“The light shines in the darkness…and the darkness has not overcome it! —The Gospel of John
Nearly seven years ago, while at the end of a long drive to Charlotte, NC, I got a call from my sister Michele. It was one of those phone calls during which your heart stops, as the world seems to momentarily shift on its axis. She had just received word that her middle daughter Jenna had been diagnosed with a rare form of leukemia.
What began a mere two days earlier with Jenna’s visit to her doctor to evaluate a potentially swollen sweat gland, escalated to the need to visit a sequence of specialists and eventually, an oncologist. In disbelief, our worst fears were confirmed and in a flash the whole family strapped itself in for the bumpy ride of coming alongside a loved one who was battling cancer.
Jenna was a remarkable young woman; extremely artistic and free spirited. It seemed clear that she was going to blaze a special road from the moment that she left her mother’s womb. She was tough, resilient and equipped with a lifetime of determination that allowed her to pack more into her twenty-seven years than ever could have been imagined.
While not all her experiences were glamorous, with the benefit of hindsight, most were. By the time that she reached her mid-twenties, she had revolved into a formidable force for good.
She was a dreamer, a realist and a pragmatist rolled into one beautiful young woman. She had been to a few of life’s “rodeos” so she intuitively knew how to keep her center of gravity no matter what challenge she faced. There was a part in each of us that was certain that cancer had met its match in Jenna. The disease was living on borrowed time. We knew that it could win some battles but each of us felt sure that Jenna was destined to win the war. The fight was on and despite the harrowing odds, we reckoned that she’d win.
These days, healthcare can be an oxymoron…at times it can feel as if it delivers neither health nor care. It is often an exhaustive effort just to get through tele-prompts and voice mails to schedule an annual check-up with the dermatologist. Imagine the complexity that is involved when a loving mother learns that her child is confronted by a cancer diagnosis. I pray that you are not already familiar.
In what felt like the blink of an eye, Jenna and her family were at the mercy of the experts. They would struggle in their own ways to cram for a crash course on how to beat the cold-hearted killer into remission. Forced to interpret and choose between the recommendations of a saturated spate of treatment options, they huddled. Jenna’s team rallied and assumed their positions in her defense, while Jenna fortified their reserve power and confidently called the shots in her own treatment plan.
The space in between there and here
Not unlike that of millions of others who have fought this disease, Jenna’s battle was chock full of ups, downs and all-arounds. At various points along her nine-month path to recovery, cancer would throw a hay-maker at Jenna and catch her emotionally or physically off-guard. Miraculously, she would stumble back to her feet and redouble her resolve to win.
Family had an encouraging sense that Jenna had made it into the clear during the Christmas holiday, just eight months into her fight. We were grateful for her reprieve and settled into the mindset that she had begun turning this gruesomely heavy page. Unfortunately, Jenna’s health would take a tragic turn for the worse within just a few weeks.
Upon her return to the hospital, Jenna learned from her care team that they had run out of options. There was only one long-shot that hadn’t yet been considered. It was an experimental “Hail Mary;” a scorch the earth concoction of chemotherapy known as Nelarabine…I remember thinking that the name reminded me of some B movie monster.
The doctors were sobering and candid. They admitted that the odds of survival and recovery were very low. Jenna decided to pursue the treatment. With everything in her, she somehow found the courage to risk what was left of her glorious life on her one remaining chance to come out on top.
She pleaded to her mom, “I want to spend what is left of my life trying to live!” The cancer drug did not deliver the hoped-for response. She never recovered from the nuclear blast that was voluntarily detonated inside her own bloodstream.
Within twenty-four hours, she slipped into a semi-conscious state. At ground-zero, family and friends embraced her and held tight to each other as well. Everyone who knew Jenna held their own vigil for a remarkable life well-lived. She died on January 19, 2010, curled up in bed like a toddler in the loving embrace of her mother and father.
What is life like now:
Life is different now. It is hard for me to put the feelings into words because I am much more in touch with how fragile this life is and that awareness can be troubling. At the same time, there is a larger part of me that is always trying to keep my own attention by asking, what am I waiting for? Life is short…just go for it!
Since Jenna’s death, I have been humbled and graced to witness my sister’s recovery. She has ministered to other families who confront similar challenges with kids who battle cancer. There is a bright light that beams from inside of Michele. It is one that testifies to her knowledge of the most extreme types of danger and confirms that she has been brought low by grief. She has survived life’s deepest cut. She is changed, but in no way diminished. Remarkably, she is better and not bitter. She is broken, but mending. She has become a faithful steward of the approach and fundraising effort that she created in Jenna’s memory…Jennarosity.
We are all writing a love letter with our lives. Some letters are longer than others, while others are ghost-written in a tragic misallocation of divine resources. No matter our circumstances, each of us can again take back the pen and paper to continue writing our incredible story…the most authentic love letter written with our own lives.
Thomas “TD” Dierker
Live like you’re dying…. cause you are!