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Meet Kinlee Karter Owens
Before there was a foundation, before there was a diagnosis, and before we ever knew the letters DIPG would become part of our lives, there was Kinlee.
Kinlee, known as Stink to everyone, was our youngest child. A little sister, a grandchild, niece, cousin, friend, and a little girl with a personality far bigger than anyone could have imagined.
She was funny, sassy, creative, stubborn, fiercely loving, and completely unforgettable. She had a way of making people laugh, keeping everyone on their toes, and leaving an impression wherever she went.
On December 18, 2024, at just nine years old, Kinlee was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).
But DIPG is not where Kinlee's story begins.
To understand why we fight so fiercely today, you first have to know the little girl we're fighting for.
Before DIPG, There Was Stink
On April 7, 2015, Stink entered the world and completed our family in a way we never even knew was possible. She was the piece we didn't know was missing, the final little addition to our family, and the baby who made us whole.
As the youngest of the crew, Kinlee quickly learned how to hold her own. And it didn't take long for us to realize that this little girl was going to have a personality all her own.
If you knew Kinlee, you knew there was never a dull moment.
She had a personality far bigger than her little body and absolutely no problem letting you know what she thought. She could have an entire room laughing without even trying, and sometimes the things that came out of her mouth left us wondering where on earth she got them.
She had her own way of seeing the world, her own opinions about how things should be done, and a remarkable ability to make everyone around her remember the smallest moments.
She wasn't always easy to reason with. She was stubborn, independent, and determined to do things her way. But she was also incredibly loving, and beneath all that sass was a little girl with the biggest heart.
Kinlee also had a special talent for knowing exactly when to say something. She loved reminding us that she was the planned baby of the family, but she made sure to save that particular conversation for when her siblings were around to hear it. It wasn't enough for her to know she was planned. She needed them to know it, too! Questions like, " Mom, you and Dad WANTED to have me, right? I wasn't an accident like the other kids?" And you can bet she enjoyed every second of their reactions.
Kinlee was an old soul in so many ways, especially when it came to music. She loved hanging out in Mom and Dad's bedroom, watching YouTube videos of Michael Jackson and Whitney Houston,dancing and singing along. It was something we did with her from the time she was a baby. Bruno Mars and Cardi B were also among her favorites. Her taste in music didn't necessarily match her age, but that was Kinlee. She liked what she liked, and she didn't need anyone else's approval.
She loved watching television, reading books, and spending time doing hair and makeup. Her favorite books included Dog Man and The Baby-Sitters Club, but she also loved reading her Bible. She enjoyed art, Disney, Stitch, shoes, and anything that allowed her to be creative. Holidays were her favorite, and she believed in sharing birthdays which meant you sharing your birthday with her, but when April 7 rolled around, sharing was off the table.
As much as she loved getting dressed up and playing with makeup, at home, Kinlee preferred to be comfortable. She was perfectly content relaxing in her pajamas, watching television, or reading a book. And one of her favorite little habits was sneaking into Mom and Dad's bed after Dad left for work. As far as she was concerned, our bed was the best place in the house.
Kinlee also knew exactly what she wanted when it came to food.
She loved Mexican food, especially the chips and queso from Casa Olé. Tacos, spaghetti, and shepherd pie were her most requested. She had a sweet tooth like no other and was constantly requesting Skittles, Rolos, or gummies. She loved ice cream, but it couldn't be just any kind. It had to be Blue Bell Homemade Vanilla. And while she certainly loved her sweets, she was just as happy with a bowl of grapes or some fresh watermelon.
Sundays after church were something Kinlee looked forward to. She loved going to church, especially what she called “big church,” and afterward came one of her favorite routines: shopping.
Ross, TJ Maxx, and Five Below were regular stops. She loved browsing the aisles, finding little treasures, and convincing us that whatever she'd discovered was something she absolutely needed. It was our Sunday routine, and she loved every bit of it.
And then there were her friends.
Kinlee had a core group of friends who had been together since the beginning of school: Bella, Mia, Londyn, Amari, Joshua, Fred, Caliyah, Jace, and Ava.
These weren't just children she saw at school. They were the friends she was growing up with, making memories with, and sharing all the little adventures that come with childhood. They were as thick as thieves, and stuck together from the time they started Pre K 3.
