by Juraj Koska

Merry Christmas! On Wednesday, December 13th, after three days at home, Thomas checked back into Phoenix Children’s hospital. The next morning, at about 9:30 am, the precious bag (valued the same as a nice house in a decent Valley area) with CAR T-cells arrived and began defrosting in a special bath. At 9:55 am, Father Arthur, a priest who Thomas knew from working on his Eagle Scout project, arrived to perform a special blessing on Thomas and the cells. The hospital room was pretty crowded for the infusion, including Thomas’ parents, Fr. Arthur, and a group of 8 providers (doctors, fellows, PA, NPs, RNs) watching the cells coming in. The whole “party” took about 5 minutes. Once it was done, Thomas took a little nap helped by some medication and then resumed his typical hospital life with some reading and watching TV. The anticipated fever, indicating that the cells found their leukemia targets started in the evening. The first night, the temperature was in the 102-103 range, adding some nausea on Friday morning. Unlike the late August/early September “toaster 105”, this fever somehow responded to Tylenol, lasted for 2 days, and never went over 104 F (40°C). By Sunday, Thomas had no fever, and his eating was almost normal. On Tuesday morning, Dennis Gardeck and Antonio Hamilton from the Arizona Cardinals stopped to say hello to Thomas, followed by his doctors who were somewhat “surprised” by his relatively short-lasting fever. The discharge plan was discussed and Christmas at home looked possible. In the early afternoon, Thomas’ cross-country and track pals from middle and high school made a surprise visit. Then, the CAR Ts turned the heaters back on signaling that there were still some leukemia cells to be torched. For the next three days, Thomas was toasting again at 104-105, now with very little response to Tylenol. One night, his blood pressure dropped a little, sparking some alarm. Fortunately, his runner’s heart, with one dose of a vasoconstricting drug, was able to overcome the challenge. The nausea was also heavier than during the first wave. This time the doctors sounded “happier” about the therapy. Because of a near zero food intake, they ordered a TPN (total parenteral nutrition) supplying all necessary nutrients directly into his blood.

Finally, on Friday morning Thomas sweated it all out and had no fever for the entire day. His appetite was back on as well and he was able to add some natural nutrients. Nevertheless, the original discharge plan had been altered with a strong possibility of spending Christmas in the hospital. With the help of our Phoenix friends, we added some Christmas lights to his room and Children’s Life provided a miniature Christmas tree. The family started making plans on how to bring the Christmas festivities to Thomas. On Saturday, we picked up some Christmas presents at the hospital Toy drive for Thomas and his brother and sister. During Saturday rounds, the nurse practitioner uttered a short remark that the “new” discharge plan may be reconsidered again. At last, Christmas Day at home sounded possible. On Sunday morning, Thomas called that he is going home once he gets a bag of platelets. It was the best Christmas gift for the whole family.

We were able to have our traditional Slovak Christmas Eve dinner together, with singing the usual carol, Nativity story reading, prayer and blessing, “oplatky” (thin wafers) with honey, sauerkraut soup with mushrooms, fried fish with potato salad, and Christmas cookies. We watched “It’s a Wonderful Life” and everyone but Thomas went to the midnight Mass. Thomas was able to watch it from home. The next morning, Fr. Arthur came to our house and celebrated a private Christmas Day Mass for the family. It was the first in-person Mass for Thomas since mid-August. Fr. Arthur stayed for gift unwrapping and Christmas tamales lunch. For dinner, we cooked roasted duck with braised red cabbage and dumpling, and watched the National Lampoons Christmas Vacation. The next morning, Thomas even went on a short hike with his friend TJ. In the evening, we did our annual Moon Valley Christmas lights drive and then watched “Christmas with the Kranks”.

During the next two weeks, Thomas will have frequent outpatient appointments every 3-4 days to check his blood counts and possibly receive more blood and platelet transfusions. He will have appointments with hearing, heart and lung specialists and a bone marrow biopsy in the week of January 9th . The goal is that all leukemia cells were eliminated, and Thomas can proceed into the bone marrow transplant
protocol.

We would like to express our deepest gratitude for all the support we have received and wish everyone a peaceful and prosperous new year.