Taylor

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!

Update for Taylor's 12th Birthday - July 2025

• Taylor is currently seven years out from treatment, an incredible and resilient warrior whose journey we are honored to continue following and sharing with our community.

• In May 2024, Taylor's family experienced a scare when a new lesion developed on his MRI, six years out from his initial treatment. His medical team felt the lesion had a significant chance of being a secondary cancer due to the nature of his initial cancer therapy. Given Taylor's medical complexity, the decision was made to pursue a "watch and wait" approach. When Taylor was verbal, he had always expressed a wish to visit Alaska. With the possibility of cancer once again presenting a challenge, his family discussed taking a rather long bucket-list road trip with his medical team.

• After another MRI in late July (2024) showed some growth of the lesion, though not as extensive as when he was initially diagnosed with ATRT, his medical team gave the green light for the Alaskan road trip. One week later, his family packed their vehicle and embarked on a month-long, 11,000-mile round trip from Illinois. Taylor thoroughly enjoyed the mountains and even had the opportunity to meet members of his favorite TV show, Alaska the Last Frontier! He experienced and participated in so many things, and his family hopes to someday do it again.

• Taylor has had three MRIs since that trip, and thankfully, the lesion has since stabilized. His medical team now believes that the lesion is likely more indicative of changes from radiation, despite his radiation treatment occurring in August-September 2018. Taylor has since redecorated his room with pictures, maps, and souvenirs from his Great Alaskan Adventure.

Continue to follow Taylor's journey on his Facebook page: Taylor Tuff