Benjamin is a born storyteller. He is happiest when he is in costume acting out a grand adventure. He loves animals and Lego and wants to be a “zoolineer” when he grows up (an engineer that helps animals). He is very social, a loyal friend, and the best big brother in the world.
Our son Benjamin was diagnosed with ALL in February of 2019 at the age of 4. He finished treatment on June 5th, 2022. Before his diagnosis, he experienced a series of illnesses including an ear infection, the flu, and strep throat. One morning he woke up and couldn’t walk due to leg pain. Blood work and additional testing at our children’s hospital eventually led to the diagnosis of ALL. His diagnosis process was long due to his presentation with necrotic bone marrow.
Benjamin underwent the very high-risk protocol due to bone marrow necrosis at diagnosis. This protocol included Frontline chemo over the course of the first year and maintenance chemo for another two and a half after that. His medication was administered orally, via his port, and into his spinal fluid. Our greatest struggle throughout treatment has been the mental/emotional impact. Benjamin suffers from PTSD because of the challenging diagnosis process. This anxiety has affected his daily functioning. We have also been extremely isolated due to the combination of his compromised immune system and Covid. We’ve all struggled greatly with the isolation.
We had just moved to NY when Benjamin was diagnosed, and so we went through the treatment process without friends and family to help. We learned to rely entirely on ourselves and I think our strength as a family unit grew. And of course, we will never take a moment together for granted now that we know how quickly the world can change. We definitely have a sense of both gratitude for Benjamin’s success in treatment and recognition of every day together as a gift.
Benjamin is my hero. His resilience and adaptability continue to amaze me every day.
Hope Session by Heidi Heaphy Photography | Facebook | Instagram