Kelsea Finds Purpose After a Grade 3 Brain Cancer (Oligodendroglioma) Diagnosis
Kelsea’s experience with grade 3 oligodendroglioma, a rare type of brain cancer, reframed her life’s priorities while highlighting her determination to live fully with cancer. Diagnosed in 2018, she was a stay-at-home mom to a toddler when she first noticed unsettling symptoms. Surprisingly, the common headaches she thought were inherited turned out to mask something life-changing.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Her initial signs were subtle: waking up disoriented, memory gaps, and routine headaches. It wasn’t until a particularly worrying episode that Kelsea’s father-in-law, a physician, insisted she see a neurologist. Normal EEG results offered temporary comfort, but an MRI quickly revealed a mass in her brain. Despite reassurances from her neurosurgeon that brain cancer was unlikely, the pathology soon confirmed that she had grade 3 oligodendroglioma. (Editor’s Note: Oligodendroglioma is a tumor in the central nervous system, which means that it affects the brain or spinal cord. It starts in glial cells, the support cells of the nervous system.)
Kelsea faced major brain surgery and confronted the possibility of lasting changes to her sense of self. The operation successfully removed 99% of her tumor, but aggressive follow-up was necessary. Her team at the Huntsman Cancer Institute coordinated chemotherapy and concurrent radiation, navigating fertility preservation concerns along the way. With the help of her care team, Kelsea balanced treatment, family, and fear with remarkable strength.
Even after treatment, the challenge wasn’t over. Recurrence worries and “scanxiety” became constant companions, a reality for many with brain tumors that don’t have a cure. Regular MRIs and the emotional weight of not knowing what tomorrow brings are now part of her story.
Despite this, Kelsea remains grateful for her two children, stays active, and intentionally chooses hope whenever possible. She shares her story to encourage others to find joy and gratitude in the small moments. Her resilience is both a message of hope and an invitation to live with authenticity, regardless of the diagnosis.
Watch Kelsea’s video and browse the transcript of her interview. You’ll learn more about:
- How early symptoms like headaches and memory lapses can signal serious health conditions
- Why finding purpose and meaning in daily life matters so much in establishing “normalcy” in the face of a cancer diagnosis
- How supportive care teams make a difference in the face of complicated choices due to aggressive brain cancer
- Resilience is not about perfection, but about choosing gratitude on even the hardest days
- A universal truth: Learning to appreciate small joys is vital for anyone facing chronic illness
- Name: Kelsea K.
- Diagnosis:
- Brain Cancer (Oligodendroglioma)
- Age at Diagnosis:
- 26
- Grade:
- Grade 3
- Symptoms:
- Persistent headaches
- Memory gaps
- Disorientation
- Visual auras
- Treatments:
- Surgery: brain tumor resection
- Chemotherapy
- Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- My name is Kelsea
- The first signs that something was wrong
- My early symptoms: headaches, auras, and a sore tongue
- Seeing the neurologist and getting an EEG and MRI
- I was referred to oncology and neurosurgery
- Facing brain surgery as a young mom
- Hearing the biopsy results after surgery
- Learning it was aggressive Grade 3 cancer
- Biomarker and genetic testing
- My treatment plan: radiation, chemo, and fertility decisions
- Chemo, radiation, hair loss, and completing treatment
- Post-treatment monitoring and long-term MRI schedule
- Scanxiety and living with “when,” not “if”
- Family, fertility, and grief for the life I imagined
- Finding normalcy and purpose as a young survivor
- What hope means after a brain cancer diagnosis
- Live like you are not guaranteed tomorrow
My name is Kelsea
I was diagnosed in 2018, and my diagnosis is a grade 3 oligodendroglioma, which is brain cancer. And I live in Arizona.
So I have been a stay at home mom since I was diagnosed. I was diagnosed when my son was about 20 months old. Obviously, my husband works and I stay at home with my two kids. So I am a mom to two kids now. I had my second baby girl in December of 2020. They keep me really busy.
I do like to do calligraphy, which is a little hard because my hands are kind of funky now. But I like doing that. I like audiobooks. I like exercising. I think that is about it.
The first signs that something was wrong
I did not really know something was wrong. Over time my husband was camping, and I woke up, and I did not know where I was. I remember that I had a son and that I was in Las Vegas. That is where I lived at the time. But I felt really sick. I was super confused. I could not remember what I had done the day before.
