Dad vs. misdiagnosis vs. GBM IV

Dad vs. misdiagnosis vs. GBM IV

Stephanie

My Dad was one of those people that everyone liked. People flocked to him for his humor, smile, and kindness. While in the hospital the nurses mocked how he must be famous because of his constant flow of visitors. He had this amazing quality of being able to connect with anyone at any age. Young children through elderly men and women called him their friend. He was active and healthy and impossible to keep still every day of his life up until he woke up on Christmas morning 2014. He told us he felt extremely nauseous, a rarity for him, and as the day progressed he began to behave strangely….frightened from nothing to the point that my mom had to hold his whole body during those episodes and seeing he was things. As day turned to night, he was acting more and more strange and could barely get up. We got him to the ER by ambulance. They did a CT and saw something on the right side of his brain and decided to do an MRI to get a clearer image.

Based on the image, the doctor’s at this hospital expected he had some sort of infection meningitis, encephalitis, west nile, etc. They took blood sample after blood sample and even did a spinal tap on a man who wasn’t lucid enough anymore to remember to stay still. A man who worked in a hospital himself for 25+ years could barely understand what was going on….when just the night before he was joking around with all of his friends at the Christmas Eve church service. He was started on intense anti-viral medications and all kinds of antibiotics because of the certainty of the doctors that this was an infection of some sort. Despite never getting conclusive results, they decided the symptoms were directly in line with HSV Encephalitis and he seemed to be improving some with the help of the anti-viral and anti-seizure medicine he was given (the hallucinations turned out to be seizures).

After about 9 days, we went home. He didn’t get out of bed for 3 days. The home nurse came to take blood samples and clean the picc line he had to have in his chest for a month for follow up treatment and found he had been losing incredible amounts of blood. It was an ulcer from all the stress/medication. Back to the hospital for another week.

Months passed as we tried to cope with his “recovery” from encephalitis. But he wasn’t the same. A man who hadn’t cried in the 46 years my mom knew him, would burst into tears for no particular reason. He was there, but his personality was off. He was also having trouble finding words and still having the small seizures. We called the doctor weekly asking why these things were happening and they blamed it on the anti-seizure medications. They never did a follow up scan to check what was going on inside his brain. When we asked, they said it wasn’t necessary. As Spring came, things got worse fast. He could not even finish a sentence anymore, he lost the ability to read completely, and his balance worsened daily. He went from leaning to the left, to not being able to stand on his own at all without one of us holding him.

Finally, another MRI was ordered and the doctor’s realized “oh, there is still something there….now it’s bigger”. A bomb was dropped on us that day in the doctor’s office. After 6 months of trying to help my Dad cope with the changes from this infection, he has been having a tumor growing inside his brain, untreated for all this time. Trying not to get too upset yet, we went to the neurosurgeon for next steps. After a biopsy, we found out he had the worst of the worst…..Glioblastoma Stage IV. With this fast and vicious cancer, every second counts. And we had been sitting for months. Our treatment options were limited with this type of cancer because so little is known about how to stop it and it is just so fast.

Every single day my Dad lost a piece of who he was. My active, social Dad was now hiding from the world spending his whole day either in bed or sitting on a living room chair. He lost the ability to do anything on his own. We had to help him dress, bathe, walk, everything. All the while, he was aware of his abilities slipping away and it killed us to be out of control. A doctor at Hopkins told us that he could do partial resection surgery prior to my Dad’s radiation and chemo but that we should be prepared for how bad this cancer is. We knew. By the time we got to that appointment my Dad was staring blankly into across the room as my mom, sister and I talked for him to the doctor. Just weeks before this we had no idea my dad was in any danger at all and now we were being told to prepare for the end. Panicked, we hoped this surgery and treatment could buy us a little more time with him. Time that we could prepare ourselves for his passing. He had the surgery on June 15, 2015. After 5 1/2 hours of surgery he woke up in his hospital room. He asked if we could go home, told us he loved us, and hugged me goodnight. That night….his brain swelled and the irritated remaining cancer cells bled. He went into a coma. A month and a half later he woke up just enough to miraculously whisper to us. He was barely awake, couldn’t move, and only ever whispered a few words. But most consistently, he said “I love you”. A few days later, his body began to shut down and he passed away on August 4, 2015.

This cancer is a monster. You watch a loved one lose themselves and there is nothing you can do as it rapidly destroys the person you knew. I had never heard of this cancer until his diagnosis. And I can’t help but think there is a lack of awareness in the medical field in some places too that resulted in his initial misdiagnosis. I hope that awareness will help others to be diagnosed earlier and I hope someday find a cure. No one should have to know that pain.

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