It Started with a Headache

My dad never got headaches. He rarely got sick to be honest. He was healthy, he enjoyed running, and he worked his brain daily with his favorite “Games” magazine. When my mom voiced concern about his persistent headache, I urged my dad to go to the ER because he may be showing signs of a stroke or aneurysm. While those two things sounded scary at the time, I would do anything for it to have been a stroke or aneurysm.

For 2 weeks, my dad was in and out of the hospital. Slowly deteriorating headaches getting worse, difficulty walking, nausea increasing, appetite decreasing, and excessive weight loss all getting worse with each passing day. My mom was trying, BEGGING, to get anyone to listen and not just send her home with her dying husband. Regardless of countless blood tests, MRIs, and CT scans my mom was repeatedly told my dad was suffering from a migraine or cluster headaches.

I insisted on flying home to WI to be with my dad. I live in VA and my parents getting sick while I was far away had always been my greatest fear when I chose to move away from home. My dad begged me to stay put and insisted he was okay and just needed time to heal.

Eventually, my mom got my dad an appointment with a neurologist. She loaded my lethargic dad into the van and needed a wheelchair upon arrival to the doctors office because my dad couldn’t walk, he could barely stand or keep his eyes open he was so weak. Aa the neurologist walked in, he took a quick look at my dad, walked out, and came back in with a fear in his eyes, and calmly said to my mom, “You’re husband is very sick.”

Unaware of this recent encounter, I was home in Virginia getting ready to head to New York for a Jonas Brothers concert. They had been my favorite band since I was a teenager, and I was so excited for this Broadway show. My dad knew this, and because he knew how much his little girl loved those “Jonas Boys,” he told me not to miss it to come home and watch him lay around sick. My cellphone rang at 11:30 p.m. and when I saw my mom flash across the screen my heart sank. I knew something was wrong. I answered and in that moment it was as if time stood still. Silence filled the space between me and my mom. Her voice eventually cracked and she said, “I’m sorry, but I’m about to ruin your night” between sobs. Dad had a mass in his brain.

Immediately, I booked a 6 a.m. flight home, the Jonas Brothers concert not even a second thought among the hundreds of thoughts racing through my head.

From the moment I saw my dad in the hospital, I knew things were bad. I spent most of my hours with him, watching as things progressively got worse. He had no interest in food, his appetite nonexistent. He was constantly nauseous, not even the strongest anti-nausea meds would help. Eventually the double vision and noise sensitivity set in. My dad was becoming a shell of a human being. After multiple delays in the brain biopsy my dad was finally wheeled off to surgery to get answers for what exactly this brain mass was.

Another week passed as we waited for the results. My dad continued to decline. He was completely bedridden. My family and I spent countless hours pacing the floors of the ICU. Finally the neurologist came in to give us the results.

Glioblastoma with leptomeningeal metastases.

In that moment it was as if the world stopped spinning. Everything went still. All I could hear was the ringing in my ears. At 28 years old, I was going to lose my dad. My strong, hilarious, sarcastic dad. I never realized how special my relationship was with my dad until I was face to face with this new void that would be in the place of where my heart used to be.

Dad went to hospice shortly after his diagnosis where our days were filled with holding hands, sharing memories, and me joking about how I would sing the entire Jonas Brothers discography to him and he would chuckle. Him and I always shared a passion for music. Quzzing each other on song and artist from a few seconds of the song. Sharing our new finds. We would get lost in the music.

My dad lost his battle to glioblastoma on April 4, 2023. My world will never be the same. Glioblastoma is absolutely terrible. Horrific. The sheer speed at which this disease takes over and leaves nothing but pain and suffering in it’s wake is horrendous. My dad experienced his first symptoms the last week in February and glioblastoma consumed him by April.

As I continue to navigate a life after losing a loved one to glioblastoma, I am continually thinking of ways to give back. Ways to honor my father and the hero he is to me. I set up a fundraiser in his name through NBTS. The outpouring of support was heartwarming. My dad’s story touched so many and we were able to raise over $3,000 dollars for NBTS.

I will live each day as my dad would have wanted. Some days are hard, some are better, and some feel impossibly heavy. My dad always called me, “Little One”. The Jonas Brothers new album released a few days after my dad’s passing. There is a song called, “Little Bird”. The song narrates a Father’s pride and sorrow as he raises his little girl with the knowledge that one day she will grow up, get married, and fly high. This song being so close to “Little One” touched me in a way I cannot even put into words.

This August, I am headed to a Jonas Brothers concert in New York. I will be there knowing my dad is watching over me and smiling down because I finally got to that concert I skipped to spend precious, fleeting time with him. And when they play “Little Bird,” I will soak up each and every word, hearing “Little One” in my mind, and knowing my dad is swaying back and forth with me, letting the music move through us. And if my dad was still here, he would remind me of that time he paid $8.00 for his Jonas Brothers tickets and how his seats were better than mine.

Love you dad. ❤️

-Little One

TAGGED WITH: #GBMDay

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.