19-Year-Old’s Noticed Her Pupil Changed In Size. It Turned Out To Be a Rare Brain Tumor. Hope As The Trial Drugs She’s Taking Have Been Working After One Year

“We [Kerr and her family] didn’t think much of it at first until my symptoms worsened. After a second optician’s visit a few weeks later, they referred us to the hospital, where a CT scan found a shadow in my brain,” she told PA Real Life, according to the Independent.

“An urgent MRI then revealed what they thought was a schwannoma tumor on my third ocular nerve. This type of tumour is rare, but having it located on the third ocular nerve sheath is even more unusual.”

Kerr explained further, ” At first, they thought it was a low-grade tumour and had been growing slowly for years, but as my symptoms were changing every few weeks and getting worse, we insisted on getting scanned again sooner.”

She ultimately chose to get the tumor surgically remove, and in December 2023, surgeons were able to take out 90 percent of the mass.

However, a biopsy revealed she had an incredibly rare type of brain cancer.

“They weren’t sure if it was an epithelioid glioblastoma (e-GBM) or an anaplastic pleomorphic xanthoastrocytoma (APXA), but they knew it was serious. Although 90% of it had been removed, the remainder – a crystallized mass – was wrapped around my carotid artery, the main blood supply to my brain. It was devastating, but my mom stayed calm and told me, ‘It’s just a number’. My grandparents had outlived grim prognoses before so we refused to give up.”

Since then, she has undergone six weeks of chemotherapy and radiotherapy, treatments she started in January 2024. However, by March 2024, treatment was found unsuccessful and the tumor was finally confirmed to be a pleomorphic xanthoastrocytoma (PXA), an extremely rare type of astrocytoma, a primary central nervous system (CNS) tumor, meaning it begins in the brain or spinal chord.

According to the National Cancer Institute, “PXAs typically have genetic alterations, such as the BRAFV600E mutation, that affect a series of chemical reactions known as the MAPK signaling pathway. These genetic alterations can ultimately help the tumor cells grow and survive. While these genetic changes help form and maintain the tumor, they may also be targeted for treatment.”

Additionally, the NCI explains, “PXAs usually occur in one of the four lobes of the brain. The temporal lobe is the most common location. Rarely, PXAs form in the cerebellum, brainstem, and spinal cord. They are usually located close to the surface of the brain tissue. Scientists believe these tumors arise from cells that grow into glial and nerve cells.

“PXAs can look a variety of ways under the microscope and can be challenging to diagnose, as they share characteristics with other primary brain tumors. An expert neuropathologist should confirm this diagnosis. Molecular testing will often reveal a BRAF gene change in these tumors.”

Due to the way the tumor was spreading and branching, Kerr was put on clinical trial drugs Dabrafenib [brand name: Tafinlar ] and Trametinib [brand name: Mekinist], which had helped decreased the tumor’s size.

Since then, Kerr and her loved ones have been working to raise funds to try an expensive trial drug called DCVax-L, which is a a personalized immunotherapy used to treat glioblastoma [type of agressive brain cancer] and costs more than $250,000.

Kerr had remained grateful for all the support she’s received and she’s already raised more than $100,00 on a crowdfunding page that was set up for her.

Aside from raising treatment funds, Kerr also strives to raise awareness for brain tumors.

She offered a May 2025 update on her JustGiving page, writing, “I got the best news as the trial drugs are still working after a year. Honestly I have no words. I am also so proud to be the ambassador for the Scotland Hat Walk which was an amazing experience to see all the fabulous hats, milliners and supporters.

“It offers me so much hope that by raising awareness of Brain Tumour Research, we will find a way to fight against brain tumours so that people of the future don’t have to go through what I am. I just love my family to bits for their support.”

Kerr’s JustGiving page also reads, “DCVLax, a beacon of hope. This breakthrough development drug has been in clinical trials since 2016 and creates a personalized antibody against the tumour. This offers a form of immunotherapy that is able to penetrate through the Blood Brain Barrier and has the potential to combat Joscelyne’s tumour.

SurvivorNet’s Guide To Clinical Trials: What Are They And Are They Right for You?

“It is her hope! With her infectious positive spirit, Joscelyne’s life motto has always been ‘Go Big or Go Home,’ epitomizing her determination to secure the funds needed for her treatment. Your contribution, no matter the size, fuels Joscelyne’s fight, enabling her to pursue her dreams and perhaps inspire others along the way.”

All About Brain Tumors

Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO). In 2025, the ASCO estimated that 24,820 adults (14,040 men and 10,780 women) in the United States would be diagnosed with primary cancerous tumors of the brain and spinal cord.

The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the body’s nervous system. The normal function of the brain and spinal cord can become difficult if there’s a tumor putting pressure on or spreading into normal tissue close by.

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There are many different types of brain and spinal cord tumors and some of which are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, however, even these types of tumors can lead to serious problems.

The specific type of brain tumor Mulheron was diagnosed with is, according to the Boston Children’s Hospital, a “low-grade tumor of mixed cell type,” which is “very rare and contains properties of both glial cells — responsible for providing the structural support of the central nervous system, and neuronal cells — the functioning component of the central nervous system.”

