Ruby Burgess is a lot like a typical almost-two-year-old. Put her down in the house, and she can get around on her own just fine.
Every once in a while, though, she wants to know where her parents — Johnathon and Stephanie — are.
That’s because, while she’s perfectly mobile, Ruby has been watching the world grow dimmer.
Ruby has Type 1 neurofibromatosis, a genetic disorder that causes tumors to grow on her nerve endings. In her case, her optic nerve, a key part of the organ that forms the eye.
She’s not alone in the family. Her mother has the disorder, and so does her sister, Amelia. While Stephanie’s neurofibromatosis didn’t manifest the same way as her girls, she knew she had it and wanted to make sure she didn’t pass it on to her daughters. She had them tested pre-emptively, a move that proved prescient. Both girls had gliomas — brain tumors — that had started forming.
“When we found out they (had the disorder), I had an MRI scheduled for Amelia because I knew it could cause vision and hearing issues,” Stephanie said.
Ruby was too young for the MRI at the time, but hers followed as soon as it could.
Now, Ruby and Amelia are both in courses of chemotherapy to fight back the tumors. While the gliomas they have are similar, they’re placed in different areas of their head.
“Ruby is more at risk for vision loss, and Amelia is more at risk for brain trauma from swelling,” Johnathon said. “Since (Amelia) started chemo, the minor vision problem she had has been corrected, but after chemo she will still have to be monitored and go get checked up on after three months to check for regrowth.”
In Ruby’s case, the pressure on her eye has taken her vision. The doctor has said he believes it is permanent, but nothing is certain right now. The family is waiting to find out more.
“She can get around the house,” Johnathon said. “We don’t move things because she knows where it is at.”
The family won’t deny that having a three-year-old and a one-year-old in chemotherapy is tough, but in a lot of ways they already understand the protocols for caring for immunocompromised children.
“Honestly, I was upset about it, but it was like, ‘OK, we will deal with it.’ They were both born premature, so it was just something we learned to deal with,” Stephanie said.
Both of the parents are firefighters with the Fountain Hill Fire Department, and Johnathon is the White Township constable and works for the Ashley County Sheriff’s Department. Stephanie has also worked as a dispatcher off-and-on through the years, and just finished Emergency Medical Technician school.
In some ways, Johnathon said, having been exposed to those worlds helped them prepare.
“I have 10 years in the military, five years in law enforcement,” he said. “We deal with the craziest of the crazy all the time, so I look at like, ‘It could be worse.’”
Still, when it’s your children, it’s tough.
“When we found out Amelia was actually going to have to go do chemo, that was the worst news, and then, when it turned out it was with an optical nerve tumor, I was severely upset,” he said. “The only time I’ve been to the doctor was with broken bones. I never had a health issue once, and this starts happening to my kids.”
But when it’s your children, it also gives you steel in your belly. The routine — dictated by the calendar on the kitchen wall — is key.
On Wednesdays and Fridays, the girls have physical therapy. On Mondays, they see their doctors in Little Rock.
On chemotherapy days, Amelia is a rock star, Stephanie said.
“She knows when we are going to go,” she said. “She doesn’t really cry. She is upset about it because she knows what’s coming, but once it’s over with, it is done. They say she is the best patient.”
Ruby, being younger, is less keen to cooperate. She’s given a medicine to calm down and swaddled, and her mother holds her the entire time.
In the spaces between calendar scheduling, life is almost normal, though — at least as normal as life in the time of COVID-19 can be. Because they’re immunocompromised from the tumor treatments, the girls don’t get to see much of the world. The younger girls stay home unless they’re riding along to pick up their big sister, Brooklyn, 6, from school.
“The only time we have issues is the big chemo day,” Stephanie said. “Amelia is a little tired from it, or when her (blood cell) counts get low, but she still pushes on.”
For her part, Brooklyn plays with her sisters as much as they’ll let her. When the conversation gets crowded with children’s noise, Stephanie can send the girls to their room and she’ll still know that they’re playing — the sound of the game carries through the house. They all get treated the same.
When she needs to get out, Brooklyn goes out with her grandfather, Brian Slaughter, or spends time with her great-grandmother, Lizzette Slaughter.
But the protocols stay in place. The family is members of First Baptist Church in Fountain Hill, but they haven’t been in months to avoid exposing the girls to COVID — or anything else. Stephanie has posted a sign on their front door that warns those who are entering the house about the girls’ status. And when Johnathon gets home, the first thing he does is take off his duty vest, remove his work shirt and disinfect it before going directly to the shower.
Being watchful can take a lot from you.
“There’s a point where you’re tired all the time,” Stephanie said. “You never know what will come with the next day. If they get a fever, we have to go to the ER.”
Others who have known about the family’s situation have also reached out and helped however they can.
“It’s been a lot, and everybody who has helped, donated, bought stuff — we want to thank them, for that and for their prayers,” Stephanie said. “We appreciate it all.”
But even as tough as it is now, there’s hope on the horizon. Amelia will finish her course of chemotherapy in January. Ruby will follow in October 2021. While they’ll have to be continually monitored for a few years, after the age of seven there’s almost no risk the tumor will grow.
Until then, the family will wait and pray, and watch for the time when the calendar says Mondays are free.