Persy began his proton radiation therapy on August 29, 2022. Each day we had to arrive at the New York Proton Center at 7:15 am. Mama or Dada got to hold Persy while propofol was administered through his port and he fell “asleep” in our arms. From there, the radiation treatment took about 30 minutes. Nurses brought Persy out to us in the waiting room. He was groggy, cranky, and hungry upon waking from the anesthesia. While hooked to a pump (to keep fluids running through his port between treatments), we spent the next 4 hours trying to keep P “busy” and entertained and most importantly, not thinking about how hungry he was. At around noon each day, we would repeat the process again: go to the “spaceship room,” get propofol in Mama or Dada’s arms, 30 minutes of radiation treatment, wake up groggy and cranky. This would continue for the next 7 days (minus the 3-day weekend).
By day 2, Persy was used to the routine and mostly had a positive attitude about things. He bounced back from the anesthesia fog quickly each day and was always happy to go back to the hotel after and “drink milk.” He maintained his high energy levels throughout the week, as well as a decent appetite. Still, he made it very clear that home is where he most wanted to be. On Friday following his treatment, Persy’s port was de-accessed and the three of us rushed straight to the airport. We were lucky enough to make a flight back to Jacksonville and spent a restful Labor Day weekend at home with Kepler. On Monday night we flew back to New York to resume treatment on Tuesday.
Upon finishing his final radiation treatment on Wednesday, September 7th, Persy got to ring the bell and celebrate this huge milestone. We are so relieved to have one more treatment behind us and be one step closer to complete healing. As always Persy handled the past two weeks like a total champ. His resilience, strength, and positivity are an example to all of us, and we continue to follow his lead. After only 4 short days at home, we fly back to NYC tomorrow to begin the next HITS cycle on Monday, September 12th. Although we are filled with anxiety for this second cycle, we ask the Lord to place His healing hands upon Persy, protect his little body and give him strength, and carry him through this treatment like He has with each one before this.
