It's Not About Us

Krystalyn Boman is a fun-loving 12-year-old who enjoys being silly. She likes to fix her hair and read. She surrounds herself with stuffed animals and has a special fondness for the Disney character Stitch. 

But beneath her playful spirit lies a generous heart. Krystalyn has helped with a new study that could make a big difference to other children, teens, and young adults around the world.

In 2019, Krystalyn learned she had a tumor in her brain: a type of low-grade glioma called ganglioglioma. The tumor grew from the size of a grape to the size of a grapefruit. Surgeons at a hospital in Alabama removed the tumor. 

In June 2024, she started to have back pain and disorientation. She found out that the tumor had returned. Even worse, now there were more tumors. Krystalyn’s mom, Krystal, wanted a second opinion. Krystalyn was referred to St. Jude Children’s Research Hospital.

At St. Jude, Krystalyn enrolled in the SJ901 clinical trial. In a clinical trial, researchers study a drug or type of treatment to see if it works safely to help with a disease. The SJ901 trial studies an oral chemotherapy drug called mirdametinib. 

Every day, Krystalyn takes the chemo drug by mouth. She has had a few side effects, such as diarrhea, rash, and peeling skin. These are common for people who take mirdametinib. But overall, she has felt great on the medicine. 

Of course, her family wants Krystalyn to get better. But she and her family see a larger picture. They know that taking part in a clinical trial might benefit other children with brain tumors. 

“It helps knowing that what we’re going through will be able to help somebody else,” Krystal says. “Somebody is coming behind us who didn’t know a brain tumor could exist for their child.”

Soon after being on the trial, Krystalyn’s brain scan was mostly clear, which meant that most of the tumors in her brain were gone. Her mom credits the medical team at St. Jude.

“They have given her a second chance at life,” Krystal says.

At St. Jude, families don’t pay for medical care. But for Kystal, the importance of St. Jude is greater than that. 

“The support here… Everybody is so nice and so genuine. And when they tell you they only want you to focus on your child getting better, that is all they want you to focus on,” Krystal says.

“I tell Krystalyn all the time that this journey is not about us.”

What has sustained Krystalyn through this time? 

“My support system, keeping my faith, keeping confident throughout this. The biggest thing is keeping faith,” Krystalyn says. She also knows that her experiences may help doctors develop better treatments for children everywhere.