When Nicole Puglisi was first diagnosed with DIPG in January 2016, it came as a part of a shocking chain of events. After being involved in a car accident, Nicole received an MRI to examine her injuries. Along with it, doctors also discovered a tumor in her brainstem. Although she had no symptoms at the time, Nicole would later feel its effects almost exactly 2 years later. In the meantime, Nicole pushed to continue her college education with symptoms finally appearing during her final year of school. She recounts noticing facial numbness, excruciating headaches, and vision problems. Afterward, she began to pursue treatments, facing a challenging journey ahead.
Dealing with the Car Accident & College
After sustaining non-life-threatening neck injuries from the car accident, Nicole had to go through therapy as well as seeing a chiropractor. She says once she heard back from the chiropractor about her MRI results being ready, they recommended she bring someone with her which she found odd.
“They were encouraging me to bring somebody with me which I thought was odd because I thought it was just chiropractic results.” She brought her mom with her and went on to say that they went through the injuries in her neck before they talked to her about the mass they found on her brain stem. “It was definitely a shock. My mom grabbed my hand and it was like everything just stopped […] and the room was on fire.”
Nicole was around her Sophomore/Junior year of college when she was involved in the car accident that would later unveil her hidden brain tumor. She took some time off of school to figure out everything that was happening since they didn’t know how long the tumor had been there or the next steps.
“I didn’t know how much time I had.”
She returned to work and school part-time within the year once she found she still had no new growth or symptoms. One of her biggest fears was flunking out so she made it a priority to always let her professors know her current situation. “Every time I would start a new semester, I would reach out to all my professors and let them know “Hey this is what I’m dealing with I just want to give you a heads up in case I need any type of accommodations or I need to miss class, these are the reasons why.”
It wasn’t until almost exactly 2 years after her diagnosis that she started to notice symptoms. However, despite her diagnosis, Nicole was able to graduate undergrad and go on to get her Masters Degree. She is still working towards her doctorate degree so she can become a Clinical Psychologist.
Her Symptoms
Nicole states she started to feel numbness in her face, her smile was incongruent, and she started to have excruciating headaches like her brain was swelling and it was too big for her skull. The headaches then caused nausea and vision problems.
However, since Nicole had about 2 years since she first learned about her tumor, she had time to research and prepare for what she may experience.
“As soon as I started to feel these symptoms I was like, ‘I need to go to the emergency room’.”
This is when they realized there was some small progression and her team encouraged her to go through IVF and start proton radiation and chemotherapy.
Living as an Adult with DIPG
Since DIPG is typically seen in children, Nicole, despite being 22 years old, was originally receiving treatment from pediatric specialists. After observing a growth in her tumor, Nicole’s doctor was hesitant to recommend any form of treatment.
“He basically just told me that I should be happy to have made it this far and kind of shut down the idea of pursuing treatments.”
While Nicole felt overlooked and misunderstood in that situation, she did not give up there. After some searching, she found a new care team who was willing to help.
Nicole explains that being an adult also contributed to her struggles.
“Because they don’t entirely understand it in kids, where they do see it more frequently, as an adult it was even more of a rarity.”
Although it was difficult, advocating for herself paid off in the end because she has made it a long way.
Staying Positive
Throughout her journey, Nicole reflects on ways she has managed to stay positive. While she conveys that her friends and family are an amazing source of support, she also found strength in new places.
“Over the years I’ve connected with hundreds of people all over the world who have also either struggled with DIPG, brain tumors, or any other type of cancer and trying to be a support to them is helpful to me”, she shares.
Talking with others who share a similar experience gives Nicole hope, and she can even aid other warriors along their own journeys.
“I don’t know how much time I have, so I want to make as much of a difference as I can while I’m still here”, she remarks.
Nicole also shares that she’s back to working a lot and that she serves in the mental health community. Today, she enjoys making time for self-care, including visiting the gym. She also reveals that she just got a new dog which keeps her busy!
CRF’s Impact
Nicole is incredibly proud of all the work that the Cristian Rivera Foundation does. She says how it’s amazing how CRF can get so many people involved, “We need someone to shine that light on this community and I feel CRF does a really good job at that.” She says CRF has really impacted her by connecting her with survivors and getting her involved in the work that the community does. “John is always willing to be a pillar of support if needed and that’s really nice to have that support.”
