Our little miracle boy...

Enjoying this lovely fall weather

We found out today that the experimental protocol, UH-1 that Payton was on during his treatment has been closed due to serious neurotoxicity and gastrointestinal complications that occurred during treatment. Of the 53 children that have been enrolled, six of them have experienced Grade 4 complications, which are serious life threatening complications and three have experienced Grade 5 complications, which sadly means the children did not make it through treatment and have passed on as a result of the treatment, not the cancer. The head of the study group has decided to reduce the chemo doses on three of the five chemo drugs that are part of this protocol. The chemo drug Doxorubicin was directly linked to the heart issues that caused two of the three deaths. We witnessed first hand the toxicity of these chemo drugs and this regime. Honestly, there were times I watched Payton and wondered and prayed that he would make it through it. There were times I felt Payton was near his death bed and then brought back again.

With that said, we feel so lucky to have gotten through the chemo regime with minimal complications. I remember Dr. Bowman making a comment after Payton’s first round of chemo regarding the treatment protocol, he said “It’s like they are trying to hit a home run out of the ball park.” There’s been a lot of effort placed into finding the right balance between hitting these kids hard without having the treatment itself take their lives. I’m very grateful today as I know we were watched over and blessed that Payton survived the treatment he received without any major complications. Payton has recovered so nicely and I keep hoping that we don’t see any major side effects in the future (i.e., muscle, vision, dental, heart problems, secondary cancer, etc.). I often wonder whether subjecting Payton to the harder protocol was the right decision. I continue to pray to see good results and continue to believe that Payton’s fate is in the Lord’s hands. I am once again reminded of the true miracle that Payton is today.