As each word came into focus, I was riveted, gutted and waiting for the inevitable to unfold. While I read the article entitled When Do You Give Up On Treating A Child With Cancer, by Melanie Thenstrom published on May 12, 2016 in the New York Times magazine, I pictured so much time spent in my daughter’s small pink room waiting for the inevitability of her death. Alexis’ story did not include a time when she got out of bed, ran around and ate pizza, as did Andrew Levy’s. Andrew’s story, in the end, is the one that all those who hear the words, “your child has cancer” hope and pray for. I read Thenstrom’s piece with some outside hope, although diminishing throughout, not knowing how the story unfolded. Waiting for that next sentence to bespeak of a tragic outcome. The same outcome that I witnessed as my daughter took her final breath on January 14, 2011 shortly after 3:00 pm. I am happy for the conclusion that the Levy’s experienced thus far, and I hope that they make it out of the woods on the long journey that remains ahead. And while I am being honest, I am also jealous that Alexis’ story did not have such an ending.
But that is not the true crux of the piece or my commentary. Rather, Thenstrom’s piece is a raw elucidation of the torture parents, caregivers, and medical professionals go through in making treatment decisions. Ultimately, the decision of what treatment to choose, when to choose it, and when to unfortunately discontinue treatment if there is no benefit, simply put is a hellacious torture crafter in one of Dante’s seven circles of hell. I have watched as parents of children diagnosed with DIPG, the same terminal brain cancer Alexis had, decided not to submit their child to radiation treatment. Radiation therapy is simply palliative in nature and will only “buy” the child extra time, or extend the “honeymoon period.” As with all forms of cancer treatment, radiation therapy is not without serious side effects. It is the “gift that keeps on giving.” I have also watched as parents and caregivers travel the four corners of the globe seeking to find the Holy Grail for their child. In the end, the decision of treatment path, including when to stop treatment, is one that is rarely marked by bright lines or clear answers. For Alexis, her clinical oncologist always told us, you would know when the time comes to stop. I suppose that it is a tremendous understatement to say that there are no easy decisions when you face life and death choices. All parents and caregivers earn their battle scars and post traumatic stress as a result of this wrangling.
For those who will encounter family members, friends, and colleagues who face the unbearable road of childhood cancer, or any life threatening disease or condition, there is a moral that is buried in the piece. Respect the journey of the parents and caregivers just as much as you respect the journey of the child. Early into Alexis’ diagnosis, I was able to get out for a run with my training group. Afterwards, one individual came up to me after he heard the news about her diagnosis. He launched into a self-lauded dissertation about his knowledge of how to cure cancer. My ears perked up immediately. I had a daughter that was marked for death by a terminal brain cancer; of course I wanted to know how to cure her. He proceeded to tell me that if I starved my twenty-seven month old daughter for approximately thirty days, the cancer would die. I looked at him with jaundiced eyes. I asked him calmly how I was supposed to keep my little girl from eating when she was on steroids and needed nutrition and nourishment. To which, he clearly responded that she could have bananas and maybe a couple other small items of food. Stunned, dumbfounded, and marginally pissed, I looked him in the eyes and calmly told him that if the cure for Alexis’ cancer was in his beating heart it would already be out of his chest and in my hands for him to see its final beats. My point is, please be careful what you say to someone in the position of the Levy’s or the legions of other parents or caregivers who are forced into such painful decisions. As good-natured as people may be, there can be pain associated with things said in the most innocuous manner.
Thenstrom’s piece is beautiful. Andrew’s story and the Levy’s grace that shines through are instructive and uplifting once you can wipe the tears from your eyes. As I hung on every word without knowing how the story would unfold, but believing that there was a heartbreaking inevitability about to strike the Levy family, I once again felt the weight of the decisions that came to pass along Alexis’ journey. Looking back, the decisions made about Alexis’ treatment never came easily. Decisions were made that exposed her to drugs that impacted her quality of life on a daily basis. And then, in October 2010, when she was placed on hospice, ultimately there would be no more decisions as to which treatment to select. There were times that treatment options were discussed as Alexis gained a little strength here and there. Ultimately, Alexis guided each decision though, and as her parents, we knew that the time had come to stop searching for the next potential treatment.
Finally, I do need to say something in closing. The title of Thenstrom’s piece sticks in my throat a little. “Give up.” Those words stick out so loudly. Making the decision to discontinue treatment or to not seek a new treatment is not “giving up.” The decision to stop pursuing treatment is not “giving up,” rather it is an informed decision by parents and caregivers to do what they believe is in the best interest of their child. We never “give up.” We only do our best.
Jonathan Eric Agin is a childhood cancer advocate, speaker and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011. Mr. Agin is the Director of External Affairs for the Max Cure Foundation and the General Counsel for the Children’s Cancer Therapy Development Institute. Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation. In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.