A song of praise spontaneously poured forth as she lay hospitalized. A song in her heart.
“That first night, when she couldn’t really make eye contact, she started singing her worship songs in the ICU. It was in there, and she could do that,” April Stracener said of her 11-year-old daughter. With her young body attached to IVs and an array of monitoring devices, she gave her mom the sweetest of blessings. Videos of those worshipful moments streamed onto Facebook, offering hope and inspiration to friends, family—even total strangers.
It all unfolded in the course of a 12-hour day. Mayme had been telling her mom for a couple of weeks that she might need to get her eyes checked. It was fairly sudden. Her vision was blurry. Within 3 days, Mayme had an eye appointment. From the regular eye scan and vision testing, it was obvious that the added lenses were not helping her see the eye chart better. The optometrist referred her to an ophthalmologist. “He was so gentle with his words. I could tell he didn’t want to say too much,” April said. They had an appointment for the next day. About two hours later, they received a call asking if they could come “right now,” instead of the next day. What had begun with a normal 10:30 morning appointment had evolved into a 3:30 urgent eye appointment. From there they were sent to the ER for a more detailed scan. By 10 p.m. that night, they were given the MRI results: Mayme had a brain tumor.
With less than an hour to pack, to explain their need to go to the hospital, and to make arrangements for the other four siblings, the Straceners drove to Cincinnati Children’s Hospital that night, arriving at 4:30 a.m., August 1. The tumor was creating pressure on the optic nerve and was intertwined with other vessels. Waiting was not an option.
A whirlwind of tests, bloodwork and scans gave doctors the intel needed for her 8.5-hour brain surgery, August 3. Mayme softly interjected, “He had to stop because it started bleeding.”
Mayme had a motor sensory struggle after her initial surgery; it was hard for her body to wake up. She couldn’t really talk at first. She had trouble with recall. Nonetheless, the one thing she could do was sing! The surgeons were able to remove 50 percent of the tumor. “He could tell by looking at it (the tumor) that it was not typical; it was very abnormal. So, there were no classic symptoms, no classic structure. It was layered, very vascular at the bottom. They did not know right away what they were dealing with; they just knew it was rare,” April said.
In the middle of Mayme’s surgery, her dad Derrick tested positive for strep. So, he had to leave the hospital and quarantine in a hotel room. He needed to be on antibiotics 24 hours before he could re-enter Cincinnati Children’s Hospital—a torturous time to be kept at bay.
April was the only person allowed to be in ICU with Mayme post-surgery, although her parents were there. “They really didn’t prep us very well for how things would be after surgery. It was a shock. She had an internal drain that was coming out of her head, and it was draining cerebral spinal fluid,” April said.
Mayme hated it. She couldn’t move. It had to be leveled, clamped, unclamped. Then she couldn’t move again. “It was rough,” April said. She endured the drain for two and a half weeks. The first 3 to 4 days, it was a struggle to simply get up and sit in a chair. Mayme remembers pieces of those days.
The tumor was positioned next to the pituitary gland. With the pituitary being damaged and the long-term surgery, Mayme was a candidate for diabetes insipidus, a dumping of body fluids. She is now taking medication to offset the electrolyte storm and damage to the pituitary, 11 pills daily. Although, Mayme’s diagnosis has been a piecing together of information and collaboration between CCH and St. Jude Children’s Hospital, it appears to be DLGNT—a diffuse leptomeningeal glioneuronal tumor.
When the Straceners spoke with the oncologist about their concerns, based on this diagnosis, he was quick to respond. “I don’t want to talk statistics. Mayme is not a statistic. She is her own person, and she’s going to fight this her own way. Her body is going to do things; her mind is strong. She is physically strong, and we don’t want to talk statistics. We are just going to do it,” April said, replaying the doctor’s response.
Mayme has a team—an endocrinologist, neurologist, oncologist and neuro-ophthalmologist.
