Patient Story
Jayden's Story: Astrocytoma
Patient Story Highlights
- Jayden, a 13-year-old boy, was diagnosed with a grade II diffuse astrocytoma, an inoperable brain tumor, in 2018 that also caused hydrocephalus.
- Despite undergoing three surgeries in three months, he kept his hopes up and became an entrepreneur by starting his own spice business.
- After finishing chemotherapy, Jayden continues to visit the hospital for routine checkups and scans every few months, inspiring others like him during Childhood Cancer Month.
Jayden isn’t like most teenagers. At 13 years old, he has already started a business and fought a brain tumor.
“His level of strength is just amazing,” says his mom, Lorisha.
It started in the fall of 2018 when what mom thought was a stomach ulcer acting up, turned into something much worse.
“He started having a headache, throwing up and started getting worse each day,” recalls Lorisha. Then a few days later Jayden thought he was feeling better and asked to go to school. Shortly after Lorisha dropped him off at school, Jayden’s teacher called and said he needed to be picked up.
“He didn’t look good. He could barely walk,” mom said. They rushed to Johns Hopkins All Children’s Hospital’s Emergency Center in St. Petersburg, Florida, looking for answers. Staff admitted him right away, started running tests and performed a CAT scan and an MRI. A few hours later, they had an answer that shook their world.
“I remember like it was yesterday,” Lorisha says. “I just saw her face and I knew something was wrong. She said the results came back and there’s a mass. … There’s a mass on his brain.”
Eventually, doctors diagnosed Jayden with a grade II diffuse astrocytoma. It was a type of inoperable brain tumor that was also causing hydrocephalus, which required emergency surgery to place a shunt to drain fluid building up in his brain. His medical team, including Stacie Stapleton, division chief of oncology and director of pediatric neuro-oncology at Johns Hopkins All Children’s Hospital, also ordered 70 weeks of outpatient and oral chemotherapy to reduce the tumor cells.
The family finally had answers, but unfortunately, they weren’t out of the woods yet.
A few weeks later Jayden’s headaches returned and the team recommended surgery for a new shunt. Stapleton says it’s not uncommon to have more than one surgery since shunts may have to be revised. Unfortunately, that’s exactly what happened. In January 2019, Jayden was having trouble again, but this time his team placed a new programmable shunt in with multiple controls to better help drain the fluid.
“I didn’t know if my child was going to make it because he kept having surgeries and just seeing the MRI, it was traumatic for me,” says Lorisha, holding back tears. “That was the thing that broke me. Like, here we are, three surgeries in three months, and it took me into a depression.”
Thankfully, Lorisha and Jayden say their medical team walked them through everything.
“They are such a nice family and always asked good questions,” Stapleton recalls. “As with all our patients, I invite all family members to sessions to learn more about the diagnosis and treatment plan. The more people that hear it, the better because then they can help each other. I take as much time as possible, and slowly and thoroughly explain the diagnosis, prognosis, the recommended treatment and point out alternatives, and I want to make sure the parents and patient get all of their questions answered.”
While the family had some answers, the future still seemed a bit uncertain for Jayden, although mom wanted him to look ahead. That’s when Jayden decided he wanted to be an entrepreneur.
“Me and my mom like to cook and we like trying different seasonings and flavors, so I told my mom about two years ago I wanted to start my own business,” Jayden says. “She told me to write a paper about what being an entrepreneur was all about and had me brainstorm ideas, and I came up with the idea on spices.”
“When he first started, it was fear for me as a mom, thinking we can’t do this,” Lorisha says. “Then at the beginning of this year, I told myself I had to make this happen for him. I didn’t want him to have a dream and not do it, and I didn’t want his medical condition to hinder him.”
Pretty soon, Jayden and his mom had a business plan and a website up and running. Jayden even started selling his products at local farmers’ markets.
The spice business gave Jayden the motivation to keep going. He has impressed not only his own family, but his medical team too.
“He’s a strong teenager, and is doing very well and has a good prognosis … and I’m excited about his business,” Stapleton says.
Jayden finished chemotherapy and now comes to the hospital for routine checkups and scans every couple of months. Best of all, he’s inspiring others just like him this childhood cancer month.
“Don’t panic and know that everything will go according to plan,” Jayden says. “Keep smiling, and don’t look at yourself in a different way just because you have a tumor or brain cancer. Love yourself and stay happy and positive.”