Myelodysplastic Syndrome
Visits to the doctor are certainly not an event most children look forward to, but for Payton Ray, a routine doctor’s checkup turned out to be a potentially life-saving moment. Payton’s mother, Joy, took him in for a routine appointment with his pediatrician to check his thyroid levels. “He frequently had issues with anemia with his iron levels going up and down,” Joy said. “It wasn’t uncommon for his blood levels to be down, but they typically would go back up. This time, they weren’t.” Not knowing what exactly was wrong, Payton’s pediatrician sent him to Children’s South Pediatric Outpatient Center for an ultrasound. Around the same time, Payton began complaining about pain under his arm. The ultrasound revealed his liver and spleen were enlarged. Payton was soon diagnosed with myelodysplastic syndrome (MDS), which meant his body was not making enough healthy blood cells. “The hematologist recommended we start doing transfusions to try to keep his red blood cell count up, so that’s what we started,” Joy said. The transfusions worked for a couple of years, but eventually, the transfusions were no longer keeping his levels up. Doctors also were able to further pinpoint Payton’s MDS – refractory cytopenia with unilineage dysplasia. “The hematologist was afraid that it was going to eventually transform into leukemia, so at that point we were recommended to talk with Dr. Joseph Chewning at Children’s of Alabama about a bone marrow transplant,” Joy said. “After talking with him, they started looking for bone marrow donors.” After a few failed donor matches—and a rollercoaster of emotion for Payton’s family—an ideal donor was found. “Thankfully, the donor agreed to do it and just a few weeks later we were at the hospital with Payton waiting for the transplant,” Joy said. Then 13-year-old Payton underwent a round of chemotherapy before the transplant, which occurred in late October 2015. Doctors prepared the family for hospital stay of about six weeks. “Payton did fabulous and he was actually able to go home before Thanksgiving,” Joy said. “We were so thankful for that. He was a trooper and impressed us so much with how well he handled it all.” Payton has continued to thrive post-transplant. He is still required to take anti-rejection medications and travels back and forth from his home in Odenville, Alabama to Children’s for checkups. Every day is a step toward getting back to the activities he loves like swimming. He’s also anxious to go back to school. “He’s doing just fabulous,” Joy said. “He’s doing so much more now and can actually get out and go places. We appreciate Children’s so much. They made our journey easier and they are now like family. And, of course, we owe so much to Payton’s donor. It’s amazing to us that someone would be that kind to donate bone marrow for a complete stranger. It’s incredible and we’re so very grateful.”
