Since we last updated, Persy has completed two more cycles of the HITS protocol. He began cycle 3 on October 24th, and was lucky enough to have a small break between treatments for Halloween weekend. In an effort to keep life as “normal” as possible, Mama was determined to have the whole family together for some trick-or-treating fun. So for the first time since we’ve been traveling to New York for treatment, we were able to bring Kepler up to be with us. We got to trick-or-treat in Westport with our sweet cousin Kerri before heading back to the city to finish the treatments.
In addition to dealing with the usual onset of diarrhea, P also continued to have severe pain during the immunotherapy infusions. After speaking with his bedside team, we came up with a plan that would hopefully help to minimize the pain he is having during infusions for future cycles. For most of the trip Persy felt pretty well, and was able to enjoy time with his little brother. One day, Mama even took the boys to a “play apartment” that is provided by a local organization called Candlelighters NYC. This wonderful organization supports families like ours who have kids that are fighting cancer and are seeking treatment away from home in New York City. The boys had so much fun, and it was great to have a safe place to take them to play. Overall it was wonderful to be together as a family this trip, and definitely made it a little easier to be away for so long. On November 3rd Persy completed cycle 3, and we were all so happy to get home in time to celebrate Dada’s birthday on the 6th.
The next four weeks at home were so full of love and family, and the Lord knew that’s exactly what our hearts needed. We spent a fun-filled week visiting with Aunt Stephy and Kolby in Jacksonville. On November 19th, the anniversary of the day Persy was diagnosed, we celebrated our gratitude with the first ever Burnette Family Fun Day, a tradition we plan to continue every year. For Thanksgiving we traveled to Newberry, Florida and got to see our Busto family who we haven’t seen in almost a year. We even managed to make a quick stop on the way home to visit with Gank and Uncle Tom. The next morning we headed to Thomasville, Georgia for the weekend to watch Harley dance in the Nutcracker. Back at home we began preparing the house for Christmas: decorating the tree, hanging our stockings, making gingerbread houses, and even being visited by our Elf on the Shelf, Sprout.
Before we knew it four weeks had passed and it was time to return to NYC. Each time we leave home for treatments it seems to only get harder instead of easier. This time was especially hard with it being the holiday season and knowing we wouldn’t be bringing Kep up with us. It is so difficult to explain to a 3-year-old why he can’t see his little brother, and to see the tears and disappointment in his eyes when he realizes he can’t play with his best friend for the next two weeks. Time is such an abstract concept at this age that even one day can feel like a lifetime to Persy, so two weeks really feels like much longer.
Despite how hard it is to be away, we are so grateful to report that the cycle 4 treatments have gone very smoothly. Persy had virtually no pain during the first two immunotherapy infusions and didn’t require any rescue pain meds after any of the infusions for this cycle. This is a huge improvement compared to all of the previous HITS cycles. Although he is dealing with another onset of diarrhea, P has actually felt really great this trip and we have been able to sneak in a little fun in the city.
In addition to how well our boy has been doing, we are beyond grateful that his treatment schedule will allow us to spend Christmas at home again this year. We do not take this for granted, as we know so many families will not be so fortunate. Our hearts and prayers are with these families and their precious, warrior babies as they prepare to spend the holidays in the hospital. We ask that you join us in lifting up these families in prayer this holiday season, along with every child battling this horrible disease. May God heal them, bring them peace and comfort, and grant them all of the wonders of being a child during this most special time of year. And may we all keep in the forefront of our minds the true meaning of Christmas and God’s limitless love for us all.🎄
For God so loved the world, that He gave his only begotten Son, that whoever believes in Him shall not perish, but have eternal life.