McKay is a video game connoisseur, as he has a lot of time on his hands with treatments and not always being able to leave home. He love playing Zelda, Mario games, Hollow Knight, and Splatoon, among other games. He also loves to play board games with his siblings. When he has time to just sit and talk with his siblings, his personality comes out and he can get silly. Those are my favorite moments, because we don’t get to see that all the time. He loves soccer and baseball and riding bikes, but those activities have taken a backseat for now.
McKay was diagnosed with stage 4 neuroblastoma in Feb 2014, when he was 3. After undergoing 17 months of grueling treatment, he attained NED (no evidence of disease) in July 2015. He loved getting back to “normal” kid life, but unfortunately, after 5 1/2 years of being NED, the cancer came back with widespread, metastatic disease in Feb 2021 when he was 10, seven years to the exact weekend as his original diagnosis. He’s been fighting relapse nonstop since then, and had a huge setback in January 2023. He’s awaiting the opening of a first-in-human trial, in hopes of being able to kick the cancer down with a treatment that his body hasn’t yet seen and will hopefully be effective.
Prior to his diagnosis, over a 3.5 week period, he kept having “off” things happen, and it wasn’t until I took him to the doctor for the 4th time in that time span that it was discovered that he had cancer.
McKay’s treatments have been extensive. Frontline treatment included 5 rounds of chemo, stem cell harvest, tumor resection surgery, MIBG therapy, stem cell transplant, 14 rounds of radiation, immunotherapy, and 2 years of maintenance drugs. Relapse treatment has included 21 cycles of chemo/immunotherapy, 28 cycles of radiation, 2 rounds of MIGB therapy, 3 cycles of oral chemo, and now awaiting a CAR-T therapy trial to open. Due to his treatments, McKay has bilateral hearing loss, and he is small and kind of fragile, so being active like he used to be is difficult.
The family dynamics of both original diagnosis and relapse have been huge. We always focus on “living in the now”, because tomorrow is never promised. We try and focus on our other kids’ strengths and passions so they know how important they are in the shadow of cancer, but know that that isn’t always possible.
McKay is a special boy that rarely, if ever, complains about everything he has to go through. He may be quiet at times, but you know if he freely talks to you, you are someone special, too.
Hope Session by Elena Streeter Photography