Atypical Teratoid Rhabdoid Tumor: Jaxson’s Story

When Jaxson was 2, his mother, Diana, described him as joyful. “He is a happy, fun, very active and extremely strong little boy,” Diana said at the time. Jaxson was named a 2016 Parkway Run & Walk Ambassador while he was still undergoing treatment for atypical teratoid rhabdoid tumor (ATRT), a rare and aggressive form of malignant brain cancer found most often in young children.

Now, three years later, Jaxson is back as an Ambassador for the 2019 Parkway Run, and his personality has grown with him. “He never stops moving!” Diana says with a laugh.

Admitted in 13 Minutes

At 1 year old, Jaxson started to drool excessively at night. He would wake up with his PJs soaked. Diana and her husband, Nicholas, were concerned. Visits to emergency departments near the family’s home in New Jersey were inconclusive.

Then in June 2015, his bottom lip started twitching. Diana took a video of it, and she and Nicholas brought him to the Emergency Department at Children’s Hospital of Philadelphia (CHOP).

“He was admitted in 13 minutes,” says Diana. A CAT scan revealed a cancerous mass in his brain. Two days later, neurosurgeon Philip “Jay” B. Storm, MD, removed the tumor completely.

With a sample of Jaxson’s tumor, pathologists at CHOP were able to make the ATRT diagnosis. That information established Jaxson’s treatment plan. It was tough: six rounds of inpatient chemotherapy, 30 days of focal proton radiation, and 12 rounds of monthly maintenance chemotherapy, which concluded at the end of 2016. Jaxson 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!”

Still, the ordeal made the family see what others might take for granted — like blowing out candles on a birthday cake — as breakthrough moments. After he was diagnosed, they didn’t know if Jaxson would celebrate his second birthday. By the time that day came around, “We got to celebrate his second birthday with no evidence of disease,” says Diana.

Three Years Later

These days, the interval between Jaxson’s checkups at CHOP has grown to six months. “That’s good and bad for me,” says Diana. “There’s always anxiety.”

Five-year-old Jaxson enjoys playing video games — in particular, “Plants vs. Zombies” — and reading books. He loves the family’s pool, courtesy of the Make-A-Wish Foundation, and spending time at the beach. He’s looking forward to starting kindergarten. “It was hard at first for him to adjust to being around other kids,” explains Diana. “He’s spent so much time around adults.”

His two older brothers, Joey and Dominick, feel very protective of him, and the lingering effects of treatment mean he still needs sessions with physical, occupational and speech therapists. “He has some hearing loss, but they can’t get an accurate hearing test because he’s so young,” says Diana. “He seems to hear some things he shouldn’t hear, like birds chirping.”

Presented by Chapman Auto StoresThe fact that three years have passed since he was a 2016 Ambassador amazes his mom. “It’s surreal,” she says. “I can’t believe we did it, and I can’t believe where we’re at now.” One thing remains constant: the family’s determination to raise funds for the pediatric neuro-oncologists at CHOP who are not just caring for children with ATRT every day, but studying new ways to treat the disease.