The girls especially loved their sleepovers, which they often planned entirely on their own before bothering to include the parents in the conversation. There were movie dates, birthday dinners, skating trips, gossip, laughter, and plenty of discussions that apparently required absolutely no adult involvement.
Kinlee loved being with her friends, and socializing was one of her greatest talents.
In fact, it played a pretty significant role in her athletic career.
Her first experience with T-ball lasted exactly one game before Dad convinced her to retire in exchange for a Happy Meal. Apparently, that was a deal she couldn't refuse!
She went on to play a season of basketball, and in the spring of 2024, she discovered a sport she genuinely loved: soccer. She enjoyed it so much that she was already looking forward to trying volleyball next.
But whether she was playing herself or attending Karsen and Kylynn's games, Kinlee was always happiest when she was surrounded by people. She loved running around with her friends, visiting with everyone, and making herself right at home among her siblings' teammates.
And those teammates loved her right back. To many of them, Kinlee wasn't just Karsen and Kylynn's little sister. She was their little sister, too.
Family was everything to Kinlee. She loved being the baby of the family, and she had a special place in the lives of the people who loved her.
But aside from Mom and Dad, there was one person who held an especially important place in her heart: her MiMi.
Because we left for work so early, Kinlee spent her mornings with MiMi from the time she was little. Most mornings involved pajamas, spending time together, and enjoying their own special routine.
When Kinlee was younger, she became upset that all the big kids got to go to school while she had to stay behind. So MiMi came up with a solution.
MiMi's Pajama School.
It was their very own little school, created especially for Kinlee, where she could stay in her pajamas and still feel like she was doing what the big kids were doing.
Even after Kinlee started school, her love for MiMi's house never changed. She looked forward to getting out of school, packing a bag, and heading over to spend time with her.
Kinlee was a little girl who loved deeply, laughed often, and lived life with a personality that was entirely her own.
She loved her music, her books, her snacks, her shopping trips, her family, and her friends. She loved being comfortable at home just as much as she loved getting dressed up and going somewhere. She could make you laugh, test your patience, melt your heart, and leave you wondering what in the world she might say next.
She was stubborn. She was hilarious. She was loving. She was wonderfully, unapologetically herself.
And that was the magic of Stink.
When Everything Began to Change
In August 2024, Kinlee started fourth grade at Brookhollow Elementary. She was nine years old, excited to be back with her friends, and beginning another school year just like any other child.
There were no obvious signs that anything was wrong. She was still our same funny, sassy, opinionated little girl, going to school, spending time with her friends, and enjoying the routines of everyday life.
As the fall went on, we began noticing little things. Nothing that immediately made us think something was seriously wrong. Just small changes that, individually, seemed to have reasonable explanations.
She seemed more tired than usual and had started taking naps after school. Occasionally, she would stumble or seem a little clumsier than normal. Her mood seemed different at times, too. At nine years old, we wondered whether some of those changes could simply be hormones or part of growing up.
Just before Thanksgiving, Kinlee was sent home from school on a Thursday after an episode of vomiting. The following day, her teacher called to check on her and mentioned that she had also become sick. Several children were out with what appeared to be the same virus, so we had no reason to believe Kinlee's illness was anything unusual.
Kinlee hadn't experienced any additional episodes of vomiting, and by Saturday, she was feeling well enough to attend a sleepover with her friends that she had been looking forward to for quite some time.
When I picked her up Sunday morning before church, she asked me if I could make her an eye appointment. She explained that while she and her friends were watching movies, she had noticed the television looked blurry.
Kinlee already wore glasses to help her see the board at school, so naturally, we assumed her prescription had changed and she simply needed a stronger pair.
But before we could get her in for that appointment, other changes began to appear.
As December arrived, we noticed that one of Kinlee's eyes wasn't closing completely when she blinked. There was a visible difference in the appearance of her eyes, and we eventually began noticing some facial drooping.
Because she had recently been sick, we wondered whether she might have developed Bell's palsy following the virus. It seemed like a possible explanation for the changes in her face.
Individually, these symptoms might not have seemed terrifying. But together, they were beginning to tell a story we didn't yet understand.
December 15, 2024.
I received a phone call from my mom. She told me Kinlee seemed more clumsy than usual and that the difference in her eyes had become more noticeable.
