We can all learn some things from an extraordinary young man.
So much of life is made up of moments that are simply beyond our control. Nobody chooses for bad things to happen to good people. While it is medically factual that your attitude will not change a diagnosis, that doesn’t mean putting your best foot forward doesn’t have its own benefits. I have witnessed that on many occasions since cancer came into my life from many different people. One of these persons was a 17-year-old young man named Jack.
In a word, Jack was extraordinary. If you looked at a photo of 500 people, you’d never know which one was him. He didn’t have a crazy hairdo, no Hollywood good looks or a crooked smile to make him stand out. No, Jack was extraordinary because of who he was. At 17, he was a young man excelling in genetics and science. On a fast-track to a scholarship from many elite colleges, he had the brightest of futures in front of him.
Jack was diagnosed with cancer the summer before his senior year. A scan was done on a whim because of headaches. He had played sports as a child and suffered two concussions so his doctor was seeking a cause. Instead, on Aug. 23, 2016 Jack was diagnosed with stage 4 acute lymphoblastic leukemia (ALL). It had already spread to his spinal fluid and brain. His prognosis was that he had four to seven months to live.
The thing is, those who didn’t know Jack would have never known that he was so sick. And for those of us who knew Jack, he made it easy to forget. He didn’t blink an eye when diagnosed. The first thing he told his doctor was that the oncology consult would have to wait until Tuesday because he wasn’t missing Open House night for his senior year. Because although he had just been told that he had cancer, he made a conscious choice to not let cancer dictate his life.
When Jack met his oncologist for the first time, he said that all treatments had to happen on Friday nights because he wasn’t going to miss school for cancer. In the end, he missed four days because of two separate infections before taking a leave of absence right before winter break. He maintained nearly perfect grades and was set to graduate on time with honors. Jack did not want to fit the mold of any preconceived notions that people had about patients with cancer.
He wanted to fish, hick and hunt with Lucy, his copper-colored labradoodle. When diagnosed, he had assumed he would not get to be with her. So, to spite everyone, he brought her to that first oncology consult, and everyone after. Because again, cancer wasn’t going to make his choices for him. Lucy was his baby and she would always be beside him. When he was his sickest, Lucy would go hours without even twitching, and it was a chore to let her out because she hated leaving his side. It took his whistle and the OK from Jack for her to be anywhere but next to him.
Jack endured countless failed treatments before entering hospice in February of this year. He was just shy of five months post-diagnosis, and it was clear that treatments were not working. They were painful and it was frustrating for him because no matter what he did, how badly he wanted it, cancer was getting the final say. We chose a facility nearest his family and, despite their wishes, he chose not to be home. For one of his greatest fears was him being a burden on those that he loved most.
In May, I went to visit Jack and tell he had an option to enroll in a clinical trial. No promises, no guarantees, no time-frame and no data. He would be one a few to try a multi-agent immunotherapy regimen, and all we could do was hope. He was frail, and upset that he missed most of school’s second semester, but still smiling. I knew what his answer would be, but I wanted to give him every opportunity to make the choice.
I told him that he had time, not much, but some. He did have enough time to think, and he told me words that will forever be etched on my mind. “Anything I endure, suffer or sustain will be far less than everything that my family will one day experience by my passing.” A true and rational thought from a 17-year-old boy who spoke truth that was absolutely heartbreaking to hear. He enrolled that afternoon and was moved to the ICU to begin his regimen as fast as it could be mixed and brought from Boston to Colorado.
As remarkable a young man as Jack was, there sadly wasn’t a miraculous cure or a happy ending to an incredibly valiant fight. On the date Jack liked to refer as his “expiration date,” two days before he was set to graduate high school and three weeks short of his 18th birthday, Jack received his second infusion. While it was being dosed, Jack suffered a mass seizure with cardiac arrest and passed away.
When I said Jack was extraordinary, it wasn’t because he survived a terminal illness. He didn’t attend college, fall in love and prove all the doctors wrong. No, it is because despite cancer and that he was just 17, he gave his life fighting for a cure. He allowed for an experimental a treatment to occur, despite his own thoughts that he would still die, knowing that what we could learn may help others. He was hoping that someday, somebody wouldn’t suffer has he did.
I am thrilled to say that the treatment regimen he took is being expanded into a broader phase 2 trial in the fall of this year, with open enrollment for all patients diagnosed before stage 3. What Jack and patients like him taught us has helped science to better understand the complexities of ALL. Jack’s family was given his diploma and his scholarship funds have been passed on to three lucky individuals who will be learning his story when they begin school in a few short weeks.
My hope is that they approach life and science as Jack did — with an open mind and a willingness to see beyond now to focus on the future. Because those traits are what made Jack extraordinary. And it is why I am extraordinarily lucky to have known such a brave young man.