, and today through karate - he’s now an orange belt! And thanks to Love Bus’ Sajni’s Siblings program, Vivian is also now enjoying swim lessons and her time at Romp and Roll, which offers a gym, art, and music classes for kids 5 and under.
For Rachel, Lucy's Love Bus represented not just a lifeline during treatment but an enduring community, telling us, "Even after Nolan completed treatment, Lucy’s Love Bus is still here for us, continuing to give. Many organizations offer help during treatment, but Lucy's Love Bus goes a step further; they make sure that we remain a steadfast part of their community. And to top it off, they have welcomed Vivian with open arms. Knowing that we'll forever be a part of the Love Bus family, with their support always by our side, is what makes Love Bus truly exceptional."