Something wasn't right.
We took her to our local emergency room that evening, hoping someone could tell us what was happening to our little girl.
The doctor barely examined Kinlee before sending her for a CT scan.
When I saw the CT images come up on the screen, something immediately caught my attention.
I was a nurse. I wasn't a radiologist, and I couldn't tell you exactly what I was seeing. But I knew something about those images didn't look right.
My gut told me something was wrong. So I quickly took a picture of the screen.
At the time, I had no idea just how significant that photograph would become.
And then we waited.
Hours passed without anyone returning to explain the results. Eventually, I stopped a nurse who was walking by and asked about Kinlee's scan. She told me everything was clear and that they were just waiting on our discharge paperwork.
That was it.
We never saw the doctor again after his initial examination.
I wanted desperately to believe that everything was fine. That there was some simple explanation for the changes we were seeing in our daughter.
But I couldn't shake what I had seen on that screen.
And I couldn't ignore what I was seeing in Kinlee.
Her face was changing. Her eyes were different. She was stumbling. Something was happening to our little girl, and being told her scan was clear didn't explain any of it.
Enough was enough.
The very next morning, I took Kinlee to her pediatrician. He examined her, listened to our concerns, and gave us a STAT referral to Texas Children's Hospital.
Two days later, we finally got our answer.
We had gone looking for reassurance.
Instead, we were about to receive news that would divide our lives into two parts: everything before and everything after.
An answer no parent should ever have to hear.
Four letters changed everything.
DIPG.
The Day Everything Changed
December 18, 2024, started with an MRI.
It was just the three of us that day. As they got her ready, they needed to start an IV, and Kinlee was scared. They used numbing spray and gave her little goggles to wear while a small buzzing device helped distract her from the needle.
When it was time for the MRI, they asked which one of us wanted to go back with her. Because I was a nurse, we decided I would go.
We were told the scan should take about 45 minutes.
As time passed, Kinlee started getting restless. A few times they came in to reposition her and remind her to stay still. Nothing about that seemed alarming. Then, the last time they came in, they told me they needed me to step out.
I didn't think anything of it.
When I walked out, the radiologist was sitting at the desk on the phone. He turned to look at me.
Then I heard him say, “No, I have Mom here with me now.”
I still didn't know.
He handed me the phone. On the other end was our pediatrician's office.
They told me they had found something on Kinlee's scan. A mass in her brain. Two spots, possibly three.
It wasn't good.
They told us we would be taken downstairs to the emergency room, and from there, they would take over and we would be admitted.
We had walked into that hospital looking for an explanation for a handful of symptoms.
We were about to walk into an entirely different life.
The Words No Parent Should Hear
They walked me back out to where Quincy was waiting.
The moment I saw him, I fell into his arms and cried uncontrollably. He kept asking me what happened, trying to understand what I had just been told.
I couldn't get the words out.
Finally, I said them.
"They found a mass in her brain."
They took us to Kinlee.
I remember walking through what felt like endless, winding hallways as they took us across buildings and down into the emergency room. It seemed to take forever.
When we finally got to her room, I could barely look at my baby without crying.
Doctors and nurses were constantly coming and going. There were so many people talking to us, but at first, we still didn't have a name for what they had found.
Everyone just kept telling us how sorry they were.
We had already changed Kinlee into her pajamas when the ER doctor came to speak with us.
She was a woman, and she brought Quincy and me into a small family room down the hall. She explained what she could about what they had found, but we still didn't have the answers we desperately needed.
Again, we heard how sorry everyone was.
Eventually, she left Quincy and me alone in that little room.
That was where I fell apart.
I cried. I screamed.
"That's my baby. She's just a baby. That's my baby."
It felt like we were in that room forever.
Eventually, Quincy grabbed me and told me we were going to get through this. Kinlee was going to be okay. We were going to be okay. But we had to pull ourselves together because our baby was waiting for us.
So we wiped our faces and walked back out.
I can still remember what happened next as clearly as if it were a scene from a television show.
As we walked down the hallway, we passed a doctor. He looked up at me as we passed, and I looked back over my shoulder at him. It was like a moment from Grey's Anatomy.
There was something in his face I will never forget.
Sadness. Defeat.
I looked back again and watched him walk into the room Quincy and I had just left.
