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J. Steven Scott (Scotty)
J. Steven Scott Memorial
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Written from the eyes of his loving daughter, Kristen Scott Verna:
Joseph Steven Scott, known as Scotty by friends, Pop-Pop by his grand kids and Dad to my brothers and I. Dad was diagnosed with stage 4 lung cancer at just the young age of 56. He was such a healthy and strong man with no real health concerns other than high blood pressure and cholesterol which was definitely related to the food choices dad would make as he had a strong relationship with really good tasting food and a romance with anything sweet.
It was the summer of 2014 while on vacation at his second home in Bath, North Carolina with his family that was the beginning of what would be the end of his days. Having water skied his whole life and teaching my brothers and I during our younger years, he felt it was his duty to pass the super skills of dare deviling off to his grand kids He spent a few hours on the water that hot day in July with a big grin hot dogging while my husband drove the boat. My kids and I were laughing as they watched their Pop-Pop, the man who could conquer all and do no wrong rip around like he was in his 20's. To Dad age was only a number and he was always a big kid at heart. Later that evening, he complained of pain in his hips. My mother likely called him a Jackass and laughed at him saying that's what he got for showing off. Mom and dad had a relationship full of love for one another, but sarcastic humor was definitely the soul of their marriage. I’m certain it’s where my brothers and I get it from. Dad spent the next several weeks complaining of that pain and visited the chiropractor a few times which gave no relief. He was sent to an orthopedic doctor who performed an MRI which he expected was a cracked hip or similar, only he learned it wasn’t anything close, but he had several tumors growing in his groin. The following few weeks Dad had biopsies done and he got the call from his family doctor that no person in this life ever wants to hear. It was cancer. Later on we learned it was lung cancer which he had for a while but just didn't know it. He hadn’t had any other symptoms or reason to think something wasn’t right. At the time it had already spread through his body, mostly in his hips and spine which was the cause of all the discomfort. His cancer was Non-Small Cell which is not caused by smoking or anything he could've prevented. There was no cure for his cancer, but only treatment to help prolong his lifespan. Mom and Dad kept this devastating news to themselves for a few weeks giving themselves time to cope and plan ahead. They scheduled an appointment with an oncologist at Chester County Hospital which would later be a very bad experience.
October 24, 2014. I remember this day like it was yesterday. I was at the Downingtown West vs Downingtown East playoff football game, a Friday night game under the lights. The stadium was packed with fans in blue and gold. My husband and I were watching our daughter perform sideline routines with her cheerleading squad. Sadly, we lost that game and sadly it would be one of the worst nights of my life. As the game came to end and the crowds dispersed we fought the people to get back to our car. That's when I got the call. I shed all the tears I had in me and then some the whole way home full of feelings of sadness and anger. I went through all the emotions one can expect after receiving devastating news such as your father has cancer and it’s not curable. I cried myself to sleep that night. That next morning, I woke up on a mission. I made a promise to God and myself to do everything in my power to help my dad fight his cancer and be his best friend along the way. I promised to be my dad’s advocate, my mom’s strength and my family’s chief commander to guide our army to victory against our enemy. Our enemy was something you couldn’t see, touch or hear, but it was there, and boy was it mean. But it wouldn’t stop us from fighting with full suits of armor.
When Dad and I finally had an opportunity to address the ugly elephant, he said he was going to beat the odds and prove all the doctors wrong. Statistically, he should've had less than 6 months. Proving the doctors wrong and beating odds was exactly what he did, with his army right behind him every step of the way.
