It has been a busy few weeks! We flew to Atlanta January 31, 2022 where we were greeted at PDK by Mudsy and Aunt Ween. Persy was feeling great and full of energy as usual. He was able to enjoy some much needed quality time with his great aunts and uncles, and his best bud, Ella Parker. The following day, P was admitted to CHOA at Egleston where we spent the night in the Hematology/Oncology unit so he could get lots of fluids.
On February 2, 2022, he was transferred to the PICU where he would remain for the rest of his stay. Despite being very hungry after having to be NPO (nothing by mouth) for over 12 hours, Persy remained happy, upbeat, and talkative as we waited for him to be sedated. Due to the high levels of radiation from the infusion, his room had to be specially prepped with paper and plastic covering every surface. Additionally his bed was surrounded by lead shields, with a radiation detector hanging overhead. Once Persy was successfully sedated, a Foley catheter was placed, as well as an NG tube and two IV’s (one in each hand). Late that afternoon, he finally received his MIBG infusion, which took about two hours to complete.
His initial radiation level was 38 mrem per hour. This number would have to decrease to 7 in order for P to be discharged, which we were told would take a few days. Thursday was a quiet day with Persy remaining sedated and “asleep.” Truthfully, this was hardest on Mom and Dad, who desperately missed their happy little chatterbox but had to stay mostly out of the room due to the high levels of radiation Persy was emitting. One doctor explained it by comparing P to an xray machine shooting radiation out at everything around him. Each time anyone entered the room we had to put on full protective gear including gown, gloves, and booties. We also had to wear dosimeters to track the amount of radiation we were exposed to throughout the process.
On Friday, Persy began to “wake up” a little from his sedation. He was very disoriented and cried for Mama and Dada, but always calmed right down when we came into the room. He was also able to enjoy a visit from the musical therapist and even played a maraca along to her guitar. By that evening Persy’s radiation level had dropped to below 8 mrem so we knew we would be able to go home the following morning. The nurses had planned to remove his Foley catheter early Saturday morning, but it turns out that wasn’t fast enough for P. In the middle of the night he pulled his diaper down and told the nurse “This! Out! Now!” while pointing at his catheter. The nurse kindly obliged and when she had taken it out, our sweet little guy simply said “thank you,” before rolling over and going back to sleep. 🥰
After being discharged from the hospital, we headed back to Mudsy and Pop Pop’s house. Persy was so happy to get out of there and see his family, especially Kep. Still, he wasn’t quite himself those first couple of days, struggling with nausea, vomiting, and diarrhea. His days and nights were all mixed up, and to make matters worse we had to wake him up every 4 hours (even through the night) to give him medicine that protects his thyroid from the radiation. In addition to all of this, there are many precautions we have been taking in order to protect ourselves (and Kep) from the radiation that P is still emitting.
After a couple of days, Persy was right back to being himself again: happy, talkative, and full of energy. On Monday the 7th we flew back to Jacksonville and were all relieved to be home again. At our clinic appointment that Wednesday the nurses informed us that P’s levels were all great! Despite this, the doctors let us know that they would still be doing a stem cell transplant the following week. Although it was clear from his levels that his bone marrow was not hit too hard by the MIBG therapy, the doctors have found that it is best to go ahead with the transplant in order to ensure that P’s counts are “bumped up” for his next cycle of chemotherapy.
On February 10, 2022, we celebrated Kepler’s first birthday together at home. What a blessing it was to have this “break” from hospital stays at a time when we needed it most! Persy had so much fun helping his brother blow out his candles and smash his cake! 🎉🎂
This past Tuesday Persy was admitted to the hospital again. After receiving lots of fluids, he had the infusion of stem cells. This was a simple process in which the stem cells (1 of 5 bags which were previously harvested) were given through P’s existing port. The idea here is that the stem cells will regenerate and make new bone marrow which will then boost his immune system. Following the infusion he received 12 more hours of fluids before being discharged. As always, our boy handled it all with grace and a maturity far beyond his 2 years.
Because there have to be 35 days between the MIBG infusion and the next cycle of chemo, Persy will get a little break from treatments this month. He is scheduled to begin cycle 4 on March 8th. In the meantime he will continue to go to weekly clinic appointments to check his counts.
This time at home is so precious, as home is where Persy thrives. These are the times he is able to rest, recover, and have some sense of normalcy and routine in his life. These days at home are what give him the strength to get through each step in his treatment. We continue to thank God daily, and ask that He give Persy the strength he needs on this long, difficult journey.
BIG Little Victories
- Persy is feeling good and full of energy!
- Persy’s counts have stayed up and he has not had to get any more platelets or blood transfusions.
- Persy’s MIBG infusion went well and he did great with the sedation.
- Persy celebrated his baby brother Kep’s FIRST birthday at home with his family!
- Persy was a CHAMP at clinic this week and let the nurses access and deaccess his port without flinching.
- For Persy’s counts to stay up and for him to continue to remain fever free so that he can stay home and not have to go back to the hospital before cycle 4.
- For Persy to continue to feel good, eat well, and have lots of energy.
- For Persy to remain happy and positive despite all that he has had and will have to endure.
- For Persy’s body to continue to respond to the chemo and specifically that the chemo obliterates all of the metastatic cancer sites in his body.
- For Persy’s cancer to be attacked by the chemo, but for his precious body to be protected from the damage caused by the toxic chemicals.
- For continued strength for Persy’s mama and dada and his whole family.
But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not grow faint. - Isaiah 40:31