By the time he was 10 years old, Xisto had earned a Black Belt in taekwando. He was traveling to, and winning, competitions.
Yet he was tired enough to fall asleep at unusual times. Then the petechiae developed, all over his feet and hips. Multiple doctors assumed this was a rash, and since he didn’t show signs of illness, he continued with his busy life.
On the way to another competition, he was snacking on sunflower seeds. Suddenly, his gums began to bleed. Even now he remembers the unusual amount of blood, which his dad suspected was from bad tooth hygiene. They drove on to the competition, and he participated as usual.
A few days later, the “rash” spread to his entire mouth area. The doctor ordered blood work, and stunned his mom when they discovered he had no white cells, no platelets, and few red blood cells. The instructions? Take him to the emergency department now!
At the hospital, Xisto overheard, “We can treat leukemia, but if it’s something else, we don’t know what we can do.” He suddenly realized how severe this un-diagnosed condition could be. He was admitted, then received the diagnosis of aplastic anemia on his mother’s birthday.
All his family was tested as they considered a bone marrow transplant. No one in his family was a match. His cousins jumped into action, holding donor drives in their town to help find a match for him.
Since time was against him, the specialists decided to try H-ATG treatment. He was assigned to pediatric specialty care, with wonderful nurses and caring doctors. He did get tired of the residents, he said, because they kept returning to him only because he had a rare disease. To keep him entertained, a doctor suggested that he memorize his long MRN number, then continued to give him medical vocabulary to learn.
One of the difficulties Xisto faced was repeated bone marrow biopsies. Because he still had so much cartilage in his hips, the doctors had trouble finding bone marrow, only extracting cartilage. His doctor called him, “Shark,” since he had more cartilage, so Xisto learned all he could about sharks, so the health care team quizzed him about these creatures regularly.
Xisto had challenging side effects from treatment. He suffered so much from gingival hyperplasia that it became difficult to eat. He had weight gain from the steroids and extra hair growth as well. His mom and dad took turns staying with him, keeping him diverted as they could. One evening, just before a treatment, he and his dad “snuck out” of the building just for a walk around campus in the dark. They returned to his room just before treatment commenced, just in time!
He did not attend about a year of school, but he participated in an online school, one of the first of its kind. When he was allowed to visit his school, the staff and the students all wore paper bow ties to greet him, his favorite accessory!
When Xisto was released after treatment, his family had to bring him back daily, then less frequently as he improved, through 2018. He suffered from few additional complications. He returned to school, and to his Dojo, and to his regular life. The only unusual routine was regular blood work. He studied nursing at the Career Enrichment Center of his high school, earning his License for Practical Nursing, LPN, as he graduated.
At college now, Xisto is studying for his Registered Nursing degree and license. He is teaching taekwando at his school as a Third-Degree Black Belt. He also will be working as a nurse in pediatric home health --- two extra jobs while he studies!
Xisto has kind words for pediatric patients: “The people around you will get you through it.” He also knows that his parents worked to appear calm when they were worried, which he credits with helping him get through the difficult parts of treatment. His extended family helped feed their animals and made food for the family all the time that he was in treatment. They also helped by taking his siblings to their extracurricular activities.
He appreciates all that everyone contributed, through actions and prayers, to help him survive, and now thrive, in health care as a nurse. Xisto is giving back to the community as he goes forward into the next phase of his amazing life.