I remember thinking, "He's looking for us."
When we got back to Kinlee's room, the Child Life team had brought her a Barbie, coloring supplies, and an iPad to play on.
There she was, sitting in her pajamas, coloring and playing, surrounded by little things meant to make her feel comfortable.
And then that same doctor came in.
He asked if we were Kinlee's parents and told us he needed to speak with us.
So once again, we walked back into that little room.
But this time was different.
This doctor began explaining what they had found, and for the first time that day, someone gave what was happening to our daughter a name.
Diffuse Intrinsic Pontine Glioma. DIPG.
I remember questioning him.
"How do you know? You haven't even done a biopsy."
He explained that because of where the tumor was located and how it appeared on her imaging, they could recognize DIPG without a biopsy.
I couldn't accept it.
I remember crying and screaming at him.
"No. You don't know what you're talking about. You have to do something. She's a baby. She's a baby. She's my baby."
And then came the words no parent is ever prepared to hear.
There was no cure. No effective treatment. There was no surgery that could simply remove it. Average expectancy was 6-9 months. Her tumor was already the size of a golf ball in the brainstem.
We were told that the best hope we had was for Kinlee to be accepted into a clinical trial that could prolong life.
And we were told to take her home and make memories.
Then I looked him in the eye and asked a question no parent should ever have to ask.
"How long does my baby have?"
He dropped his head, shook it, and said:
"Days. Maybe weeks. This is highly aggressive."
I remember turning to Quincy.
I started hitting him as I cried, over and over again.
"You said she would be okay. You promised me she would be okay."
Because he had.
Just minutes before, when I was falling apart in that room, he had held me and told me that Kinlee was going to be okay. That we were going to be okay. We were going to get through this.
Neither one of us knew yet that there are some promises a parent makes because the alternative is simply too impossible to believe.
I wasn't angry at Quincy.
I was terrified.
I wanted him to make what that doctor was saying untrue. I wanted the promise he had just made me to somehow be stronger than the words we had just heard.
Our baby had DIPG.
And they were telling us there was no cure.
Hours earlier, we had walked into the hospital looking for an answer.
Now we had one.
Our nine-year-old daughter had DIPG.
And somehow, we were supposed to walk back into her room, where she was sitting in her pajamas with her new Barbie, coloring supplies, and iPad, and figure out what came next.
The initial plan was to admit Kinlee to the hospital. They had already started her on IV steroids, and we were preparing for the possibility that we wouldn't be going home. But after everything we had just been told, Quincy was firm about one thing. If there was nothing more they were going to do for our daughter at that moment, he didn't want her spending unnecessary time in a hospital bed, being poked and prodded.
He wanted her home.
He wanted her surrounded by the people she loved, sleeping in her own bed, and enjoying whatever sense of normalcy we could give her.
We were scheduled to meet with the oncology team on December 23, 2024.
Until then, we made the decision to take our baby home.
Home was two and a half hours away.
By the time we finally made it through our front door, it was well after midnight. December 18 had come and gone, but the words we'd heard that day were coming home with us.
We had left home that morning hoping for answers. We returned with a diagnosis we could barely comprehend and a future that suddenly felt terrifyingly uncertain.
But for the next few days, we wanted Kinlee to have something familiar.
Her home. Her family. Her own bed.
A little bit of normal before we met with the oncology team and began figuring out what came next.
Finding Our Footing in a World We Never Chose
The days following Kinlee's diagnosis were a blur.
Our home was filled with family and friends. People came to visit, stayed with us, brought food, prayed with us, and did whatever they could to offer comfort.
There were so many tears.
So many prayers.
And so many moments when we simply sat together, trying to process what we had been told. We spent as much time with Kinlee as we could. We didn't know what the future held, and we were still struggling to understand how our lives had changed so drastically in a matter of hours. But life around us hadn't stopped.
Christmas was approaching, and we still had three children who deserved to experience the joy of the season.
On December 23, 2024, we returned to Texas Children's Hospital in Houston for our first appointment with Kinlee's oncology team. This time, all five of us went together. Quincy, Karsen, Kylynn, Kinlee, and me. We had planned to take the kids to the Children's Museum in Houston after the appointment. We wanted to give them something fun to look forward to, something that felt normal in the middle of everything happening around us.
