Persy has had a great week at home. After being discharged from the hospital on April 18, 2022 he still had some pain at the incision site, but we were able to manage it using oral painkillers. By Friday April 22nd, he was feeling so much better and able to stop the pain meds altogether.
This timing could not have been more perfect. Persy spent a beautiful, fun-filled weekend surrounded by family. He got to enjoy a pool day, countless golf cart rides, sandbox fun, an easter egg hunt, and a 3rd birthday party with ALL of his cousins (and of course some baby sharks 😉). We are so thankful that our boy felt good enough to enjoy this precious time with his family.
On April 25, 2022 (Persy’s third birthday) we went to clinic to have labs drawn. As expected P’s counts were all good. So on Tuesday, April 26th (just one week after being discharged) Persy was admitted to the hem/onc unit once again to begin cycle 5 of chemotherapy.
Cycle 5 consists of the same two chemo drugs as cycle 3: cisplatin and etoposide. The cisplatin is known for causing pretty severe nausea, which P experienced during cycle 3. This time, he is again dealing with extreme nausea during the infusions and after. This affects his appetite, as well as his mood. In order to combat the nausea, P is taking zofran and steroids. Unfortunately the steroids cause him to be pretty irritable, which leaves us missing our sweet, happy boy.
In addition to the nausea, cisplatin can also cause hearing loss. In order to monitor this, Persy had a baseline audiogram before cycle 3 and then a follow-up audiogram after cycle 3 to see if there was any damage to his hearing. The test showed that he does have some mild to moderate high frequency hearing loss but nothing that would require hearing aids at this point. After much discussion with our oncologist we decided to add another drug, sodium thiosulfate, to P’s treatment for this cycle in order to protect his hearing. There are compelling studies which show that children who received this drug in addition to cisplatin were less likely to have hearing loss. We pray this is the case for our sweet Persy.
Tonight P will receive his final infusion for cycle 5, followed by 12 hours of fluids. If all goes according to plan we will be able to go home sometime tomorrow, April 29, 2022.
Completion of cycle 5 means the end of the induction stage of Persy’s treatment plan. In the next couple of weeks he will undergo anesthesia again (most likely twice) so that he can get another CT scan, an MIBG scan, and a bone marrow aspiration. These diagnostic tests will tell us how much neuroblastoma is left in Persy’s little body. This will be a big decision point depending on how the scans look. We are depending on the chemotherapy to kill all of the neuroblastoma in the metastasized areas.
As you continue to storm the heavens with prayers for Persy, we ask that you pray specifically for no more hearing loss, no more nausea, good clear scans that amaze the doctors and allow us to move on to the next stage in treatment, and of course strength and comfort for our sweet boy. Please also pray for wisdom and clarity for the medical staff and for Mama and Dada as we continue to make big decisions for our precious P.
As always, we are so very grateful for each and every prayer and warm thought. All along you have shown us that we are not alone on this journey, and that has been such a source of comfort for us. Thank you for continuing to show us God’s amazing love through your unwavering support and love for our family. 🙏💛
