Atypical Teratoid Rhabdoid Tumor: Jaxson’s Story
The word that best describes Jaxson, 2, is joyful. “He is a happy, fun, very active and extremely strong little boy,” says his mother, Diana. A brain tumor diagnosis hasn’t changed any of that.
When he was 1, Jaxson started to drool excessively at night. He would wake up with his PJs soaked. Diana and her husband, Nicholas, were concerned. A few days and doctor visits later, Jaxson was admitted to a hospital in New Jersey, but doctors weren’t able to determine what, if anything, was the problem. One doctor did, however, mention the possibility that Jaxson was having seizures, a comment that lingered in his parents’ thoughts. On June 22, 2015, his bottom lip started twitching. Diana took a video of it, and she and Nicholas brought him to the Emergency Department at The Children’s Hospital of Philadelphia.
“He was admitted in 13 minutes,” says Diana. A CAT scan revealed a cancerous mass in his brain. Two days later, he had surgery, and the tumor was fully removed.
Treatment was tough: six rounds of inpatient chemotherapy, 30 days of radiation, and 12 rounds of monthly maintenance chemotherapy, which should conclude by the end of 2016. Yet Jaxson has sailed through it. “He’s so comfortable at CHOP,” his mom says. “It’s not stressful. It’s like coming to see family.” Jaxson’s father laughs and adds, “Sometimes he doesn’t want to leave!”
Jaxson loves goofing around with his big brothers and watching them play baseball. After their games, he runs around the field with them. These days he can’t be in the sun for very long, which has curtailed his beloved outside play time, but he has plenty of company to keep him occupied: “His brothers, grandparents, cousins, aunts and uncles adore him and love spending time with him,” says Diana. The diagnosis and treatment sent the family into a whirlwind, but also brought them closer together.
The members of Team Jaxson are excited for the Parkway Run & Walk on Sept. 25, and little Jaxson is serving a big role as one of the event’s Patient Ambassadors. All funds raised benefit cancer research and care at The Children’s Hospital of Philadelphia. Team Jaxson’s goal is to raise a minimum of $10,000. As Diana puts it, “We want the best research for the children at CHOP. No one fights alone.”