When we arrived, we were taken into a room filled with people. There were members of the oncology team, occupational therapy, social workers, and Child Life specialists. Neurosurgery had also been consulted, and the neurosurgeon came down to meet with us. It was overwhelming. So many faces. So many different roles. So much information.
While Quincy and I met with the medical team, the kids went with a Child Life specialist and made ornaments. It gave them something enjoyable to do while we had conversations no parent ever imagines having. The team explained that Kinlee would remain on steroids to help reduce swelling and minimize the symptoms caused by the tumor. They also discussed the next steps in her treatment. A biopsy would be performed to obtain tissue from the tumor, and radiation would be the standard treatment. The neurosurgeon explained that he would be leaving town, so we scheduled Kinlee's biopsy for when he returned.
January 7, 2025.
Another date that would become part of our family's story.
But first, we had Christmas. And the people around us made sure our children had one to remember. Friends, family, and members of our community came together in ways we will never forget. People showed up, helped, gave, and loved on our family. They made sure our kids had an amazing Christmas, even though the adults around them were carrying so much fear and uncertainty. We spent time with family. We celebrated Christmas. We welcomed the New Year. And for those couple of weeks, we held tightly to every opportunity to simply be together.
But as January 7 approached, everything began to feel very real again.
That morning, we returned to Texas Children's Hospital for Kinlee's brain biopsy. Our nine-year-old little girl was going to undergo surgery on her brain. There is nothing that can truly prepare a parent for that. But Kinlee did remarkably well.
By that evening, she was already up and walking. She didn't require extensive pain medication, and her recovery surprised even the doctors. And in true Stink fashion, one of the things that impressed her most about the experience was the hospital food. She absolutely loved their chicken strips and macaroni and cheese. Of all the things happening around her, our girl was making sure everyone knew the food was good.
Those were the moments that reminded us that underneath the diagnosis, the appointments, and the medical procedures, she was still our Kinlee. Still finding things to enjoy. Still making us smile. Still Stink.
On January 23, 2025, Kinlee began what would be six weeks of radiation treatments at MD Anderson Hospital. We were officially stepping into the world of childhood cancer treatment. A world we had never imagined becoming part of.
We didn't know everything that was waiting ahead of us. We only knew that we were going to face it together.
Her fight had begun. And we were going to be right there beside her.
Just Beat It
Before Kinlee could begin radiation, she had to go through a simulation appointment where she was fitted for her radiation mask. The simulation gave her an opportunity to experience what the treatments would be like and helped prepare her for what was ahead.
During the appointment, someone asked Kinlee what kind of music she wanted to listen to. Without hesitation, she requested Michael Jackson. "Beat It." She won the entire room over in that single statement. And then she told them something that none of us would forget. "That's my cancer song."
The room filled with smiles, laughter, singing, and even a little dancing. Everyone was impressed with her taste in music. They kept telling us how amazing it was that a little girl her age loved Michael Jackson. But that was our Stink. She had always loved music, and she had never been afraid to let everyone know exactly what she liked.
In a room where we were preparing for something frightening, Kinlee somehow managed to lighten the mood.
On January 23, 2025, Kinlee began radiation at MD Anderson Cancer Center in Houston. Her oncology care continued through Texas Children's Hospital, so our days involved going back and forth between the two hospitals.
Five days a week, for six weeks, radiation became part of our routine.
We grew to love her radiation team at MD Anderson. They were the people we saw day after day, the people who helped guide Kinlee through her treatments, and the people who made an incredibly difficult experience a little easier.
For much of those six weeks, Kinlee did remarkably well. But during the final two weeks, things began to change.
She started experiencing significant pain and uncontrollable vomiting. I was communicating what was happening to her oncology team at Texas Children's, but we weren't getting the relief she desperately needed.
Finally, on what should have been the Friday of her last full week of radiation, I called her radiation nurse while we were on our way to Houston. I told her how sick Kinlee was and that I didn't know what else to do. She told me she was personally going to contact Texas Children's and wanted us to go directly there.So we did.
At Texas Children's, they started an IV, gave Kinlee fluids, and administered several medications to try to get her vomiting under control. Eventually, she stopped throwing up. Once she was able to eat something and keep it down, we were discharged. That was it. No scans. No testing. We went home that Friday night. But the relief didn't last. By Sunday morning, Kinlee was vomiting again.