It turns out I had driven to his campsite and given him [something he forgot]. So I drove out to give him something, but I could not remember any of that. That was my initial [sign that] something was off, but I did not think it was anything.
Thankfully, my husband’s dad, my father in law, is a doctor, just a family doc. He said, “Let me call my dad,” because I called my husband and said, “I do not know what is going on. I am panicking. I do not know what is happening.” My father in law said to go see a neurologist just to be safe. Obviously, he knew those were neurological symptoms. I had no idea.
I was able to see a neurologist maybe a month later. It was really hard to get into a neurologist there. From there, it all just snowballed.
My early symptoms: headaches, auras, and a sore tongue
I always had headaches. My dad has headaches, so I just felt like, oh, it has always been genetic per se. I am predisposed to headaches because my dad has headaches, bad headaches, like migraines. I would have auras sometimes, like squiggly lines and stuff, when I was a teenager. When I was diagnosed, that was almost ten plus years later.
Obviously, not everyone who has headaches has a brain tumor, so it really was not like, this is [definitely] because of that. I never would have thought, honestly, never in a million years.
Eventually my husband said, “My dad thinks you had a seizure.” I thought, oh, my tongue does feel kind of sore. They kind of thought—I mean, they still obviously do not know, because I was asleep and no one was there—that I had a grand mal seizure. I had bit my tongue. Then I came to. It obviously woke me up. I came to, and then I was super confused, super nauseous, and did not really know what was going on.
Seeing the neurologist and getting an EEG and MRI
I went to see a neurologist, and he had me walk down a straight line, like a sobriety test, and do weird things with my hands and name things like, “This is a pen, this is a [phone], this is a whatever.” He said, “You seem totally normal. You are really healthy. I cannot really see anything coming of this, but we will order an EEG and an MRI.”
About a week later, I had my EEG, and that came back normal. Then probably a week or two after that, I had my MRI of my brain. I had it done, and they literally called me like 30 minutes later because they sent the report over stat to their office saying I had a mass on my brain.
From there, they said, well, it might be MS, it might be something else. But usually MS is like spots on your brain. I do not know if you know anything about MS, but it was not MS. They knew it was not. I do not know if they just did not want to tell me what was exactly wrong, because they are not oncologists and they are not neurosurgeons, and so they really could not tell me. I do not blame them whatsoever.
I was referred to oncology and neurosurgery
They said, “We are going to send you over to oncology and stat to neurosurgery to get appointments with them.” From there, I saw my oncologist, and he said, “Hey, we just need to get this out.”
It was not a neuro oncologist. It was just a regular oncologist there in Las Vegas, because they do not have any neuro oncologists there. I said, “Okay, sounds good.” Then I saw the neurosurgeon and they said, “Yeah, we obviously do need to get it out.” Apparently it was the size of an egg, about this big.
They said, “We will call you and schedule you for surgery.” It was not super urgent that they got it out, I do not think, because they did not think that it was cancer. The neurosurgeon basically said, “I will bet you a million bucks this is not cancer. I bet you it is either grade two or below, or just benign. We will get it out.” Because I was so young and so healthy, they just really did not expect it to be what it was.
Then I got to go for surgery. It was May 1st of 2018. Everything proceeded from there.
Facing brain surgery as a young mom
The day before [surgery] was super heartbreaking. Basically it was almost like I had to say goodbye to my son because I did not know what was going to happen. I did not know. I had never been through a major surgery before. I really just thought, this might be it. I do not know. Maybe that is crazy to think, but it is brain surgery. It is not your arm or your leg.
This is so sad, but when people say, “Oh my, I am so worried about my dad,” or whoever, having ankle surgery or whatever, I am just like, that is nothing compared to brain surgery. This is huge.
I could come back, and they even said, “We had to take more of your brain out than we anticipated,” so I could be a totally different person. [My son] might not even know me as I was. My tumor was in my motor strip, so I had to have all these really grand expectations for what might happen just because I did not know.
They said, “We have to get into your motor strip. We will try really hard to make sure you have function, but we cannot guarantee any of that.” It was a lot. It was the hardest time of my life.
I am religious, so it is just a part of [my faith that] you trust that it is going to be okay and know that if it is not okay, then it is all in the plan, I guess.
