“Our journey since has been full of setbacks, obstacles, tears, love, and miracles.”
In January 2020, at 4.5 months old, Kian was diagnosed with a large, aggressive brain tumor called an ependymoma. It was pressing against his brain stem, causing severe hydrocephalus, and close to taking his life. Within weeks, his tumor and a devastating aneurysm during surgery, left us with a son who could no longer speak but could only breathe with a tracheostomy, could no longer eat without a gtube, could no longer move more than a few small twitches of the hand, could not survive without a shunt, and for many days could not go more than a few hours without intense pain or vomiting.
Kian’s journey over the next 2 ½ years was full of obstacles, setbacks, tears, love, joy, and miracles. He endured over 250 nights in the hospital, 16 surgeries, 30 rounds of radiation, five rounds of intensive chemo, and seven months of a metronomic chemo regimen. Throughout it all, we watched in awe as Kian continued to smile, love, laugh, and push to live as much of life as possible in the time that he had. By April 2022, he was taking steps in his gait trainer, throwing balls every chance he had, drumming and vocalizing to his favorite songs, and living a life we thought might be impossible in those months after diagnosis. We were humbled and forever inspired by the strength he showed in his determination to move, communicate, and walk.
On September 10th, 2022, Kian passed away at home, held by his family on his favorite window chair next to the cherry tree he would gaze at through every change of season. He left behind a family devastated by his loss, but strengthened by his bravery, love, and light. Kian’s strength, smile, and heart were so profound that we know we will spend the rest of our days trying to share the light he brought to this world and the love he so generously shared with us.
We are forever thankful for all of the amazing humans who came into Kian’s life to help care for him, contribute to quality of life, and support our family as we focused on enjoying each moment we had. There are amazing doctors, nurses, therapists, and support organizations in Central New York and we are so grateful for their love and care. We were carried by our community and completely humbled by all the lives Kian impacted.
He will forever be missed.