We were entering what was to be her final week of radiation. Her last treatment had originally been scheduled for Wednesday, but because she had missed Friday, her final treatment was moved to Thursday.
And somehow, despite everything, we made it to that last day. Kinlee finished radiation. She got to ring the bell.
After six weeks of treatments, appointments, traveling between hospitals, and watching our little girl endure more than any child should have to, we had reached a milestone. We brought cookies for the team as a thank you. We were supposed to be celebrating.
We had an appointment scheduled with her radiation oncologist that day, and the team had offered to cancel it. But we decided to keep it because we wanted the opportunity to see everyone and say goodbye. We had grown close to her radiation team, and they had become an important part of Kinlee's journey.
But during that appointment, things changed quickly.
By the time it was over, her radiation oncologist told us she wasn't comfortable sending Kinlee home without having her evaluated by the pediatric oncology department upstairs at MD Anderson. So we went.
And that was when we learned that Kinlee was suffering from severe hydrocephalus. Fluid was building up inside her brain. The symptoms we had been watching her struggle with were far more serious than we had realized. And suddenly, the day we had expected to end with a celebration was taking another terrifying turn.
Kinlee needed emergency surgery. That day.
We had walked into MD Anderson that morning expecting to celebrate the end of radiation. Instead, we were facing another brain surgery. And once again, everything changed in a matter of hours.
An Unexpected Change
Because it was Kinlee's final day of radiation, we had brought Karsen and Kylynn with us to Houston. All five of us were together. We had planned to go out afterward and celebrate. After six weeks of radiation, we wanted to recognize what Kinlee had accomplished and enjoy a little time together as a family. Instead, we found ourselves facing another emergency.
Kinlee was diagnosed with severe obstructive hydrocephalus, and doctors told us she needed surgery that day to relieve the buildup of fluid in her brain. A shunt would be placed to help drain the fluid. And just like that, our celebration turned into another hospital stay.
All five of us ended up crammed into the neuro-pediatric intensive care unit while Kinlee underwent surgery and began recovering.We slept wherever we could. On couches. On floors. Wherever there was a little space. For the next several days, that hospital became our home. It wasn't how we had imagined celebrating the end of radiation.
But we were together. And after a few days, Kinlee recovered well enough for us to finally take her home.
By then, another possibility had opened up for her. Kinlee had been accepted into a clinical trial involving ONC201 at MD Anderson Cancer Center. We made the decision to transfer her oncology care completely to MD Anderson, where she had already received her radiation treatments.
After months of learning about DIPG, hearing that there was no cure, and trying to understand what options existed for our daughter, we finally had an opportunity to pursue an experimental treatment. By the end of March 2025, Kinlee was beginning the clinical trial. We knew there were no guarantees. But we were going to keep fighting for every opportunity available to our little girl.
But just as we began finding our footing, another complication arose. Around Easter, Kinlee went in for one of her weekly checkups. We were only about two weeks away from leaving for her very first trip to Disney World.
During that appointment, her medical team became concerned that her tumor might be progressing. She started vomiting during the visit, and just wasn't herself.
She was admitted to the hospital.
Further evaluation revealed that Kinlee was once again experiencing hydrocephalus, a buildup of fluid in her brain. It was causing symptoms similar to those we had seen before her first shunt surgery. They initially told us that they felt her tumor was progressing. Everything on imaging looked like it should for her shunt. But something was just not sitting right.
At the urging of both her oncologist and me, neurosurgery reevaluated her condition. When they went back in, they discovered that her shunt valve had malfunctioned, and was not draining correctly. It needed to be replaced. They felt a different type of shunt would be better. Once again, our little girl underwent brain surgery. We stayed in the hospital from Wednesday until Sunday, finally being discharged Easter afternoon.
And about a week and a half later, we were on our way to Disney World.
The Most Magical Place On Earth
After everything Kinlee had endured, we were determined to make that trip everything she wanted it to be. And we did. We spent our days together as a family, doing the things Kinlee wanted to do, enjoying the parks, and making memories that we will carry with us forever. For those days, we weren't focused on appointments, treatments, or what might happen next. We were simply a family enjoying Disney World together. We spent time at the most beautiful beach resort. We visited every park multiple times. We met as many characters as we could. We rode rides. Ate desserts. It was literally the trip of a lifetime, and what absolute dreams were made of. The magic of Disney was real for our family because we temporarily got to escape the nightmare we were living.
