Jamie's Story: My Dad, My Hero, My Best Friend...

Jamie's Story: My Dad, My Hero, My Best Friend...

February 2008: My Dad was having some problems but he would not go to the hospital. My Mom had to call his best friend Terry over. When Terry came in, Dad knew why he was there. He went to the hospital! Dad saw a neurologist in March, who ordered a CT scan, then another CT scan with contrast. Following that, he was admitted to the hospital for more testing like MRI, bloodwork, etc.

A mass was found on the left side of his brain and surgery was the only option. The tumour was removed in late April and Dad was released back home, a few days before my birthday. Before he left the hospital that day, he gave me money to go buy myself a cross on a chain. He knew I had been wanting one for a while and he could not go get it himself. My Dad always thought of others first. 

A few weeks later the pathology report came in, with the results: Glioblastoma Multiforme
Week 2 of chemo from Dads notes: "The second week of chemo and radiation are complete and I am still feeling pretty good with no ill side effects. I'm getting out walking as much as I can, although the black flies are giving me a hard time. I could be involved in a clinical trial. A tissue sample was sent away to confirm the type of cancer and test for a certain type of gene. I did have the right gene to qualify for the clinical trial. This may affect the dosage of chemo during the last 6 months of treatment."
He was accepted in a clinical trial in Saint John, NB, but was also looking at a trial at the Preston Robert Tisch Brain Tumor Center at Duke University in North Carolina where his brother Randy lives. After his visit with the doctors and medical team at Duke, my Dad, Mom, and Uncle had 15 minutes to decide whether he was going to do the trial or not. They decided to go for it. The trial involved a vaccine which showed promise to give patients more time. 
August 2008: Chemotherapy. He had 5 days of chemo the first of every 28 days for 6-12 months. He didn't do well this time around. The dose was almost three times than the previous round. After 10 days he got his first dose of vaccine (13 needles), then the second two weeks later and the third two weeks after that. Then it was every 28 days for the vaccine for as long as the tumour did not grow. 
This study was called "Zap-It": Zenepax Activated Peptide Immunotherapy. 
Feb 2009: Vaccine #8. There had seemed to be some growth and enhancement around the residual tumour, so more testing was quickly needed. He needed a PET scan and the fastest way was to travel to Toronto, have the scan there, and then head to North Carolina for his regular scheduled appointment to review all the results. 
That was quite the time, as crossing the US border alarms were going off for radiation. Guards came out and started checking each car in the lineup. They got to Dad's car and he said, "I think you are looking for me". They were very pleasant to deal with once Dad explained the situation, and so he was released quickly.
The MRI showed significant shrinkage of the tumour. The growth was just swelling. It was good news, and Dad continued on with the trial.
Dad had been able to get out walking, running and bicycling. It was great that he was able to be active.
July 2009: Vaccine #14. Dr. Reardon read the results, no abnormalities in the brain! It looked like a normal brain. Dad joked and said he found that hard to believe!
March 2010: Vaccine #22. From Dads blog: "They told me when my medical troubles began, that I had a 10-15% chance of living two years. Well, two years went by, and the last 3 or 4 reports have shown no sign of the tumour. Needless to say we are pretty happy with the choice to participate in the clinical trial. We owe a lot of people our sincere thanks for the support we have received".
Dad was a very active man, he was the healthiest he ever was in his life when he got this awful disease. In August 2010, my Dad and two brothers traveled to Newfoundland to climb Gros Morne Mountain. He had done this before he was sick and he did it again. 
October 2010: Vaccine #30 and Mom and Dad reached their 30th Anniversary!
February 2011: The MRI was good this month. No sign of recurrence! Dad got a MRI every other month for his scheduled appointments at Duke. Because of the cost, $5000 for one MRI in the USA, Dad was able to get his MRI's done at home, have a CD ready with the results within minutes to take with him. February 23, 2011 marked 3 years since this awful disease changed his life. 
May 2011: Dad was having some side effects from his anti-seizure medication, so he was switched to another. However, the side effects from the new medication were even worse, and he had to go back to the previous medication.
