“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, and 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.
Our journey since has been full of setbacks, obstacles, tears, love, and miracles. After close to 250 days in the hospital, 16 surgeries, 30 rounds of radiation, three rounds of intensive chemo, and now six months of metronomic chemo to fight a recurrence that has deemed him to be considered incurable, we are still walking forward, holding onto hope, and giving thanks for every moment we get. Just a few weeks ago we had an MRI that convinced us to believe in the impossible. Kian’s metronomic treatment is not only keeping him stable, it is shrinking his tumors, giving us the potential for prolonged survival and the chance to live to see a cure. Kian is now making noises, taking steps in his gait trainer, throwing balls, and having fun as a two-year-old. We are excited to take him to his first Paige’s Butterfly event in person and hope the money raised will help Kian and families like ours see a cure in their lifetime.