Taylor's journey started his 5th birthday. His first MRI showed 3 tumors in the skull, another MRI showed 2 more additional spots in his spine.
He was treated emergently. Started with chemotherapy less than a week after his crainiotomy. Started radiation within 2 days post op. He endured 9 months of chemotherapy and 36 doses of a combination of photon proton therapy.
He has a rare complication of treatment called Disseminated Necrotizing Leukoenchephalopothy. We continue to manage late effects that pop up.
Over all, this little man of ours has taught us so much about life than I could ever imagine. He continues to inspire us and challenge us.
Update for Taylor's 9th Birthday - July 2022
Taylor is currently inpatient in St. Louis Children's Hospital due to his 3rd Pulmonary Hemorrhage. But, he has made great strides in his recovery and is currently slated to get discharged on his birthday. Had he stayed, this would have been his 3rd birthday in 4 years on the PICU floor. Great job to Taylor for being the "Tuff" guy that he is and show everyone that he is NOT spending his 9th birthday in the PICU.
Update for Taylor's 10th Birthday - July 2023
Taylor is celebrating 4 years in Remission this summer! He recently went up into the St. Louis Wheel and he really seemed to enjoy that! Lots of smirks from him!
He is doing well! He has had no hospital admissions in the last year (after being discharged on his birthday last year). He is starting to have fewer specialist appointments and more therapy appointments.
Taylor has been learning to use an Eye Gaze communication device. It is like a fancy iPad that has technology that can track his eyes and tell what buttons/words he is looking at. He is in the very beginning stages of learning, but he is doing well so his family has ordered one for him.
Taylor communicates well with his facial expressions and is very consistent in displaying pre-teen disapproval! Taylor will be entering the 4th grade part time in the fall, while simultaneously hitting speech therapy harder!
His family shares, they are excited to see what the future holds for him!
Follow his journey here: https://www.facebook.com/groups/460185181123863