Hearing the biopsy results after surgery
I was in the ICU for, I think, three days. My head was shaved. You can kind of see where my scar is, basically right down the middle and then it goes back here. My head was all shaved right here so they could remove [the tumor]. They pulled back my skin and whatnot.
I had a tube in my head. They took my tube out, and they came back. I remember that the PA came into my room. I was not awake for a lot of it, and I do not think they expected me to be. I would walk around, but that was basically it. That was the only time I was pretty much awake, and to eat, but I did not really eat anything. I do not know if it was because the food was gross or I did not want to eat. I do remember the food was gross.
The neurosurgeon’s PA came in and said, “We got 99% of the tumor. The initial test that we did came back a higher grade than we expected.” That was kind of all we really knew.
They had taken the whole thing out, but they also took a tumor sample and sent it off to UCLA because that was the closest neuro oncology center. They sent that to UCLA, and then about a week or so later, I went to see my neurosurgeon to get my stitches out. I had stitches, and then I had a staple where my port into my head was, [for the tube] to get it out. He said, almost as a side note, “You might have to do some chemo and you might have to do some radiation. Here is who I would refer you to.” I was just like, okay.
Learning it was aggressive Grade 3 cancer
I saw my oncologist, and he said, “Yeah, it is a grade three, basically an aggressive form of cancer. I do not know what exact type it is yet because the biopsy has not come back, but I know that it is cancer and it is aggressive.”
Before that, not knowing what the tumor was in the first place, it was pretty big, not normal big. My father in law had told my husband, “She could have a year or less to live,” because it could be really bad. He did not tell me that. I am glad he did not tell me that, because I probably would have been even more of a mess than I was. I cannot imagine being my husband in that scenario.
At that point, we were in limbo waiting for the biopsy. I said, “Hey, I want to get a second opinion.” I called Huntsman up in Salt Lake City. My sister lives up there, and I knew they had a good [center]. It would be easier for me to go up there instead of to LA, just because I had family there so I could stay.
I said, “Hey, can I come up and see you guys?” They became my liaison with the biopsy. We waited weeks. First they sent the sample over, and then it was not enough tissue for them to get a good reading on it. They had to send more over. They had to go through the hospital and get more of my brain sample.
Finally, I was calling every day up to Huntsman and saying, “Hey, what is it?” They said it was either this astrocytoma, which was worse, or an oligodendroglioma, which is better because it responds to treatment better. Astrocytomas can then increase in grade to a glioblastoma, and that is the trajectory there, whereas oligodendrogliomas just stay—the highest grade is grade three, which is the most aggressive grade for that kind of tumor.
His PA and MA up in Salt Lake, my neuro oncologist’s team up there, I was calling, calling, calling. Finally she said she had the result but wanted the doctor to tell me. I said, “I do not care who tells me, just tell me.”
She was trying not to jump the gun or break HIPAA, but she finally implied that it was an oligodendroglioma over the astrocytoma, which was huge. But hearing that it was a higher grade than they even expected, especially because I went in expecting it to be benign—I had even called my parents and said, “I am actually going to be okay. Hooray! This is all going to be fine. I am going to get it out,” and my neurosurgeon said all these really positive things. Then to have it turn out to be the complete opposite was a total gut punch.
I remember bawling in the car. My husband was hitting our steering wheel. He was so mad because we were led to believe that it was one thing and it was the complete opposite. Not only was it cancer, but it was an aggressive form of cancer.
Once we heard that it was an oligodendroglioma, that was probably the best news we had heard in a long time, just because it is treatable and all that. But I still obviously had to do the chemo and radiation and whatnot.
Biomarker and genetic testing
I do not believe I got biomarker or genetic testing at that time.
Later on, I did get genetic testing to see if I had certain genes like the BRCA gene, because my grandma died from ovarian cancer. It showed genetic markers that were positive, and that is why it got classified as an oligodendroglioma.
But I do not think it was genetically tested in the way people think of genetic testing. I actually do not really know the answer to that.
My treatment plan: radiation, chemo, and fertility decisions
I did not really have options just because it was aggressive. Basically, they said up in Salt Lake, “We are just going to give your oncologist and your radiation oncologist this treatment plan. You do not really have a choice if you want to live.” I am glad that I did it because all the research shows that it gives you the longer time before it actually comes back.