September 2011: Dad still had not gotten any better. The seizures got progressively worse over time and he had to see another doctor. He had several doctors working on the problems both at home and in North Carolina.
October 2011: Dad was too sick to travel to his appointment in North Carolina. After numerous trips to the hospital and not finding out what was wrong, he finally got a call from his Doctor. Dad had mononucleosis! Mono can be very dangerous in people with suppressed immune systems.
November 2011: Dad had to miss another vaccine at Duke. He was battling Mono, and was very weak and fatigued. We started to wonder if Mono was going to take my Dad and not the cancer. 
My Dad was a pilot. He flew for fun. He flew a Cessna 172 for many years and was building a plane. He had the body and wings finished. He was over halfway. Then my Dad's dream came to a screeching halt. Today, there is still a half-built plane sitting there. My Dads dream. I knew the disease was taking him, but what hurt me the most, was to know that he would not be able to finish his dream. 
December 2011: Dad was finally able to make his trip to Duke. He was still very sick, and ended up with a cold just before leaving. Dad was unsure if he would be able to continue with the clinical trial at Duke. 
February 2012: Dad was able to make the trip to Duke. The MRI showed no signs of recurrence. February 23, 2012 marked 4 years of survival. Mono was still giving him trouble, but he showed signs of improvements.
June 2012: Almost four and a half years since his first symptoms occurred. We got the news we had not wanted to hear. Dad's cancer had returned. Because of this, he was off the trial at Duke. The doctors said the best option was to remove what they could of this recurrence. 
July 2012: Dad had surgery. They removed the tumour and got it all. He was doing well and back home after a few days. Dad went back on chemo, Temodar, which gave him troubles when he first did it. He was taking a lower dosage but had to take it every single day. 
At this time, Dad decided to do some renovations to the house. He knew his battle was going to come to an end. Not knowing when, he wanted my Mom to live in the house without having to worry in the future. 
12/12/12: A day that we will never forget. Dad had his MRI, my brother and his girlfriend had their first baby girl, my other brother got married in Las Vegas, I was at another hospital getting an ultrasound to find out the sex of my baby (another girl), and Mom was sitting in a chair in the hospital knitting while not knowing who to think about first. Dad's MRI looked good, no sign of an growth. It was a good week after finding out his results. 
February 23, 2013: Dad marked 5 years of survival.
While Dad was sick, he did some running marathons as well. He went to Duke for the 'Angels Among Us' 5km run each year. This year he went, but could not do the 5km, but was still there. 
Summer 2013: Dad's cancer returned. He had 4 new tumours. We decided not to operate this time around, as they would only be able to take one tumour and the rest would just continue to grow. Quality of Life was most important to him at this time, and recovering from an operation would be too much, and not solve the problem. Dad was still taking his chemo daily. He was still in great spirits. 
The last few days of Dad's life, we had all of our family by our side. His parents, brothers, sister, children, grandchildren, cousins, and many other family and friends gathered to see him. 
September 1, 2013: Dad lost his battle with GBM, his family by his side. I remember this day, it's etched into my brain. We decided Dad was not going to suffer his way out. We were giving him morphine every 15 minutes. He needed to be comfortable. We knew that Dad was taking his last breaths. Mom talked him through it, my brother and I held on to him. I was starting to whimper. I heard my family coming to see what was the matter and before any one of them crossed that doorway, Dad took his last breath. He was gone. My brother got up and walked out, I got up and walked out. Neither of us spoke a word. I walked outside and took a deep breath. It was a breath of relief. Not a relief he was gone, it was a relief knowing that Dad had no more pain. My mom stepped outside, and the three of us were standing there, with fog all around, when a seagull flew down out of the fog in front of us and then back up. Mom said "he made it, he made it, that's him, that's our sign that he made it". It was calm, after it had stormed all night long.
My Dad, My Hero, My Best Friend. He was gone. This deadly disease took him! 
We need a cure. We need it now. 
Thank you Cheryl, for sharing your Dad's story to raise awareness of brain tumours. 

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