His first oncologist appointment was in early November, 2014. I insisted to my parents that I was going to attend to be the moral support my dad and mom both needed at that time. The doctor's prognosis was less than hopeful, and his doctor felt starting traditional IV chemo was his only option. He didn’t give much hope or have much to say other than Dad was certain to die of cancer and sooner than later. We had heard of new treatment options which had success outside the traditional chemo drip. One of those was a daily chemo pill which could be taken orally. It was called Tarceva. I asked the oncologist at that first appointment about the Tarceva and his arrogant reply to me was “the chance of him qualifying for that medication was slim to none as he didn't meet the 'standard criteria' for that medication”. Standard criteria meaning Dad wasn’t a woman. It is mostly women who qualify for the Tarceva and of the few men that did qualify, they were mostly of Asian descent. Being as dad was neither, it’s understandable why the doctor felt he wouldn’t qualify but he also didn’t give any hope which didn’t settle well with me. We insisted that the blood be drawn regardless. In order to qualify for oral chemo pills, one’s blood must have a certain genetic mutation. We left that oncologist’s office and I advised my parents strongly against starting the traditional chemo and wanted to wait to see what the test results would show. I scheduled an appointment at the University of Penn for a second opinion. A friend of mine, Kelly Scott was an oncology nurse at the Abramson Cancer Center at the University of Penn Hospital at that time and she was able to put me in touch with the right people to get Dad seen by one of the top oncologists right away. That is when the real journey began.
Mom, Dad and I went to what would be our first of many visits to Penn the end of November, 2014. The staff made us feel so welcome and cared for. Dad liked that. He always said he hated feeling like a number in any situation and people should be treated as that- a person, with respect. A nurse’s assistant brought us into a private room where we met with Dr. Evans, who would be Dad’s oncologist through most of his treatment. She was everything that we needed. She was warm and compassionate and knew exactly how to handle the very delicate situation we were in but yet she was strong willed and determined to fight alongside us. Dr. Evans began talking to us about chemo pills and how they worked. We just stared at each other in confusion. She must have read our faces because she then asked us the magic question “didn’t anyone tell you at your last oncology visit Mr Scott, you have the specific genetic mutation and you qualify for an oral chemotherapy called Tarceva”. Dad began to weep, that was thefirst miracle we received and was a game changer.
Dad took Tarceva for a little over 2 yrs and went through several aggressive rounds of radiation to the hips, spine and eventually his brain. When the Tarceva stopped working we thought Dad was going to turn to traditional chemo therapy but God gave us another miracle. Dad had a second blood test and found out he had a second genetic mutation which allowed him to take another treatment in place of the Tarceva. That second pill was called Tagrisso. Dad had success with the Tagrisso for a little over a year, but like the Tarceva it stopped working early fall of 2017. He was left with two options-stop all treatment or give traditional chemo therapy a try. He struggled with the decision and he knew either way it would be the end. Dad and I made another trip to Penn and in route I told him no matter what he decided, l supported him. When we met with Dr. Evans she asked him what he decided. He looked at me with such a look of determination and said “I promised I would not give up and want my kids and family to know I went out fighting, so that’s what I’m going to do. Lets do this” and he agreed to the traditional chemo, even knowing it would likely be the very thing that took his life. We then set everything set up to begin his IV treatments the next week but God gave us a third miracle. We received a call from Dr. Evans saying the FDA had just approved a brand new medication called Xalkori which he could take along with his Tagrisso to allow the Tagrisso pill to work once again. God kept giving us miracles when we didn’t even ask. Dad did give the Xalkori a go for a little over 2 months and it just made him sick. It was mid November 2017 that Dad decided it was time to leave the fight to God.
Dad lost his battle on January 10, 2018 a little before 5pm while he was holding my mother’s hand. He made my mom promise she’d hold his hand when he passed and he always loved his family around. That day most of us were at his side, except for my husband and daughter. The two of them walked in the door just minutes before 5:00 and we had music playing on Dad’s favorite little Bose speaker. The song “Change is Gonna Come” by Sam Cook was softly playing and with all of his family standing at his bedside, he took his last breath peacefully.
Dad always believed there was a cure to cancer right around the corner and it’s what kept him fighting. Thank you for considering a donation in his name to help with research for finding a cure so our future generations can love cancer free.