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READ MOREPublished on July 8, 2024 in Share Your Story
Guest Author: Leo Hojnowski in Maryland
My name is Leo Hojnowski, and I was diagnosed with a rare, aggressive form of brain cancer in 2020. When I was diagnosed, I didn’t have any traditional symptoms of a brain tumor. I wasn’t having seizures. I wasn’t dizzy. I wasn’t fatigued. I wasn’t nauseous in any way.
I went to my primary care doctor to get help with migraines that I’ve had since I was a teenager. My primary care doctor recommended that I go see a specialist. I went to the specialist, and she gave me some options. Before we did anything, she wanted me to get a CT Scan. After my scan, she called to tell me to get an MRI.
I called for an update on the results to learn that she had already scheduled an appointment for me to see someone who specializes in masses of the brain. At that appointment, my wife Shannon and I learned I had a brain tumor, and it was likely inoperable.
If it weren’t for my wife, who I have been married to for 30 years, I wouldn’t be here. I would have given up after the second doctor. She continued to push to ensure I got the best possible treatment I could receive. As Shannon said, “We initially heard some discouraging words, but they ultimately led us to the right path.”
When diagnosed with brain cancer, or any type of cancer, it’s important to find the best possible hospital and the best possible team in order to have the best possible outcome.
We met with Dr. Woodworth at the University of Maryland, who provided information with us that, quite frankly, gave us hope. We left that appointment feeling better about the whole situation than when we got there. It makes all the difference to find the right team.
After successful surgery, I was introduced to the rest of my team — a team that would be very important for me being able to be here today — before starting proton therapy instead of traditional radiation.
Martha Francis, a nurse practitioner at the University of Maryland, took on the role of my patient navigator. She was there not just for me but for my wife anytime she had a question or concern. I think the importance of a role like that can’t be understated because it’s not just about your physical health, it’s also about your mental health. It’s about your family core and how they handle the entire situation. I’m so happy we met somebody who understood that and was there for us.
I have two children — my daughter Kaitlyn and my son Leo. One of the things that is very important about surviving brain cancer and really thriving while you’re going through it is to work to stay positive, and my kids have certainly helped me with that in a lot of different ways.
My daughter and I would text every single day while I was going through treatment about what each of us was grateful for. It could be anything small like, “Today is Day 26 of my therapy, and I’m going to push through it.” Or it could be something big like, “We’re going on a cruise after I get well.” Having your loved ones around you and gratitude is such an important part of the journey and staying as mentally and physically fit as you can.
My son Leo shared with me about the timing of my diagnosis: “When my dad got his diagnosis, we had just finished applying to colleges together for undergrad. It was whiplash to finish this huge achievement of applying to about 30 colleges together and then get that news. Sitting in that uncertainty of college decision but also finances and how I’m going to pay for whatever college I get into. It was pretty overwhelming at the time.”
For me, one of the hardest things wasn’t getting the disease; it was that my entire life had changed. My perspective on life changed, but also the value of myself changed drastically. I don’t think a lot of people take that into consideration. When you’re the person who makes the majority of the income and you work 60-70 hours a week and all of a sudden you can’t do that, it’s a difficult transition. Having somebody to speak with about that is very important because it’s not always about the disease but how the disease impacts you.
I’m living proof that people can live through it — not only live through it but live well through it — knowing that it is a ticking clock. You’re basically fighting the clock until there is another treatment or another way to treat this disease because it does come back. It’s not a matter of if. It’s a matter of when, so you try to do everything you can to prevent it from coming back.
I have been given the gift of time, which has allowed me to fulfill promises I made to my loved ones. I danced with my beautiful daughter at her wedding in July 2023, I saw the Northern Lights with my son, and I celebrated three more anniversaries with my wife. Amidst the joy of these milestones, the shadow of my health battle looms large, adding an extra layer of complexity to an already emotional period.
Shannon had met Bridget B. shortly after I was diagnosed, and the two talked a lot in the days and weeks that followed. Bridget was a caregiver for her late husband after he was diagnosed with glioblastoma. We were introduced to the National Brain Tumor Society when Bridget virtually walked in the Race for Hope DC in honor of Leo.
In 2023, we attended the walk and run in D.C., which was absolutely amazing. Shannon described it as an overwhelming feeling of community and connection. It gave us a chance to channel our energy into something positive. We got to see our friends, and I returned the favor and walked in honor of Bridget’s late husband.
Fundraising for the National Brain Tumor Society is extremely important because this disease affects people on different levels — not just the patient but also family members.
On the sixth annual Glioblastoma Awareness Day, July 17, 2024, we will gather to amplify the voices, experiences, and urgent needs of everyone living with glioblastoma (GBM), the most common, complex, treatment-resistant, and deadliest type of brain cancer.
“For me, Glioblastoma Awareness Day means hope,” Leo said. “It gives me the opportunity to share my story with others and raise awareness about glioblastoma. It’s one of the most difficult types of brain cancer to treat. There is a true need for additional funding in that field.”
For everyone with a glioblastoma diagnosis, it’s time for a better chance.
TAGGED WITH: brain cancer, brain tumor
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.
