THE DIAGNOSIS

On February 24, 2025, not even a week after Nick’s 24th birthday, he went to the ER with debilitating pressure in his head, dizziness and tunnel vision. Imaging and lab results indicated the need for a higher level of care; therefore, he was transported to CRMC, a level 1 trauma center. Nick was admitted to the Neuro ICU and awaited surgery to remove a large 8cmx5cmx5cm brain tumor. We feel blessed that the surgeon was able to successfully resect the entire tumor, but soon after, we received the devastating news that the tumor was malignant. Nick was diagnosed with a rare aggressive and incurable brain cancer. Pathology results determined the tumor to be a very rare grade 4 pediatric high-grade glioma, H3 and IDH wildtype with NF1 and MMR mutations. These tumor cells are resistant to standard treatment.

ABOUT NICK

Nick is a caring, intelligent and very resilient person. When he was 9 months old, he was diagnosed with Neurofibromatosis (NF1). NF1 is a genetic disorder which disrupts normal cell growth and leads to the development of benign tumors throughout the body, including the brain and spinal cord. While these tumors are typically noncancerous, they can sometimes become malignant. Nick has several benign tumors in his brain and spine that have been closely monitored throughout his life, all of which have remained stable. He consistently demonstrated resilience in handling all the IVs and MRIs, but he also had to cope with the burden of knowing there was a risk of them growing, which is a lot for someone so young to carry with them. Despite this challenge, his mental strength remained unwavering. Nicholas graduated high school as Valedictorian and continued to college at CSU Fresno where he earned a bachelor's degree in history. After graduating, he accepted a position to work as an insurance broker. Recently, Nick decided to pursue his passion for helping others by enrolling in the EMT program at Fresno City College, taking the first step toward a career in emergency medical care.

WHAT MAKES THIS TUMOR RARE

Nick has several stable benign tumors related to NF, which is why he regularly had MRIs. However, this brain tumor was new and different from the rest which was not on his scans 18 months ago.

Due to the unique pathology findings, Nick underwent further genetic testing to guide treatment for this specific tumor type. Along with his known NF1 diagnosis, he was also found to have Lynch Syndrome, a condition that increases the risk of gastrointestinal cancers. His mutation is in the MSH2 gene, the most aggressive subtype, often linked to an earlier onset and a broader range of cancers. This rare combination of mismatch repair and NF1 mutations add complexity to his case, so his care team has been expanded with more specialists.

THE CURRENT TREATMENT

Nick is determined to fight this and will do everything it takes to decrease the opportunity for the tumor to return. He’s nearly finished with his 6 weeks of radiation - just three treatments to go. He recently started immunotherapy, receiving infusions every three weeks for at least six months. Mid-June Nick has his first MRI post-treatment scan and will meet his UCSF care team providers in person to discuss results and next steps.

NEXT UP

As Nick finishes his radiation treatment and continues immunotherapy, his tumor tissue is now on its way to the SickKids Research Institute in Toronto, Canada. The specialists there are leaders in MMR research and will help guide the next steps in his treatment plan. We’re deeply thankful that both the UCSF and SickKids teams, renowned for their expertise in NF and MMR, are working together to support Nick’s care.

ACCESSING ADDITIONAL THERAPIES

We’ve been searching tirelessly for any additional treatment options that could give Nick a chance of a future he is so deserving of. Clinical trials are on the table, and his doctor is exploring what options may be available to Nick. There are many promising therapies and treatments, backed by research, though many come with challenges: they may not be FDA-approved, are offered out of the country, involve repurposed medications not covered by insurance, and/or require travel, all of which can be very costly; especially, the out of country treatments which could exceed $100,000. Adding adjuvant therapies and treatments alongside standard treatments can enhance outcomes.

HOW YOUR SUPPORT WILL HELP

We’re preparing now for when standard treatments fall short, and more is needed. We believe that with enough support, Nick will be able to access treatments that may give him more time, more hope, and the chance to fulfill his purpose in life.

We ask for your continued prayers, shares, and donations. Every contribution, no matter the size, makes a significant impact. If you’re unable to give, simply sharing this message means the world to us.

Your generosity will provide crucial assistance by funding:

• Travel cost for out-of-town appointments and treatments

• Therapies, consultations, labs, medications and testing not covered

by insurance

• Supporting my sister and brother-in-law in their commitment to

ensuring Nick receives the best care possible

My family has a long road ahead of them that will likely be filled with challenges, uncertainty, and difficult decisions, but they are moving forward with hope and determination.

A NOTE FROM NICHOLAS

Hi everyone,

The past few months have been incredibly difficult for me and my entire family. Being diagnosed with aggressive brain cancer in my 20s is something I never imagined. I was nearly halfway through EMT school, with plans to graduate this May, and start a career helping others in my community. Instead, I’ve had to put everything on hold and make significant changes in my life.

The emotional weight of this has been heavy and despite the poor prognosis, I am determined to fight this using any means possible. Right now, I am being treated with radiation and immunotherapy, but I’ve also been learning about other treatments that show real promise. I’m especially hopeful about some international and experimental therapies that could give me a better chance to live a longer life.

Thank you for your support. Your thoughtfulness means the world to me.

With gratitude,

Nick Miskulin