She is on chemotherapy now, in pill form, which allows her to do treatment at home. It’s targeted treatment, three pills in the morning and five each night. As her mom said, “Mayme is very Type A. She has her pill taking down to a science.”
Additionally, OT and PT were needed to help her body reroute, remap how to do the simplest of tasks, like walking upstairs to her room.
So, what has been the hardest part? “Just hearing. . . just going through this,” Mayme said. Just going to bed was a little scary when they returned home. That’s a boatload of ‘justs.’
“It really puts things in perspective—puts relationships, our relationship with the Lord, eternity in perspective. You are forced to look at all these things and think about all these things, things you don’t sit around and dwell on just living life. The other thing that it’s done is make us realize we are powerless in this to an extent, so it has caused us to lean into Jesus and just say ‘we’re out of control here; this feels very chaotic,’ but there’s also peace that surpasses all understanding . . . When I get upset and cry, Mayme says: ‘You don’t need to worry, Mom. God’s got this.’ Then I tell her I need to hear that every day,” April said.
The Stracener’s lives have been flipped upside down. Once a fully home-schooled family, now three are enrolled in school. “It’s been very challenging. Things like this are hard. It takes a toll on your patience, your faith, your emotions, your marriage. It’s all hard. It’s a constant battle just to keep perspective,” April said. Yet, she acknowledged that on the worst of days, one of the kids will say or do something to remind her that they are OK. “The biggest shift has been in learning to live day-to-day and be OK with that.”
The landscape of impact is enormous not only for Mayme and her immediate family, but also her extended family.
“For us, it has caused us to have to explain some harder realities about life to our kids maybe a little earlier than we would have normally. That’s been tough to talk through. There are a lot of things we cannot explain to our kids, like why things like this happen,” April’s brother Landon Tong said.
He said it brings the family closer. “It’s a reminder that we’re not guaranteed tomorrow. It makes you live your life more through that lens. Hold each other a little closer and value each other even more and appreciate what you have.”
The hope was that Mayme’s body would begin helping with the excess fluid; however, a shunt was inserted week three.
Mayme still has a lot of hydrocephalus (fluid in the brain). The last two scans indicate some increase in that fluid, so a re-scan is upcoming to determine if there’s still swelling and fluid. If so, that will need to be addressed, April said. Doctors advise a hold pattern in activity until the fluid issue is resolved. Mayme’s goal is to start running again, and from that she can ease back into other activities. Mayme says that she has no discomfort or awareness of the tumor within the course of her normal day. Her treatment plan is approved for two years, with the goal being controlling tumor growth and thwarting metastasis.
“For the most part, she’s a healthy gal—she’s a healthy eater; she likes to work out. She kind of keeps herself on the up,” April said.
Mayme likes to be outside, to play volleyball, to run, to play the piano—to sing. She played softball and then transitioned to boys’ baseball. “She’s a heck of a pitcher, striking the boys out all the time,” April said.
The Owensboro community has rallied with abundant support for Mayme.
“I can’t identify anyone on Facebook by their profile picture anymore, because everyone in Owensboro that I know has the Mayme Strong profile picture. In all seriousness, people that I don’t even know are coming to me asking about Mayme. Their care, concern and encouragement for her outside of our extended family has just been really impressive . . . donations, acts of love and service to her family. . . things like that and their prayers have been much larger than expected,” Landon said.
At the moment, physical and financial needs are being met. “The biggest struggle right now is just that it’s tiring and it’s unnerving and the future’s still not certain, so prayers and encouragement, just continued support is a really big thing people can do, because it’s easy to be really concerned at the very beginning of something like this and then people’s lives tend to move on and we forget that this is still a very big part of their life. So (they need) continued prayers and support for the long haul,” Landon said.
Mayme is confident in her faith. “She loves Jesus. She knows that she is going to Heaven one day, and she’s strong—stronger than any other kid I’ve ever met, mentally and spiritually,” April said. Mayme has graciously made many adjustments since her surgery. “You’ll never hear Mayme complain about any of this.”
She carries a song in her heart.