I did not really have a choice because of the grade of the tumor. There were two types of chemo that I could have done. There were two types of chemo that I could have done, but my doctor up in Salt Lake said, “Let us try this one first.” The other one can be a little more harsh. You have to come into the center. It is through a port and things like that. If I saw the name of it, I would probably recognize it, but I do not know what it was off the top of my head.
I ended up doing an oral chemo, and then I did radiation concurrently with that over about 30 days. It was a lower dose.
In between that, I was trying to get into a fertility specialist. They said, “You need to start treatment right away,” because of how aggressive my tumor was. Ultimately, they would not have been able to harvest my eggs before I needed to start treatment. My only option there was getting the Depo-Provera shot, which basically puts your ovaries and eggs into hibernation mode, basically puts you into menopause, and then once you stop taking it, it pulls you back out.
Talking to my father in law, he said it was probably not the best idea, because there are a bunch of side effects. He said infertility in general is really hard, and having to do the transplants and all the other things with infertility is a lot. He said, essentially, “You have already been through a lot. I do not know if you can do this and then do that.” I love my father in law to death. He saved my life. I do not know if his thinking was, “You may not be alive,” I do not know. That is probably a question for him that he would not answer because he is just so kind and protective.
Regardless, my doctors in Salt Lake said, “We have had a lot of people who go through this treatment who are able to have kids on the back end. There is a chance that you will lose your fertility, but the chance is not extremely high, especially if you were able to get pregnant with your first fairly reasonably quickly, within a year.” And I was, and we did not do infertility treatments with our first.
If we had had to do fertility treatments with our first, they would have said, “Yeah, it is probably not good,” and at that point we would have just had to decide whether we really wanted another kid or not. We probably would not have had another kid, given all the circumstances, now looking back, seven or eight years later.
Chemo, radiation, hair loss, and completing treatment
I went through radiation and chemo and lost my hair even more. It had been shaved but started growing back, and then gradually it started falling out again in clumps all throughout here because of the radiation to my brain. You can see in my pictures that it started as this big circle around where the radiation was, and it would constantly fall lower and lower and lower.
I wore a hat. I was going to shave my head, but my sisters in law said, “Do not shave it. Just try and keep it as long as you can, and then if you need to, shave it.” I ended up never shaving my head, because I could wear a hat to cover [the bald areas], and then I would have this little back stuff. It worked. It looks hideous now, looking back, but I was glad I had hair. I feel really grateful that I was able to have hair.
After that, I did chemo and radiation concurrently, and then I went on a higher dose of Temodar (temozolomide). It was a 365-something dose, whatever it is. I did, I believe, five or six days on and then 21 days off. I did that for six cycles. My treatment ended in, I think, January of 2019.
Post-treatment monitoring and long-term MRI schedule
As far as monitoring goes, I had gone up to Salt Lake and done a couple of MRIs up there. They basically said, “We are going to put you on an MRI schedule.” It would be every three months for the first couple years, just to make sure that it is not coming back. Obviously, if it does come back, then we will try the other chemo that you did not do the first time around, the more aggressive chemo per se.
Thankfully, for my tumor type, it responded really well to that chemo and radiation, so they were pretty confident that that was going to work out. It has, pretty well. After a couple of years, I was moved to six-month MRIs. I did that all the way until probably two years ago. Then finally, just this past year and the year before that, I have been doing yearly MRIs.
Scanxiety and living with “when,” not “if”
Of course I experience scan anxiety. I feel like everybody does. It is hard because brain cancer does not have a cure. It is really not an if but a when. It is not like I can be five years out and then not really have to get scans anymore or be checked anymore. I have to have an MRI for the rest of my life every single year.
If they see something, even just a little thing, they usually will just watch it and wait and then see if it grows and scan again in three months. I think it is so interesting because the further I get out from treatment, I feel like the more likely it is to recur. But at the same time, I am only at a yearly MRI. I wonder, am I going to know?
I am on anti-seizure medication. I will be on that for the rest of my life also, even though I only had that one seizure supposedly. I ask myself, should I be having MRIs closer together just because of the likelihood that it is going to recur as I get further from treatment? I do not know. That is a question for my doctors. I do not understand it per se.