“Gangliogliomas usually occur in the part of the brain that controls motor, sensory, and higher mental function, called the cerebrum, but can occur in any part of the brain or spinal cord,” the hospital explains.

“In rare cases, ganglioglioma may transform into a higher grade, more malignant tumor. Children with certain genetic syndromes, including neurofibromatosis 1 and tuberous sclerosis, are at higher risk of developing glial tumors, including gangliogliomas; however, most of these tumors develop spontaneously.”

Symptoms of gangliogliomas often grow slow and children have symptoms for months before being diagnosed.

Although seizures are usually the first symptom, other symptoms may be headaches, nausea, fatigue, weakness on one side of the body.

Meanwhile, symptoms of brain tumors, as a whole, are usually caused by increased pressure in the skull. This pressure can stem from tumor growth, swelling in the brain, or blockage of cerebrospinal fluid (CSF), the American Cancer Society explains.

General symptoms may include:

• Headache
• Nausea
• Vomiting
• Blurred vision
• Balance problems
• Personality or behavior changes
• Seizures
• Drowsiness or even coma

Additionally, MD Anderson Cancer Center notes that changes in the ability to smell can also be a sign of brain tumors, and, more specifically, “strange smells” can be a symptom of seizures, which can result from brain tumors.

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It’s important to note that these symptoms are not exclusive to brain tumors. Still, you should always speak with your doctor if you’re experiencing any health problems.

Meanwhile, treatment options for brain cancer depend on a variety of factors, including the size and type of the tumor as well as the grade of the tumor.

Surgery, radiation, and chemotherapy are options doctors use to treat brain tumors. Cancer warriors are encouraged to talk to their doctor about their situation and the best treatment options.

Types of Cancerous and Non-Cancerous Brain Tumors

A brain tumor can affect you differently depending on its location and if it is cancerous. Some brain tumors are non-cancerous (or benign). According to the National Cancer Institute, some examples of these types of brain tumors include:

• Chordomas are primarily benign and slow-growing and are often found near the tailbone or where the spine meets the skull.
• Craniopharyngiomas are rare, slow-growing tumors that don’t spread to other parts of the brain or body. They form near the pituitary gland near the base of the brain.
• Gangliocytomas are rare tumors of the central nervous system that tend to form on the temporal lobe (the left or right side of the brain).
• Glomus jugulare are rare and slow-growing tumors.
• Meningiomas are rare brain tumors that usually form on the outer layer of tissue that covers the brain (dura mater).
• Pineocytomas are rare and slow-growing tumors located in the pineal gland near the middle of the brain.
• Pituitary adenomas are slow-growing brain tumors of the anterior pituitary located in the lower part of the brain.
• Schwannomas are rare tumors that grow on the cells that protect nerve cells. They are called Schwann cells.
• Acoustic neuromas (vestibular schwannoma) are slow-growing tumors that develop from the nerves that help balance and hearing.

Other brain tumors are malignant or cancerous. These kinds of tumors include:

• Gliomas are the most common form of cancerous and aggressive primary brain tumors.
• Astrocytoma (glioma) forms in astrocytes (star-shaped cells). These tumors are classified into four grades depending on how aggressive or fast they grow and impact brain tissue.
• Ependymomas are tumors classified into three grades depending on how aggressive or fast they grow.
• Oligodendroglioma tumors are classified into grades depending on their growth speed. Grade 2 oligodendroglioma tumors are slow-growing and can invade nearby tissue, but they may not present symptoms for many years before detection. Meanwhile, grade 3 oligodendroglioma tumors proliferate.
• Medulloblastoma tumors are classified into four different grades depending on their aggressive nature or how quickly they grow.
• Glioblastoma, which is considered a central nervous system (CNS) tumor, is the most common and aggressive brain tumor in adults.

Understanding Gliomas

There are various types of brain cancers and tumors that someone may be diagnosed with, so it’s important to understand that a glioma is a tumor originating in the central nervous system (CNS), specifically in the brain or spinal cord. A glioma originates in glial cells. Glial cells are supportive cells in the brain that protect and maintain the neurons. These types of tumors can either be benign (non-cancerous) or malignant (cancerous).

“Glioma is a broad term that refers to a whole range of different types of primary brain tumors,” Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, tells SurvivorNet.

“They’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body,” Dr. Miller continued.

Glioblastoma (GBM) is the most aggressive and lethal form of primary brain tumor. Classified as a Grade 4 glioma by the World Health Organization (WHO), glioblastoma presents significant challenges for treatment due to its highly invasive nature, rapid growth, and resistance to most conventional therapies.

WATCH: Understanding Gliomas

According to the National Cancer Institute, the average survival rate is 15 months with treatment and less than six if left untreated. While there is a five-year survival rate of averaging 6 percent, those individuals will never be cancer-free. They must continue receiving radiation and chemotherapy for the rest of their lives.

Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.

WATCH: Clinical Trials can be Life-Saving

Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important.

Treatment Options for Gliomas

“The first step is always the neurosurgery. How much can you take out? Is it safe to do surgery? Do you have to rely on a biopsy? Can you even do a biopsy?” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.

