The past three months have flown by as our little warrior continues to fight. On Sunday, May 7th Persy finished his third cycle of DICE, and we all flew home the following evening. P spiked a fever on Friday of that week and was admitted to Wolfson Children’s Hospital, per protocol. By Sunday afternoon his ANC was high enough for him to be discharged. As usual he required some blood and platelet transfusions over the next week, but was still feeling good and able to enjoy time at home.
The following week was full of fun when some of our nearest and dearest friends came to visit. First we had a very special few days with the Stewart/Shell family. Persy and Kep got to play with their buddies Liam and Vivi and even got some beach time together. Next a visit from our sweet Katie and Myles filled the rest of the week with even more love and laughter (and of course another beach day).
The next week we flew back to New York for the fourth cycle of DICE. Although the first day went smoothly, Persy began to have a reaction known as toxicity after receiving his chemotherapy on day two. The doctors thought it was a response to one of the chemo drugs, ifosfamide. Due to this reaction the immunotherapy infusion had to be postponed until after chemo and the infusion rate for the final dose of ifosfamide was slowed way down.
Because we had to spend a couple of extra days in the hospital, Persy’s ANC had already dropped to zero by the time we were able to fly back home, leaving him vulnerable to even the most common viruses. With P unable to travel home safely on a crowded airline flight, Dada reached out to AeroAngel, knowing it would be a long shot to get a last minute flight. True to their name, this “angel” airline had a private flight set up for us in a matter of hours, and once again God showed Himself to us through the kindness and generosity of others.
Back at home Persy’s counts were very low and he required several transfusions of blood products over the next few weeks. However he never spiked a fever so we were able to avoid the hospital and stay at home. Although P was feeling pretty good, he was also having some foot pain which the doctors thought might be neuropathy. He said it hurt when he put his heels down and began constantly walking on his toes. Despite this, he was able to enjoy several pool days, lots of playtime with Kep, and a fun day at the zoo. More fun followed when our cousin Cristi came to visit from Miami, and we spent many special days swimming at the pool and soaking up the sunshine. After a great 4th of July with family we flew back to New York for Persy’s next set of diagnostic scans. While there, P got to spend a few hours exploring the city with his friend Graham who was also visiting nearby.
On July 5th Persy had an MRI of the Brain which came back clear. On July 7th he had an MIBG scan and bone marrow biopsy and aspiration. Unfortunately Persy’s MIBG scan showed several new areas of disease. His curie score which was previously a 3 is now an 8. There are 3 new spots on the arms (proximal right humerus and bilateral distal forearms). There are also 2 new spots on the legs (right distal femur and proximal right tibia). In addition, a clump of neuroblastoma cells was found in one of the four bone marrow aspirations.
After receiving this news we were understandably devastated. To make matters worse, within a couple of days Persy began to have severe pain in his right leg which we knew must be disease related. We also began to see new lumps forming on his right clavicle and his right shin. As we waited for the team at MSK to discuss and schedule Persy’s new treatment plan, we tried to manage the pain at home under his doctor’s advice. However, we quickly realized it wasn’t working and ultimately ended up at our home hospital anyway. There Persy received some IV medication to help control his pain. The next day we met with the pain team and came up with a new plan for managing P’s pain at home. We were discharged later that day and received word from MSK that we would begin treatment the following week.
At this point Persy had completely stopped walking due to the pain in his right leg. However, between pain medication and lots of distraction and TLC we were able to keep his pain mostly at bay over the next few days. In fact, P spent the weekend making Mama a nervous wreck as he climbed, crawled, scooted, and even insisted on walking around the house despite obvious difficulty (and comparing himself to “an old lady”). His bright, warrior spirit continued to shine through as he pushed through the pain and managed to enjoy a beautiful weekend playing at home with family. This is just one of Persy’s many special gifts. No matter how small we make his world, he just fills it up with his incredible happiness and light.
As we face the crushing news of these scans and all it means for Persy going forward we are overwhelmed with sadness, anxiety, and fear. And yet at the same time we are also full of hope and trust in the Lord. While this is not the path we would have chosen for our precious boy, we still faithfully believe that this is the path to complete healing for him. We take immense comfort in the knowledge that so many others are praying for healing for Persy and that God, the ultimate healer, is in control.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28
