By Brandy Bourland
Kaylee Starnes, 17, of Osceola, had always been a beautiful, bubbly, outgoing, and vibrant child with a big heart. Throughout her teen years, she has enjoyed working shifts at her local job, hanging out with friends, and driving her Ford Mustang. She was a model student at Osceola High School, making good grades and putting her on target for graduating early. She was also a member of the school’s FFA chapter, played softball and volleyball, and enjoyed shop class, excelling specifically at welding. After high school, Kaylee had plans to become a veterinarian or a child psychiatrist; helping those in need, whether it be animals or children.
Then, in October of last year, everything changed.
St. Clair County Courier Editor, Brandy Bourland, sat down with Kaylee’s mother, Toni, at their home in mid-June to talk about what the family’s world has looked like since then.
Kaylee began to exhibit strange symptoms in October 2025, with numbness and tingling down the side of her leg. The teen had gone to a local chiropractor, thinking it to simply be a pinched nerve. However, a couple of days after the adjustments, the symptoms became worse and began moving to the opposite leg. The following day, Kaylee woke up with severe back pain, resulting in her mom and dad, Jon, taking her to a nearby emergency room. After conducting an x-ray, medical staff told Jon and Toni their daughter may be suffering from symptoms of Scheuermann’s disease, a developmental skeletal condition involving abnormal vertebrae growth, but it was not serious.
The next morning, Kaylee had inexplicably fallen while getting out of the shower, hitting her head and back on the sink. After helping the teen off the floor and to get dressed, Kaylee decided to take a nap, hoping some rest would help; however, a short time later, she had sudden incontinence, prompting Toni to take her daughter to Children’s Mercy Hospital in Kansas City.
After arriving at the hospital and relaying Kaylee’s recent symptoms to medical staff, Toni requested an MRI (Magnetic Resonance Imaging) test be conducted, but was met with resistance when she was told she ‘could not simply request the test’. Tests to determine if Kaylee was suffering from stroke symptoms were conducted and came back negative. The Starnes family was released from care with no answers.
The following week, Kaylee’s symptoms worsened with her having slurred speech, often dragging one of her legs when she tried to walk, and frequently falling. Once again, her parents transported her to another Children’s Mercy location, demanding an MRI and being met with the same resistance. Medical staff conducted a CT (Computed Tomography) scan, checked for stroke a second time, and then contacted a spine specialist. After evaluating Kaylee’s physical symptoms, the specialist told Jon and Toni he was unsure of what was causing Kaylee’s symptoms and that an MRI referral was needed, but it would be ‘two or three months’ before the test could be conducted. “I told him ‘no, we are not doing this, we are leaving this emergency room and going to another one, and another one after that, until we figure out what is going on’. We were finally admitted into Children’s Mercy at 7 o’clock that night and the MRI done at 11 p.m.”
With the MRI it was determined that Kaylee had a tumor on her spinal cord. Doctors told Jon and Toni that she would need to have surgery to further assess the situation, including to see if the tumor could be removed. At 5 a.m. the next morning, surgeons began the delicate surgery, which would end up lasting 12 hours. Additionally, staff did not adequately check the bite blocks inserted in her mouth (a tool commonly used during surgery), resulting in Kaylee nearly biting through her tongue during the lengthy procedure. “A plastic surgeon was called in to check to see if she would need reconstructive surgery,” Toni said. “Thankfully, she didn’t and it eventually healed.”
Kaylee spent three weeks in the intensive care unit, healing from the spinal cord surgery, and an additional 30 days on the hospital’s rehabilitation floor, being discharged and permitted to return home three days before Thanksgiving. Through the surgery, it was determined that Kaylee was suffering from a Diffuse Midline Glioma (DMG) H3 K27-altered spinal cord tumor. She had cancer.
DMG is a rare, highly aggressive, and fast-growing malignant type of cancerous brain tumor that is incurable and mostly develops in children. A glioma (brain tumor) begins in the brain or spinal cord and grows from glial cells, which are found throughout the brain and support cells within the nervous system. Gliomas spread to surrounding healthy tissue, making it harder to treat with surgery and other therapies. In most cases, DMGs develop without an underlying genetic predisposition (not inherited) and is thought to occur because of a mutation or change in the DNA of a glial cell.
The American Brain Tumor Association (ABTA) says symptoms of DMG are dependent on the tumor location, with the most common symptoms being cranial nerve abnormalities, difficulty walking, balance issues, arm and leg weakness, impaired movement, numbness, and alteration of normal bowel and bladder function. While the diagnosis of DMG can often be made with imaging (such as MRI), without the need for a surgical biopsy, tumor biopsy by a qualified neurosurgeon is recommended to obtain information of the molecular make-up of the tumor, which can assist in confirming diagnosis and guiding treatment. However, as in Kaylee’s case, complete or partial surgical removal of the tumor is often not feasible due to the shape of the tumor (no clear tumor border) and the delicate locations in which DMGs occur, impacting parts of the brain that control important body functions that are crucial for survival.
