On March 19, 2023, after completing a week of chemo-immunotherapy treatment and a week of radiation treatment in New York, Persy finally got to go home for a much-needed break. Due to his compromised immune system, we wanted to avoid commercial air travel and managed to do so with the help of the amazing people at the Corporate Angel Network.
With only two weeks off from treatment, we kept very busy and packed in as much fun as we could while back at home. Persy and Kep had a blast at a Sensory Town playdate for cancer kids and siblings, put on by a local charity organization called V for Victory. We were also able to enjoy a couple of beautiful beach days and spend a fun weekend with Mac, Harley, and Aunt Shoo Shoo before heading back up to MSK. Due to a last-minute change in our schedule, we ended up having an unexpected day off in NYC and finally got to take Persy to FAO Schwarz. It was so nice to be able to have some fun in the city and give him something positive to associate our trips with.
On April 4th, Persy began his second cycle of DICE (dinutuximab immunotherapy + ifosfamide, carboplatin, and etoposide low-dose chemotherapy). This cycle went much smoother than the first. Persy experienced very little to no pain throughout the infusions, and he only spiked a fever once, which quickly resolved with Tylenol. Additionally, he managed to avoid all the unpleasant stomach cramping and diarrhea that usually comes with these treatments (often due to him getting C. diff). Instead, Persy was able to spend his days playing with his Thomas trains, doing arts and crafts, and having Easter egg hunts all from his hospital bed. Although we didn’t make it home in time to spend Easter Sunday as a family, we were so grateful to get home late that night.
Over the next few days, we were pleasantly surprised to see Persy playing happily and having lots of energy despite dropping blood counts. This was so different from what we were used to with the previous two cycles. We returned to our clinic in Jacksonville to have Persy’s counts checked several times throughout the week, as we always do after chemo. With the previous two cycles, his ANC dropped and remained at zero for several days, inevitably landing us back in the hospital each time. This time, although his white blood count was dropping and he required several blood and platelet transfusions, his ANC never dipped below 100. This not only meant that Persy was feeling good, but also that he was able to stay home and avoid spending yet another week in the hospital.
The next week was full of celebrating as our sweet superhero turned four! We celebrated Persy’s birthday at his favorite place, the beach, with his favorite people, his family. Little brother, mom and dad, aunts, uncles, cousins, and grandparents were all in attendance for Persy’s special day. He spent the day jumping the waves, playing in the sand, and resting in the shade, and that night he blew out the four candles on his very own Thomas the Train cake. It was a beautiful, magical day, a day made for a boy as special and deserving as our sweet Persy.
It’s safe to say that he felt the love from far and wide, as so many of you reached out, sent cards, or gifts to let Persy know you were thinking of him. The birthday love continued when the wonderful people from Dreams Come True Horizon Board and Card My Yard Amelia Island surprised Persy with a big celebration, complete with the most thoughtful decor, cupcakes, and presents. We are truly grateful to each and every person who helped make our boy’s 4th birthday so incredibly special.
To cap off Persy’s birthday week, we surprised him by taking a quick trip to Chattanooga for a Day Out With Thomas at the Tennessee Valley Railroad. Our train-loving superhero had a great time riding the rails with his little sidekick, and our hearts were so full seeing the smile on his face. It was such a happy day for our whole family, and so special that we were able to give this experience to our boys.
The morning after Persy turned four, we flew to New York for another MIBG scan. We are so happy to share that Persy’s scan showed significant improvement! His Curie score, which was a 7 on his last scan in March, is now a 3. This means that 4 of the spots that were previously lighting up have now resolved. Notably, 2 of the 4 resolved tumors are ones that were not treated with radiation. This gives us great encouragement that the new chemo-immunotherapy is working, and the improvements were not just from the radiation treatments. The report also stated that 2 out of the 3 remaining sites have decreased. This is exactly what we have been praying for, and we are giving all glory to God!
On May 3, 2023, Persy began a third cycle of DICE in New York. Although it doesn’t get any easier to leave our home or our sweet Keppy behind, we are rejuvenated knowing that these treatments are working. Sometimes the things we have to do on this journey can feel impossible, but in the end, every step brings us closer to complete healing for Persy. We have faith in the Lord, who continues to renew our strength and whom we know has big plans for our precious, persevering Persy. 🙏
Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24