WATCH: Glioma Treatment Options

The main treatment options are:

• Observation—Some benign, small, and without symptoms of gliomas or tumors located in inoperable locations can be recommended for observation.
• Surgery is often the first-line treatment for gliomas, with the goal of achieving maximal safe resection, where the largest amount of tumor is removed without causing significant neurologic deficits. For low-grade gliomas, surgery alone can sometimes be curative.

After surgery, pathologists examine the tumor tissue to understand its features and molecular makeup. This added step helps doctors outline an appropriate treatment.

“We go through a very elaborate process of diagnostics, which includes looking at it under the microscope through our pathology team,” Dr. Friedman explained to SurvivorNet.

WATCH: The Role of Surgery in Treating Gliomas

Radiation and chemotherapy are often needed after surgery because removing the tumor completely is usually not possible due to the tumor’s ability to spread into surrounding brain tissue.

• Radiation therapy uses high–energy X–rays to target and kill tumor cells. It is often used after surgery to target residual tumor cells.
• Chemotherapy – These medications kill or slow the growth of cancer cells. Chemotherapy can be used alongside radiation or following radiation and is often used in higher-grade tumors.

The Food and Drug Administration (FDA) has approved some drug treatments, including temozolomide (Temodar), to help patients with this aggressive disease. Temozolomide is a chemotherapy drug patients can take after surgery and radiation therapy.

• Targeted therapy and immunotherapy are newer treatments designed to target specific genetic mutations in the tumor or to stimulate the immune system to fight the cancer. Their role in the treatment of gliomas is continuing to evolve.

Other FDA-approved drugs for treating glioblastoma include lomustine (Gleostine), intravenous carmustine (Bicnu), carmustine wafer implants, and Avastin (bevacizumab).

Avastin is a targeted drug therapy that blocks glioblastoma cells from requesting new blood vessels that feed and allow the tumor to grow.

The FDA approved Vorasidenib, an IDH inhibitor. It works by blocking the mutated enzyme, slowing tumor growth, and extending the time before disease progression. IDH mutant gliomas tend to grow more slowly and have a better prognosis than IDH wild-type gliomas.

Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, tells SurvivorNet that Vorasidenib is a “huge breakthrough for people with IDH mutant tumors.”

WATCH: Vorasidenib for IDH Mutant Gliomas

“What I tell my patients is that we have these effective treatments, but what they do is they delay the time to when this tumor comes back. Only in exceptional circumstances would we ever talk about getting rid of one of these cancers a few,” Dr. Daniel Wahl, professor of radiation and oncology at the University of Michigan, tells SurvivorNet.

Ongoing Research Offers Hope

Fortunately, research is ongoing to improve the prognosis for people battling glioblastoma. One area of promise is tumor-treating fields, which can help extend patients’ lives by two years on average, giving them hope.

Optune, the brand name for the tumor-treating field delivery device, was launched in 2011 and approved by the FDA in 2015. It is a wearable and portable device for glioblastoma treatment for adult patients aged 22 years or older.

“There’s been a very exciting development of tumor treating fields, which are electrical fields that have been applied to the brain,” Dr. Suriya Jeyapalan, a neurologist at Tufts Medical Center, previously told Survivor Net.

TTFields use low-intensity electric fields to disrupt the cell division process, making it harder for cancerous cells to multiply.

WATCH: Using electric sources to improve glioblastoma treatment.

Despite Optune’s hope, not all cancer experts agree with its approach, including Dr. Friedman.

“Although the National Comprehensive Cancer Network (NCCN) recognizes Optune within its guidelines as a therapy for glioblastoma, many people don’t believe it adds value. At Duke, for example, we don’t consider it a mainstay of therapy,” Dr. Friedman said.

Who Can Sign Up for Clinical Trials?

If you’re interested in taking part in a clinical trial, the first thing to do is to speak to your doctor about the possibility of a trial. Blindly searching trials on the internet might not be the best advice available; using either the government’s clinical trials database or SurvivorNet’s resources specifically for cancer patients is your best option.

Dr. Nina Shah says if you’re interested in a new treatment, don’t be afraid to ask questions.

However, just because you’re willing to take part in a clinical trial doesn’t necessarily mean you will be able to join. These trials have specific criteria that patients need to meet in order to take part. At the end of the day, even though these trials can have incredible results and provide you with access to cutting-edge therapies, these are controlled experiments.

For each trial, there will be certain inclusion and exclusion criteria.

Sometimes, patients may be excluded from certain trials if their cancer has spread to their brain. If the metastases aren’t under control, the patient may be unable to participate because researchers are concerned that they won’t be able to complete the whole study.

Why Do People Get Excluded From Clinical Trials?

There are options for people who may not be eligible for the clinical trials they wish to participate in, but still want to try the therapies. A few years ago, the U.S. passed something called “Right to Try” legislation. This gives terminally ill people access to highly experimental drugs that are in “phase one” of the clinical trial process.

Your doctor may also request access to a single patient IND (investigational new drug) on your behalf, which can also give access to treatments that the FDA has not yet approved.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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