Hi, I’m Carmen. I’m a 35yo mom of two boys under three years old. Professionally, I am a nurse with a background in burn, trauma, and reconstructive plastic surgery. Since 2023, I have been staying home full-time with my little boys. I love watching them learn! I love reading (primarily sci-fi/fantasy and romance), puzzles and games of every kind (tabletop, computer, escape, etc.), sunsets, and funky/jammy live music. I’ve lived in 5 beautiful states, but Kansas is home.
D-Day (diagnosis day):
On July 3, 2025, I was putting away my Costco delivery and prepping for a group outing to see a local fireworks display, when I started having seizures. My husband, John, was home and was able to call an ambulance right away. I was taken to the ED and had a CT, which showed a tumor. I had surgery 3 days later on July 6. In retrospect, there were warning signs leading up to my seizure (weight loss, headaches, fatigue, difficulty sleeping, mood swings, feeling “weird”) but I was also 4 months postpartum and breastfeeding, so it was easy for everyone, myself included, to attribute the symptoms to that.
Surgery:
Today I’m in surprisingly good shape given everything. The tumor was in the rear of my left frontal lobe, basically between my Broca’s area and my motor cortex. Heading into surgery I expected more language or motor deficits, but I was able to walk shortly after surgery, and my writing and speech seemed close to normal within a few days. Today I describe myself as 90% normal, or my “new normal”. I have some balance/proprioception issues and I have more difficulty with word finding and name recall than before, but they aren’t noticeable to most other people. I was able to discharge home from the hospital just a few days after surgery on July 10.
Support:
From day one I was lucky to have all the support I needed. My amazing husband, John, was my primary caretaker. He stayed with me in the hospital and through all of the (still ongoing) follow-up appointments. There were times when I had difficulty following what was going on, either with my health or at home, and I have never been more grateful to have a husband who is kind, exceedingly capable, and who I absolutely trust with my life and our children. He is also my Durable Power of Attorney for Healthcare which meant I knew he would have the authority to speak up for me during times I was unable.
Our parents and aunts and uncles stepped up to help with the boys. We had moved our family back to Kansas in ‘23 to be closer to family and this experience has really validated that decision. Our family essentially moved into our house, taking shifts so that all the boys’ needs were met. This kept them close so they could visit in the hospital. Our oldest was scheduled to start taking survival swim lessons, daily for 6 weeks, while I was still in the hospital. Our family was able to make that happen, retaining a normal routine for the boys at every opportunity.
Our larger community of family and friends organized a meal train so that everyone who was coming and going from our house was full and cared for. Thank you all so much.
Recovery:
In the month after surgery, after I returned home, I reacted very poorly to dexamethasone, the steroid used after surgery to reduce swelling in my brain. I was unable to sleep for several weeks and ended up experiencing acute psychosis. In an attempt to help me sleep, one of my doctors had me try Zolpidem (Ambien) which caused me to wake up completely disoriented to person, place, and time. Once again, I was surrounded by loving family members who were able to keep me safe and call for help, so I was ok, but those weeks were very scary for everyone involved. I was able to use a combination of an antipsychotic, a couple of benzodiazepines, melatonin, and cannabidiol (CBD) concentrate to manage my insomnia and psychosis until it was safe for me to stop taking the dexamethasone.
I share this part of my story not to frighten or sensationalize, but to remind everyone that unforeseen side-effects occur all the time. My biggest piece of advice for anyone receiving healthcare of any kind is to advocate for yourself or your loved one early and often. In my case, had we noticed the symptoms sooner, we could have tried a different steroid that may not have caused the same symptoms, or we could have been more aggressive with sleep medications sooner. If something doesn’t seem right, it probably isn’t, keep speaking up. Use your CUS words: “I am concerned”, “I am uncomfortable”, “I don’t feel safe.” This is the same language healthcare providers are trained to use and may get their attention faster.
Our youngest was 4 months old in July. I had to stop breastfeeding basically overnight because of my medications. Thankfully our baby took to formula and bottle feeding well. Because of my lifting restrictions after surgery I was not able to lift either boy for months. That was probably the hardest part of recovery because I could not effectively parent either of them during that time. Seeing an oncology psychologist helped me cope.
I am very thankful for my experience in nursing because I have had the privilege of caring for people who have survived trauma and overcome deficits of all kinds. I have witnessed them overcome seemingly impossible odds, and live joyously when others might despair. It has been done before and can be done again. At the hardest points in this journey I remember some of the strongest patients I have met and it helps carry me through.
Pathology Journey and Treatment:
My doctors originally thought my tumor was a high-grade astrocytoma, most likely glioblastoma (GBM), in part because I have a CDKN2A/B homozygous deletion. However, Next Generation Sequencing (NGS) tests of the tumor did not turn up the genetic mutations that would confirm a diagnosis of GBM. Next, my tumor was sent to the National Institutes of Health for methylation testing. Those tests also did not confirm the GBM diagnosis but instead found evidence of a ZFTA fusion, which is characteristic of a completely different type of glial tumor: an ependymoma. Finally, to confirm the presence and type of the ZFTA fusion, an NGS “fusions only” test was performed. These tests took many months, all the while I was undergoing the “Stupp Protocol” which is the standard of care for all patients newly diagnosed with GBM. This involved 6 weeks of chemoradiation 7/31-9/11, including 30 total rounds of radiation performed in conjunction with the oral chemotherapy temozolomide (Temodar).
In December of 2025 I received my final diagnosis: (grade 3) anaplastic supratentorial ependymoma with ZFTA::RELA fusion. In other words, I have a rare and severe presentation of an ependymoma, and all ependymomas only account for ~1.5% of all primary brain tumors (CERN, pg. 14).
Here in my story is another moment to point out how vital it is to advocate for yourself and your loved-ones when interacting with healthcare. My NGS “fusions only” report was done at an outside institution by a consulting pathologist, who then sent their report to the pathology department where I had my surgery. The consultant’s report was signed on 10/7, but those results were not communicated to me or my neuro oncologist until 12/15. During those two months I knew that the ball had been dropped somewhere, but I didn’t know where or by which institution. So I made myself annoying. I called both pathology departments several times. I talked with the office of Patient Advocacy for each. Everyone kept directing me to somebody else until finally I got the consulting pathologist on the phone and learned what the date of the report was. I was then able to inform my hospital that the document they had named the “final path report” was incomplete. My research does not show that there are any targeted therapies available for my tumor, but if there was, those months could have made a big difference. Everyone deserves an accurate and final diagnosis. If you aren’t confident that you have that, keep asking questions until you do.
It is fairly common for ependymomas to spread within the central nervous system, so soon after I received my preliminary diagnosis I had a lumbar puncture to check my cerebrospinal fluid for malignant cells or inflammation, and spinal MRIs to check for any metastasis. Thankfully, all were clear.
Since I have already had a tumor resection and radiation, my neuro oncology team plans to continue to monitor MRIs of my brain and spine every 3 months. My 6 month scans were in early January, and thankfully, they were clear too!
At this point, we just watch and wait. Unfortunately, there is very little hard data out there about ependymomas, let alone ones with my genetic traits. That is frustrating for a nurse like me who likes data-driven plans, and especially for my husband, who is a data scientist. We do know that the incidence of recurrence is high, so managing scanxiety is also part of our “new normal.”
Now that we have time to take a step back and reassess everything I’m searching for an ependymoma specialist who is in-network with my insurance to do a consultation. I also look forward to putting my nursing background to good use advocating for brain tumor research, which I now know to be severely underfunded. I am excited to participate in activities through Head for the Cure because I enjoy meeting other members of the brain tumor community and because advocacy work is meaningful to me.