On May 5, 2022, six days after being discharged from the hospital for cycle 5 of chemotherapy, Persy spiked a fever of 102. This was something we were expecting and also dreading because we knew it meant another hospital stay of at least a few days. The protocol is that if he spikes a fever of 101 or higher we have to immediately take him to the emergency room where he can get antibiotics in order to fight any possible infections and have blood drawn to check his counts. If his absolute neutrophil count (ANC) is less than 100 he is admitted to the hem/onc unit from there. This being day 10 of his chemo cycle, we knew Persy would be in his nadir (post chemo lowest point in blood counts) and therefore be admitted. This is the same thing that happened after cycle 4, and we know that chemotherapy has a cumulative effect.
Thankfully, P’s fevers resolved within 24 hours and his blood cultures continued to come back clear of infection. Still, we were stuck at the hospital for a few days waiting for his ANC to reach 100. During cycle 4 his ANC remained at 0 for a few days, which had us hoping for the best but preparing for the worst. Although we are grateful to be at the hospital when Persy requires medical care, it is difficult to be there when he is feeling good and missing his house and little brother so much. On Sunday, May 8, 2022, when they checked his counts at 3 AM his ANC was still only up to 40. Seeing how well P was feeling and knowing we were anxious to go home, the doctors were nice enough to order a recheck around 2 PM that same day. To our surprise and delight his ANC had jumped up to 100 and we were immediately discharged. What a blessing it was to be able to go home on Mother’s Day so that Mama could spend the afternoon with both of her boys.
As usual, Persy felt better and better as the days went on and his counts continued to recover. However, clinic labs were still showing that his hemoglobin was low, just above what it would need to be to require a blood transfusion. We returned to clinic multiple times during this past week to recheck his counts and be sure he was ready for his upcoming diagnostic scans. Despite all of the doctor visits, Persy has had a great month. In addition to getting some much-needed extended time at home, he has had more energy this month than he has in a long time which has been such a joy for us all to witness. Last week P even got to attend the end of year luau party at his preschool, which he had not been back to since the day we ended up in the hospital last November. It was such a special day getting to see all of his teachers and friends from school who have been praying unceasingly for our sweet boy for all these months.
On Friday, May 20, 2022 Persy underwent anesthesia again for the scans. These are follow ups to the original scans he had back in November which were used to diagnose him with stage 4 neuroblastoma. In addition to a bone marrow aspiration, the doctors also performed an MIBG scan and CT scans of the head, chest, abdomen, and pelvis. Everything went smoothly; although Persy did require a blood transfusion during the process due to low hemoglobin. He did great with the anesthesia and was a champ during the whole process. He even woke up in a pretty good mood and snapped back to his usual energy level almost immediately. Since being home he hasn’t complained of any pain at the site of the bone marrow aspiration (lower back). On Monday, May 23, 2022 we will meet with P’s oncologist to discuss the results of the scans. As we wait for these results, our hearts are filled with gratitude for all of the amazing progress Persy has made thus far, and hope and faith in the Lord for all of the blessings yet to come for our little warrior. 🙏💛
