St. Jude beyond what one mom could imagine for son’s brain tumor treatment

WICHITA, Kan. (KSNW) — St. Jude is beyond what one mom could have imagined for her son’s brain tumor treatment.

When Merri’s son, Josiah, was six months old, she took him to a well-baby check-up. During it, the pediatrician would notice the size of Josiah’s head was too large for the rest of his body and his age.

“The next day, we had an ultrasound done, and that doctor at that hospital wrote his cell phone number on a piece of paper and told us just to go straight to the ER at our local children’s hospital and not to stop for lunch, not to pack a bag, that he had some sort of mass on his brain, and we needed to go right away,” said Merri.

It was a Friday that Merri would learn Josiah had an astrocytoma glioma tumor that started in the back right side of his brain and then spread across his midbrain.

“On Monday, he had part of his tumor removed,” Merri said.

Josiah recovered in the ICU and then was sent to St. Jude to figure out what the next steps for him would be.

“When we arrived, I remember asking, like, ‘Who do I need to send his scans to? Who do I need to send medical records numbers?’ And they just said, ‘Don’t worry about it. We have everything we need. We’re gonna take care of it, you just need to be here, and we’re gonna get your son well,'” said Merri.

Merri says while trying to figure everything out, she was told once you’re a St. Jude patient, you’re always a St. Jude patient.

“We didn’t have to worry about paying for medicine, about paying for surgeries. Anything that he needed was gonna be covered by generous St. Jude donors, and it was beyond what we could imagine,” Merri said.

Merri says having the burden of having to pay any bills taken away was amazing. All she had to worry about was getting Josiah well.

Josiah was in treatment for just over a year. He went through 18 rounds of chemotherapy during that time.

“He had three different drugs that he received every three to four weeks, depending on how quickly his body recovered,” said Merri.

After treatment, Josiah would go for check-ups from every four months, to every five months, to every five months, and then twice a year.

Now, at the age of 14, Josiah goes for a check-up once a year.

Josiah says he feels both happy and mysterious to come back.

He feels happy because he gets to see old friends.

“One of his friends from 2009 was here getting her yearly scans, and we were able to meet up with them,” Merri said. “It was really sweet because we were comparing pictures of when they were six months and two year old’s and now they’re 14 and 16 years old.”

Coming back also has him feeling mysterious.

“I don’t know if my tumor would be growing again or something else would be growing in my head,” said Josiah.

Josiah says his favorite part about St. Jude is visiting his therapist.

“Josiah’s occupational therapist has been the same person since he was six months old,” Merri said. “She’s seen you at every age and stage, and that’s so special to be able to still come back and see these people that have meant so much and taught him how to walk, taught him how to talk. It’s been so special.”

His favorite place at St. Jude is the family commons area.

“I actually tried one of their milkshakes for the first time, and it was so yummy,” said Josiah.

Outside of visiting St. Jude, Josiah plays video games, attends school and participates in after-school activities.

“Well, I do newspaper,” Josiah said. “And C-H-E-E-R yeah! That’s the club for me!”

For Josiah, St. Jude means love.

For Merri, St. Jude means hope.

“I don’t know that we would’ve seen Josiah’s first birthday if it weren’t for St. Jude and their hard work and their research,” said Merri.

When people hear his story, Josiah wants people to know that St. Jude “is like a superhero that never sleeps.”

Josiah says if you don’t reserve a St. Jude Dream Home ticket, you’re not just missing out, the kids of St. Jude are as well.

“We need everybody to join this fight with us. It can’t just be one person, it can’t just be one city. We need everybody,” Merri said.

To reserve your ticket for the 2023 St. Jude Dream Home giveaway, click here.

KSN News and St. Jude’s mission in 2023 is to raise over $1,300,000 for the kids of St. Jude in the fight against childhood cancer.