According to the ABTA, radiation therapy is the only treatment that has shown benefit in DMG, killing cancer cells and stopping them from growing, but it only works for a short time. However, there are a variety of clinical trials available for DMGs, to test potential treatments.
After Kaylee was officially diagnosed, she was put through several weeks of rigorous medical treatment with hopes of stopping the tumor’s growth and easing symptoms. While the treatment initially showed progress, raising hope, it eventually stopped working and the tumor began to rapidly grow, moving up her spine and further limiting her mobility.
With no other federally-approved treatment left to try, and doctors urging the Starnes family to turn their focus toward making Kaylee physically comfortable in the short time they said she had left, Toni began a stringent search for other avenues they could take to save their daughter’s life, including clinical trials offered worldwide. “I have spent countless hours researching and making thousands of calls, desperate to find something.”
Some of those calls led her to the Oasis Cancer Center in Tijuana, Mexico, where it was hoped treatment could at least slow the growth process, buying Kaylee additional time. The family was thrilled to find an entity to turn to, but worry began to set in when Jon and Toni realized the costs associated with the trip and medical treatment were going to total to roughly $70,000, at least. While Kaylee’s health had recently required Toni to resign from her job, Jon’s income was their single, basic means of support, which left them struggling. Therefore, the family turned to their local community for help.
After learning of the Starnes’ dilemma, the small, rural community of St. Clair County -at just under a population of 10,000- stepped up. Numerous residents began donating what they could toward Kaylee’s battle, as well as organizing large fundraisers for additional support.
Then, in May, the family was hit with a massive blow when they learned the Oasis center denied Kaylee due to the tumor having moved into her brainstem, making treatment and outcome more difficult to determine.
After more research was conducted, the family found and began communicating with Envita Medical Centers in Scottsdale, Arz. “Envita is a precision personalized medicine facility located in Arizona, due to the advanced laws allowing for many lifesaving modalities that other states are unable to,” Envita says. “We specialize in combining conventional research-based naturopathic treatments into highly individualized, data-driven care plans. Our protocols are designed using detailed genomic and molecular data to precisely target the specific condition.”
While celebrating a renewed hope for their daughter, upon discovering Envita, the Starnes family learned that the weeks-long outpatient treatment required Kaylee not be on any other clinical trials, required them to stay for months near the facility, is not covered by insurance, and that the consultation/assessment process alone would cost roughly $150,000. Again, the community stepped in and has since been trying to assist with raising additional funds to cover the massive costs associated with the trip (living expenses, and treatments) which they estimate will cost around $28,000 per week. “We will do anything to get her there, to help her,” Toni said, with an unmistakable determination in her voice. Pending test results, the family is currently awaiting the facility to accept Kaylee and Child Protection Services to allow it, which is routine protocol for a juvenile seeking the treatment. “We’re sitting and waiting. Waiting while the tumor grows.”
The Starnes have also recently had a blood test conducted, via a medical facility in Europe, that they anticipate will help dissect the tumor, determining its genetic makeup and possibly assisting in finding additional avenues for treatment.
Kaylee is also undergoing remote natural healing treatment sessions with David Chauncey Cook, founder and director of Saving Health Lifestyle Center in California, until mid-July.
She will also be going back to high school this year, attending classes online, with plans to graduate at semester.
Currently, the teen is on a regimen of prescription medications through a cancer specialist to assist with pain management and is receiving palliative care. She is confined to a wheelchair full-time, due to the aggressive disease leaving her paralyzed from her toes to her chest; however, as of mid-June, Toni reported Kaylee had also begun to feel the beginnings of paralysis in her fingers, moving up her arms.
This spring, the Make a Wish Foundation paid for an all-expense-paid trip for the Starnes family to spend several days in Orlando, Fla., at Disneyworld. After many months of focusing on Kaylee’s fight, the Starnes were looking forward to Kaylee enjoying some time away and with her and her 11-year-old brother, Koltin, all four of them spending a week in a place that is known as the “Happiest Place on Earth”. However, shortly after arriving in Orlando, Kaylee became severely ill and was admitted to a Florida hospital where it was discovered a blood clot had developed in her stomach. Kaylee’s Disney trip had been torn away from her before it even began. While the trip could not be replicated, weeks after the family returned home, the organization treated Kaylee to a shopping spree where she was allowed to purchase a new cell phone, a purse by a favorite designer, and several other items she continues to covet.
When Bourland asked how Kaylee’s mental health has been impacted by the disease, Toni paused for a moment to think about the words to explain it. Then, with tears forming in her eyes, she said Kaylee continues to be in pain, despite the medications intended to ease it. Some of the medications have also caused additional symptoms like nausea and a varying appetite.
