Helping families battle for hope! Seth was diagnosed the day after Christmas in 2018. He had just turned 4 years old. Within 48 hours he had his first surgery to place his port and chemotherapy was started. He was in the hospital for about 2 weeks. Over the next 10 months he was in and out of the hospital and did tons of chemotherapy. In October 2019 Seth relapsed in his spinal fluid and his bone
marrow. This was such hard news to hear. The team at Norton Children’s started prepping his for a Bone Marrow Transplant. His Brother, Max 7 years old, was selected as his Donor. The treatment to prep Seth for a BMT was debilitating, he could no longer walk. April 15th 2020 2 of my sons were in Surgery to perform the BMT. My 3rd son waited with us. Seth had horrendous side effects and was in the hospital for almost 70 days. Soon after being released from the hospital he relapsed for a 2nd time. (around day 85)
July 2020 we transferred his care to Cincinnati Children’s Hospital. The team there immediately prepped for a CarT infusion. Seth’s T Cells were extracted and they were then processed in the lab and programmed to kill all B Cells. Seth received this treatment August 31st, 2020. This treatment was so much easier than the BMT. He was in remission for about 5 months. He relapsed for a 3rd time in February 2021. At this point the Cincinnati team decided to do a 2nd BMT. They found an anonymous donor from Be The Match and did a BMT in May 2021. This BMT was a very hard treatment and we were inpatient for about 2 months. We then had to live in Cincinnati for another 2 months in order to stay close to his team. A total of over 4 months away from our home. Again the BMT did not last long and he relapsed around day 80 for the 4th time in August 2021. At this time our treatment options were quickly running out. We had a meeting with his primary pediatrician and his care team in Cincinnati. We discussed Seth’s quality of life. We discussed how much more treatment he could handle. We discussed things parents should never have to consider. It was decided that Seth was a fighter. We put him on an intense chemo regimen to keep him in remission until we could find a clinical trial. February 22, 2022 he received Humanized CarT clinical trial at Children's Hospital of Philadelphia. Currently, he is in remission. He is living life! He still has DAILY health battles, but he does not let them get in his way of having FUN! He is starting 1st grade and will be attending school full time for the first time! We live everyday to the fullest knowing that tomorrow could bring another relapse and very hard choices. We battle through the daily side effects of the treatment he has faced but remain grateful that Seth is still here with us. Live For Today and Hope For Tomorrow!
