Our son Peyton was diagnosed with neurofibromatosis (NF) at 6 months. By age 3, an MRI showed he had tumors on his optic nerves causing his vision to deteriorate. He started chemotherapy in hopes of saving his vision, but unfortunately it didn’t work. He continued losing his sight. He was on and off chemo for the better part of 5 years. In June 2015 Peyton was diagnosed with a tumor on his brainstem. He was suffering neurologically and having difficulty with everyday tasks like eating, drinking, walking and talking. Life was looking pretty bleak. Our doctors told us because he has NF, our treatment options were limited. Surgery was not an option and radiation could possibly help short term, but the tumors would come back and return more aggressive. There were no treatment options to help save our son; only short term fixes. Doctors said for nearly all children this is a fatal diagnosis. His time with us was limited.
Then our doctors in Denver began researching clinical trials across the United States. There happened to be a clinical trial taking place at Texas Children’s Hospital in their Developmental Therapeutics Program, and they had a spot open if Peyton qualified. We quickly packed our bags for Houston knowing this was really our only option for getting much needed help for our son. After a few days of tests and meetings with doctors, we were accepted into the trial near the end of June 2015. Since then, Peyton has been getting stronger and stronger each month. He’s running and playing and enjoying life as a 9 year old boy should! It’s really given him back his childhood and it’s given us a sense of hope. A hope a few months ago we didn’t have! Texas Children’s and all their staff members have been wonderful to us. They have helped us to feel welcome and supported even so far from home. Traveling back and forth each month is rough, but we are so very happy with all the wonderful treatment and care Peyton gets here. We are thankful there is medicine available for our son and we pray it continues to work. We hope things keep getting better and better for our Peyton.
Through it all, Peyton’s attitude has remained positive! He never complains and takes everything that comes his way with great spirit and strength. I’m always amazed at how he battles his way through all adversities. It’s an honor to be his parents.