Tony’s Tumor/ GBM4

Who could have possibly predicted something so small could forever change our entire lives? A cancerous pineal region brain tumor, Grade-4 Glioblastoma Multiforme or GBM, has taken Tony’s job, has altered his vision, and put him through multiple procedures, dangerous surgeries, and long nights in the ICU with possibly more in his future. This unwelcome tumor has taken him away from his family, made him unable to drive or go without help for simple things, and is causing him cognitive delays, confusion, and constant double vision. It’s hard to see Tony like this.

Tony is the most wonderful, kind, funny, thoughtful, and loyal 29-year-old man you will ever meet. He’s an Eagle Scout, an Iraq Veteran, and a Paramedic. He’s been in the service of others his entire life. I’m the lucky one… I married him.

Tony is a veteran and served 7 years in the U.S. Army and completed 2 tours in Iraq as an infantryman. During the last few years of his service he worked as a cold weather mountaineering specialist in Alaska. While in Alaska he was able to climb Mt. McKinley, which is the highest peak in North America. When he came home he wanted to continue serving others and the community so he became a paramedic. He also volunteered for our local area’s Search and Rescue team. Tony loves the outdoors, camping, hiking, and especially rock climbing. My husband is simply amazing. He has spent his entire life in the service of others. He climbs mountains and moves them for the ones he loves.

During the past 2 years, Tony has been completing his Associate’s Degree in Paramedic Medicine at OHSU. He just finished October 2016 and was offered a full-time position with our local ambulance service AMR. This is his dream job and we were so happy.

A few weeks prior to completing school, Tony started getting headaches and sleeping longer than normal. We chalked it up to stress and awkward study angles. Then the headaches started bringing about nausea and vomiting. Tony went to Urgent Care to be check-out but they also chalked it up to stress and told him to hydrate better and follow up with a neurologist if they got worse.

The final straw was when Tony woke up with double vision after a nap, and so we took him to the ER right away. They did a CT of his brain and found the culprit. The Doctor informed us there was a pineal brain tumor that was blocking the flow of cerebral spinal fluid around his brain. He was rushed to the ICU to be treated for hydrocephalus (too much CSF in his head). The headaches resolved with the placement of an external drain. Days later an internal channel was surgically created and the external drain was removed.

The tumor is in the very center of the brain near the pineal gland.  This area affects things like balance, sleep, vision, memory and causes almost constant headaches and nausea. The problem with this type of tumor is where it is situated because it is in the center of the brain. Invasive neurosurgery to treat this type of tumor is extremely difficult and dangerous.

Tony underwent this 11 hour craniotomy to remove the majority of the tumor on November 28th, 2016. The surgeon was unable to remove the entire tumor because it has begun to thread itself into parts of Tony’s brain stem. A large sample of the tumor was sent to the Mayo Clinic for biopsy and diagnosis.

After the surgery Tony’s confusion and memory got worse along with his balance. He was unable to stand, walk, or preform other tasks on his own. Once Tony was medically stable he was sent to the Rehab Institute of Oregon (RIO) for rigorous inpatient physical, speech, and occupational rehab. He spent just over a week in rehab and was sent home to continue therapies as an outpatient on December 12, 2016.

On December 10th Tony and I were given the news we hoped we wouldn’t hear, that the tumor results had come back showing that the tumor was malignant. Our neurosurgeon told us it was a Grade-4 Glioblastoma or GBM. Because of Tony’s young age the surgeon is optimistic about his response to treatments. However the prognosis for this type of cancer because of how fast it can grow and spread is not great. With all the various factors and variables the general prognosis is about 18 months.

With Tony now home we will be continuing speech therapy, physical therapy, and occupational therapy. Tony has completed 6 weeks of simultaneous radiation and chemo. He is now down to 5 chemo days a month with MRIs every 2 months. Tony fights this everyday and never complains and never gives up.

This cancer and all brain tumors are dragons. They come with little warning and quickly steal our loved ones from us. Brain tumors/cancer doesn’t have a prettest robin color, the best odds, and doesn’t get much media coverage, but it’s something that needs to be addressed. The squeaky wheel gets the grease in most cases and we need to squeak for those who can’t.

With love,

Tony & Jessica MacDougall

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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.