At the same time, the anxiety has gotten less and has gotten better as time goes on. When I was first getting my three-month MRIs, that was debilitating, awful. I wish I would have taken a Xanax beforehand. I wish I would have basically been knocked out for a day because it was crippling emotionally. You really just cannot cope. How do you cope knowing that your cancer, at the drop of a hat, could be back?
Now it has gotten a lot better in the sense that time heals, per se. I know people with my same tumor whose cancer came back in a year, and those stories really scared me because that could be me. Why not me? This happened to me already. The worst possible thing ever to happen happened to me already. Why not this too?
It is hard to think, okay, my life is going to be good and normal and fine, when it never will be. That is hard to come to terms with. It just sucks. Knowing that at any moment my life could be 100% different is hard and super unfair.
Family, fertility, and grief for the life I imagined
I look around and see all the other young moms and all the other young moms having kids. I would love to have more kids, but my second pregnancy was super rocky. They had lots of worries about my baby girl when she was in utero. It did not go well. They basically said, “I would not carry another baby,” because obviously you are risking your health and hers.
It is hard to look around and watch. I am so, so grateful that I have the two kids that I have. I know that other people really do not have what I have. On one hand, I am so grateful. On the other hand, I am just like, why is this my life?
Especially being religious, I look at other people who are doing the same things that I am doing—making good family choices and just good choices. They are good people. I look around at my church community and it is like everybody has all these kids and they have this happy family. Everyone comes off as this perfect little unit of family members with the number of kids they have always wanted.
I am sitting here like, why? I feel jilted, like everybody else—literally everybody else—has this life, and I have this one. It is kind of just like, why? I go through phases of being mad about it and being okay with it, but it is what it is.
Finding normalcy and purpose as a young survivor
Obviously, my kids help. I cannot think about it that much because they keep me so busy. My youngest is only four, and she is busy. She is not a sit-on-the-couch type of girl. She is a run-around-and-be-crazy type of girl, which is great. It is nice that I have that distraction. That really is very helpful.
Hopefully I can go back to work once she is in school and things like that, because I wanted to be home with her. Hopefully that can be my distraction. I do feel some sense of purpose by doing these interviews, by helping people understand the young cancer patient experience and how really hard it is. I still do not think anybody really knows how hard it really is. That is lonely.
I always think if I were old and got cancer, I would be fine with it. Obviously people are not fine with it; it is hard. But to have my whole life ahead of me and have to live with this forever, and knowing it will probably take my life before anything else, that is hard.
I love my hobbies. I think it is really important to stay active because that helps my mental health a lot. Even just walking helps. It helps me get out of my head sometimes. Being outside, being in nature, being grateful—even when you do not want to be grateful for anything—helps.
Also, just being mad when you want to be mad helps me go on each day. When you have a really hard day, what are you going to do? You cannot change it. It is what it is. You just kind of have to make the best out of it no matter what, and I try to do that.
I feel like I am more intentional with the things I choose to do, the things I put my time into, and what really matters and what does not. That goes down to how I interact with my kids and how I interact with my family members and my friends, how I want them to know me and remember me.
I want it so that at the end of the day—this sounds morbid—but if I were to die, they would say, “Wow.” Not in a judgmental way, but, “Wow, she was a really good person and she really tried to help others and serve and do everything she could for her family.”
What hope means after a brain cancer diagnosis
I do sometimes have hope and sometimes I have none. Sometimes I have a lot. It is a balance of good days and bad days that get you to the next day. Having that hope, knowing that even if I were to die, everything is going to be okay, helps. Eventually, you find that peace sometimes.
Hope is a tricky word. Do I feel hope all the time? No. But I do feel it, even if it is just barely there.
Live like you are not guaranteed tomorrow
This sounds super cheesy, but just live life like you do not have another day, because you are never guaranteed anything. Be the person that you want to be, and really try to find gratitude and joy in little things, things that people sometimes take for granted.
Live like you are dying. Live like today is your last. Obviously I do not do that perfectly. I try, but it is hard to do that. You think, oh, I got mad at my son for this, and then you think, what if I died tomorrow? It is so hard. You cannot truly live like that, because then you are in a constant guilt trap of, “Oh my goodness, I did this, and now what?”
With your best and with the best intentions, live like you might not see the light of day tomorrow.
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