Speaking about Kaylee’s life prior to the diagnosis, Toni recalled Kaylee’s first Mustang and how happy she was when her dad brought it home to gift her. “It was a 1999, blue Mustang. I have a video of her facing me while her dad is pulling in the driveway with it.” Tears began to well up once again in Toni’s eyes while recalling the memory. “She turned around and just started crying when she saw it. She was so happy because she had wanted a Mustang so bad.” Toni then smiled, “That car only lasted about three months before she blew it up. But she worked hard, raised her own money, and I co-signed for her to buy a blue 2005 Mustang. She raised the money, made the payments, paid her own insurance, and that car was her pride and joy; she worked for it. She loved to cruise in it. Her and her best friend, Jasmine [Bray], were always cruising.” Toni said the sound system in the car could be heard from miles away, “You could hear her coming. She loved music. There was always music in her car, in her ear pods, everywhere.” She paused, “Now, she doesn’t listen to music. Loud noises hurt her.” Tears began streaming down Toni’s face. “She doesn’t want to go anywhere anymore, and she doesn’t want anyone to look at her.”
Kaylee has tried to find new hobbies, like binge watching Bob’s Burgers or Sons of Anarchy, and plays games on her phone. “One of her favorite past times is watching Sons of Anarchy with nana and her papa, Gary. She does that daily. She says she really doesn’t even care for the show’s ridiculousness, but likes to hear her papa laugh while getting so worked up over it.”
“She also loves to shop. Uncle Dusty [Gibbs] is always slipping her money and she’ll put in a Shein order,” said Toni. “Personally, he has been my biggest supporter in all of this. Anytime I need him, he’ll drop what he’s doing.”
As far as additional physical effects, Kaylee’s limited mobility has begun making her develop sore spots on her skin. With her spinal cord being compromised and the required use of a catheter, Kaylee also has Autonomic Dysreflexia, which compromises the brain’s ability to regulate the body’s autonomic nervous system and can be a potential life-threatening medial emergency, causing a sudden, severe spike in blood pressure, warranting cardiac arrest.
Cancer has also taken a toll on the family dynamics. Things many often take for granted, such as being able to sit together at the table for dinner time, have changed. Family time has now been modified to consist of activities requiring little to no physical activity, like taking in more movie nights and less swimming together in the pool.
Since early-2026, Toni has been sleeping nightly in a recliner placed beside Kaylee’s bed, so she can be close by to keep watch and tend to her daughter’s needs throughout the night. She spends nearly all of her time -day and night- caring for Kaylee, squeezing in routine household chores, and continuing her endless research on ways to continue fighting for Kaylee’s life. “I don’t have time to take a break. I keep myself busy.”
Kaylee’s dad is often found working long hours, trying to keep financial ends met and building up for the days needed to accompany Kaylee on important medical procedures or treatments. Jon has also been trying to take extra time to do things with Koltin, like tinkering in the shop outside or planning and building special projects with him.
Meanwhile, Koltin is trying hard to help wherever he is able and prays nightly for his big sister on bended knee. He also does what he can to elicit a smile out of Kaylee. “Koltin wishes things could go back to the way they used to be,” Toni said, with a tear streaming. “I don’t want it to sound bad, but it seems like I don’t have time for him because I’m so busy with everything. He doesn’t understand. He asks, ‘mom, will you come throw the ball with me, come swim with me, come ride the bike with me’. I tell him, ‘give me just a minute’, and then -before I realize it- that minute is gone and I didn’t get to do those things with him.” She explained that Koltin, who has a big heart, also fears what will happen to his sister as the disease progresses. “I tell him it is up to God, not us, but we are going to do everything we can.”
According to the DIPG Organization, DMG cancer makes up 10-15% of all brain tumors in children, with about 150-300 new diagnoses per year in the U.S. Due to its aggressive nature and difficulty to treat, fewer than 10% of children survive two years from diagnosis, with the median survival time being less than a year (typically 9-12 months).
Time is a large factor in Kaylee’s fight to live, but her parents’ determination is strong. With a spark of fight glinting in her eyes, Toni told Bourland, “They [initially] gave her 6-12 months, and we’re at seven months right now, but they aren’t God. They don’t get to tell time. We’re going to do absolutely everything we can for her.”
Toni expressed sincere gratitude for the community’s involvement in Kaylee’s fight by helping them raise funds, with around a quarter of the initial Envita consultation cost having been raised. “I can’t say ‘thank you’ enough for what they have done. They have helped with so much, not just with donations, but also with emotional support. We don’t know what we would do without them - the love and support has been overwhelming. Yes, we still have a long way to go, but we’re getting there.”
Those interested in donating toward Kaylee’s fight can contact the Starnes family by email at tcstarnes7@gmail.com, by mail at P.O. Box 100, Osceola, Mo., 64776, or by visiting https://cash.app/$ToniStarnes07?qr=1.
Photos accompanying article: Kaylee Starnes; Starnes while under hospital care; fundraisers held in Starnes' honor (including a poker run, cornhole tournament, softball tournament, carwash, various booths). Photo Credit, T. Starnes
