Finn and Mack are seven-year-old twins in the second grade. Finn is a “pocket of joy” who loves everyone he meets, according to his mom and dad, Shannon and Tim. Mack is the adventurer, who believes the faster, the better! Both boys love riding their 4-wheelers, fishing, and spending time with their friends and family. Watching them run, play, and climb, you probably wouldn’t guess that they spent the first five months of their lives in the neonatal intensive care unit (NICU), born at just 24 weeks old, and 1lb 1oz each.
As NICU babies, the boys received regular medical testing to ensure that their growth and development were progressing. One test that they received was a retinopathy exam, where the eye doctor checks to ensure that the blood vessels in the eyes are developing the right way. It was during one of these routine eye exams that the doctor found tumors in Finn’s eye, and informed Shannon and Tim that their baby had retinoblastoma, a rare type of eye cancer that develops in early childhood.
“When somebody tells you that your child has cancer, your whole world changes that instant. Your security in the world is gone. The hope that you had disappears,” Shannon shares of that moment.
Finn quickly underwent laser treatments and cryosurgery, but the tumors continued to grow. The next step was chemotherapy. At less than 40 weeks old, and not even up to 5lbs yet, Finn had surgery and began chemo treatment; after one and a half years of treatment, the tumors stopped growing. Sadly, Finn relapsed 8 months later, and tumors began growing in his other eye. He finished chemotherapy around the boys’ third birthday, and is now in remission. However, the late effects of cancer and treatment, especially on such a small body, have had lasting impacts for Finn and his family.
“The side effects that children get from cancer and its treatment are brutal and mean,” said Shannon, referring to a long list of Finn’s late effects, which include: the loss of the majority of his vision; hearing loss; neuropathy of the feet (weakness, numbness, and pain); weakness throughout the right-side of his body; epilepsy; Raynaud’s syndrome (fingers and toes feel numb and cold in response to cold temperatures or stress); and serious cognitive and developmental delays.
After Finn’s diagnosis, Shannon and Tim had to sell their home in central Massachusetts in order to be closer to Finn’s medical team. They moved into the one-bedroom in-law suite at Shannon’s mother’s house, closer to their Boston hospital, and have called it home since. Shannon has been living in fight or flight mode - making sure Finn is fighting for his life and that she’s fighting anything or anyone who stands in their way. Tim works full-time at USPS to ensure that the family has the medical insurance and funding that they need. And Mack, who has tagged along at most of Finn’s medical appointments since day one, going through it all right by Finn’s side, is “the best brother.” Throughout the years, he has stepped up as Finn’s protector, teacher, and confidant, always there to help Finn when he needs it. While Shannon sees the positives in Mack having a brother with complex medical needs - he has so much empathy and compassion - there are also challenges. Mack has very high anxiety, and it worsens if Finn and his parents ever have to be away for overnight hospital stays; Mack texts and checks-in constantly - “Is Finn OK? Are you OK? When can I come and visit?”
While Shannon and her family continue to advocate for Finn’s quality of life every day, they no longer have to do it alone. Shannon remembers fondly the day that her contact at Camp Casco texted her information about Lucy’s Love Bus. Soon after, Shannon joined the Ilene’s Caregivers Support Group where she “found her people.” Through the program, the family also enjoyed a respite weekend getaway, which Shannon described as an escape from reality, where the family could have fun and just be, without thinking about doctors or hospitals.
Shannon was also able to find an activity that would benefit both Finn and Mack - weekly sessions at Kidstrong, which is funded by Lucy’s Love Bus, thanks to donors like YOU! KidStrong incorporates movement and fun into a learning process that focuses on character, physical, and brain development through weekly 45-minute, age-based classes. While both boys enjoy the physical fitness and social parts of the classes, the classes have also helped Mack with his anxiety and Finn with his confidence!
While having a child with cancer can bring with it dark days, Shannon wants the Love Bus community to know that Lucy’s Love Bus helps to shine a light on her family during these times, telling us, “it’s such a unique organization in that it treats the whole family. It brings families together to make memories, enjoy special experiences, and to create joy among all of us.”
Thank you to Love Bus donors and supporters for helping to deliver comfort and quality of life to deserving children like Finn and Mack, and their parents, Shannon and Tim!