When we returned home, Kinlee had a scan in May that was reported as stable. We were grateful for that news.
But about a month later, things began changing rapidly. Kinlee started declining, and we contacted her medical team. They brought her in for an emergency evaluation. What we were told was devastating.
Her doctors explained that the tumor had herniated through her brainstem and that the swelling was severe. They did not expect her to survive the weekend. We were sent home that Friday and began hospice care.
By Sunday, Kinlee was in respiratory failure. I refused to sit by while she suffered. We took her to our local emergency room, and what followed was an absolute nightmare. I didn't think we were leaving that room with her that night.
She ultimately spent approximately a month hospitalized at MD Anderson. But something happened during that hospitalization that none of us had expected. By the time Kinlee was discharged, her medical team was describing her recovery as remarkable. We were told they had never seen a situation quite like hers, where the herniation they had observed was no longer present. The bleeding they saw was gone, the swelling decreased, and the tumor was no longer herniated. We had gone from being told our daughter likely wouldn't survive the weekend to bringing her home again.
Over the following months, I worked closely with Kinlee's medical teams to develop and adjust a treatment regimen that helped keep her relatively stable. I studied, I researched, I drove myself and probably our team absolutely crazy.
And during that time, we kept living. We kept making plans. We kept finding ways to give Kinlee the experiences she wanted. One of those wishes was to return to Disney World. This time, she wanted to see Disney during the holidays. And that's exactly what we did.
I flew with all three of my children, and we spent an entire week together. We went to Mickey's Not So Scary Halloween Party. She got to see the decor go from Halloween to Christmas. We visited the princesses Kinlee hadn't met during our first trip. She saw some of her favorites for a second time. She got to have dinner at Cinderella's Royal Table. We ate all the food, enjoyed the parks, and made another collection of memories together.
There was so much uncertainty surrounding our lives, but those days gave us something precious. Time together.
Time to laugh. Time to be a family. And time for Kinlee to simply be a little girl who loved Disney.
For several months, we were able to maintain a sense of stability.
But between those hospital stays and appointments were moments of joy that DIPG could never take away from us. And when I look back on those months, I don't want to remember only the scans, surgeries, and frightening conversations.
I want to remember the princesses. The laughter. The food. And the little girl who had a wish to see Disney at the holidays.
Because even in the middle of the fight, Kinlee was still living.
Throughout Kinlee's journey, we did everything we could to make sure DIPG didn't take away the parts of childhood she could still enjoy. Her life didn't stop when she was diagnosed. We continued her schoolwork because her education still mattered. We continued physical therapy, occupational therapy, and speech therapy to help her maintain as much independence and ability as possible. All of that happened alongside the countless medical appointments, scans, treatments, and hospital visits that had become part of our lives.
Our schedules looked nothing like they had before December 18, 2024. But we were determined to give Kinlee as much normalcy as we could. We traveled. We spent time with family. We made plans and took trips. We found ways to do the things she wanted to do. And whenever possible, we let Kinlee lead the way.
If there was something she wanted to experience, we did our best to make it happen. Because she was still a little girl with favorite places, favorite foods, opinions, plans, and things she wanted to look forward to. She was still a sister. Still a daughter. Still a friend. Still our Stink.
There were difficult days, of course. Days filled with worry, exhaustion, and uncertainty. Days when her medical needs demanded nearly everything we had. But there were also beautiful days. Days filled with laughter, adventures, family, and memories we never would have wanted to miss. We learned to appreciate moments that once might have seemed ordinary. For much of that time, we were able to find a rhythm that allowed Kinlee to keep enjoying life while we continued fighting for her.
But around Thanksgiving 2025, we began noticing another change. Kinlee seemed to have less energy. She was becoming more tired, and we could see that things were beginning to shift again.We didn't yet know what the coming weeks would bring.
And then came January 17, 2026.
The day that marked the beginning of the end of our time with our little girl.
The Day Everything Changed. Again
January 17, 2026.
It's another date I will never forget.
That morning, my mom had come to stay with Kinlee, and Quincy was off work. Kylynn had a volleyball tournament about two hours away, so I was getting ready to leave with her. Before we left, I remember kissing Kinlee goodbye while she was lying on the couch. At the last minute, she asked if she could come with me.
I told her no, that she needed to stay home with her MiMi. It was such an ordinary moment. A mama leaving for one child's sporting event while another stayed home with family.
I had no idea what was about to happen.
We made the drive to Kylynn's tournament, and when we arrived, I called Quincy to let him know we had made it safely. He didn't answer. I figured he was probably still asleep.
But just as I pulled into the gym, my phone rang. It was Quincy calling me back. He told me I needed to get home.
Kinlee had become unresponsive. She had vomited, stopped breathing, and they had to perform CPR on her.
An ambulance had taken her to our local hospital.
I was two hours away from my baby. And all I knew was that she had stopped breathing. I turned around and raced home. A drive that should have taken two hours took me one.
By the time I got back, Kinlee was at our local hospital, and arrangements were made to transfer her by helicopter to Texas Children's Hospital in Houston.
Once again, our little girl was fighting for her life.
But this time felt different.
We had spent more than a year learning to live alongside a diagnosis we never wanted. We had endured surgeries, radiation, hospitalizations, frightening scans, and moments when doctors had told us to prepare for the worst.
And somehow, through it all, we had continued finding ways to live.
But January 17 marked the beginning of a chapter none of us were prepared for.
Kinlee was flown to Texas Children's Hospital.And what followed would be the final two months of her life.
Two months that would change us forever.
Her Fight Became Our Fight
When Kinlee arrived at Texas Children's Hospital, she was intubated and sedated. We were told that her tumor had grown significantly. Her doctors at MD Anderson no longer believed that additional treatment would be effective against the progression of her disease. After everything we had been through, after every surgery, every treatment, every hospital stay, and every time we had been told to prepare for the worst, we were facing another devastating reality.
But I wasn't ready to give up on my little girl.
We remained in the Neuro Pediatric Intensive Care Unit, where the days were filled with difficult conversations, medical decisions, and uncertainty. And there were battles.
I went round and round with doctors, nurses, and different medical teams because I needed them to understand something. We didn't get this far by surrounding Kinlee with people who were ready to give up on her. And we weren't going to start now. We had spent more than a year advocating for our daughter, learning everything we could, asking questions, and fighting for every opportunity available to her. We weren't going to stop advocating for her simply because the circumstances had become more difficult.
So we fought.
And Kinlee fought.
During those weeks, Kinlee experienced setbacks and complications. She was able to come off the ventilator more than once, but respiratory difficulties meant she needed to be intubated again.
But something I want people to understand is that Kinlee was not sedated or unconscious throughout those final two months.
She was still interacting with us. She could respond to our questions. She could nod her head. She could let us know when she wanted something or needed something. She was still making us and her nurses laugh. Even during the times when she was on the ventilator, she found ways to communicate with us.
And when she was extubated, we continued communicating with our girl. She was still there. Still letting us know what she wanted. Still very much our Stink.
Those weeks weren't easy. There were difficult days, frightening moments, and decisions no parent should ever have to make. But there were also moments when we could interact with our daughter, understand what she needed, and simply be together. And there were people who made those days a little easier.
Some of the most incredible nurses cared for Kinlee during that hospitalization. Nurses who showed compassion, who cared for her with tenderness, and who became an important part of our lives during an unimaginably difficult time. We will never forget them.
For nearly two months, Texas Children's Hospital became our home. We continued loving, protecting, and advocating for our little girl. And Kinlee continued showing us just how much fight she had left.
It wasn't until the final two or three days of her life that things changed.
Kinlee closed her eyes. And she didn't open them again.
After fifteen months of fighting DIPG, enduring treatments, surgeries, complications, and more than any child should ever have to experience, our little girl's body was tired. And as her mama and daddy, we recognized where she was in her journey. She was reaching the end.
On March 10, 2026, at 11:19 p.m., our beautiful Kinlee Karter Owens passed away peacefully in my arms.
It was just the three of us. Kinlee, Quincy, and me. Her mama and daddy were right there with her. The same two people who had welcomed her into this world were holding her as she left it.
Our daughter was ten years old. And our world would never be the same.
Kinlee's fight with DIPG had ended.
But ours was just beginning.
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