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"When he walked into his office that morning, the first thing he saw was Louis, low in vitality, resting on the examination table. Dr. Germain dropped the folder of X-rays he was carrying. A mishap from an organized man might well indicate a sense of disturbance, and Gregory Germain’s momentary and uncharacteristic clumsiness did speak volumes—he had dreadful news to share. The blood tests taken at the same time as the recent X-rays were showing what he called—for the moment “extreme anemia,” meaning low blood counts, low energy, and a lack of oxygen that would produce lethargy. With kindness and urgency, he insisted we go to the Children’s Emergency Room at Yale-New Haven Hospital, where he would meet us immediately. My wife and I looked at each other and then we both looked at Louis in total silence."
"Naturally, I had to Google the word nadir in the context of this strange world of chemo. It turns out that adults in chemotherapy hit the nadir within ten days after their initial treatment. Adults are typically given a break before the second dosage to allow the cells to rebuild. Normal service, as it were, is resumed in twenty to thirty days in an adult body. A child’s metabolism is different. Often, shorter timespans prevail—both in reaching the nadir and rising from it. Why, then, might anyone—why might Louis Unger—need a bone marrow transplant?”
"While Mary Ellen was spending time with Lou at the hospital and I was at home with Harry we talked on the phone about somehow getting the boys together. Suddenly, I was inspired with a crazy plan. I said, “Okay, we’re driving to Yale, I’m going to put Harry in a suitcase, and I’m just going to wheel the suitcase in, right? Nobody’s going to know. I’m going to wheel the suitcase into Lou’s room, and put it down. And then, when I pop it open Lou’s going to be surprised” Finally, some fun!
Harry remembers it well: “Oh, we walked in with the suitcase. We went up to an empty floor, unzipped the case and I got in the fetal position and crawled in. He zipped me up, pressed the button—I remember him talking with the doctors, there are like doctors in the elevator and we were really nonchalant and we got out. He rolls me in the room, opens up the case, and Louis is so happy. He was fantastic!”
"I had a bad feeling when we drove the twenty minutes to Yale. Mary Ellen was worried, of course, but Louis was being tested for cancer, full battery of scans, bloodwork, biopsy once a month so I wasn’t expecting the brain tumor, how would that not have shown up in the testing?
Now we stared at each other again and our thoughts instantly crossed—this is bad, very bad. My mind was racing.
The roller-coaster had crashed. Our trap door opened and I was falling hard. Louis had relapsed. Not just a “normal” relapse but a brain tumor. It was the most feared of all neuroblastoma relapses. What are the chances of survival? This time we knew. We’d done our homework. We’d heard the doctor in Chicago. The fact was that no child had ever survived a neuroblastoma relapse presenting as a brain tumor. In other words, the chances were zero.”
"Mary Ellen and Mark Unger are parent advocates like I had never seen before or since. Negotiating the complicated world of Pediatric Oncology, the varied clinicians, the medical terminology, multiple medical centers, experimental protocols, and the emotional ups and downs of advanced parenting must have seemed impossible. But the Ungers, not medically trained when they started this journey, took on the challenge and were incredibly effective. Eventually, I think, saving their son's life. Mary Ellen and Mark stand as role models for all parents who advocate for their kids. And they have shown me that effective advocacy is not only important for every parent, but it is possible in any situation. Even the most dire."
"So very many aspects of Louis’ story stand out incomparably – and so vividly highlight the virtuous side of the human condition and predicament. Some of us might be most moved and inspired by Louis’ parents, with their love, devotion, dedication, fortitude, self-sacrifice. Nothing is more precious than an innocent child – or more tragic, difficult to confront, and beyond human understanding than when a young one is stricken by a lethal malady that causes pain and suffering. So how wonderful it is that Louis has now grown up to be a thriving and vibrant young man! And how amazing it is that every one of the untold number of killer cancer cells that had permeated his entire body could be eradicated. Kudos to the multi-varied treatment program that included powerful chemotherapy, targeted immunotherapy, as well as the then novel and experimental attack against relapse in the brain - all developed at MSK."
“It was difficult to believe the tides would change when Louis was unfairly handed a lethal diagnosis, one that resulted in death for all too many innocent children. To be a part of Louis’ journey is a privilege I hold dear to my heart… to hold his shining smile up to the children that come after him is a gift unparalleled. As a reader of Louis’ story, you too can embrace him, and all that his story represents…”
"This book chronicles the suffering, despair, and ultimate triumph of the Unger family in overcoming a deadly pediatric cancer called neuroblastoma. Faced with desperate situations, his loving family was determined to save his young life by reaching out to friends and the internet to search for expertise in novel cancer therapies. Throughout this arduous journey, and without any guarantee of success, they have courageously walked into the unknown. Louis was indeed a trail blazer in the then untested clinical study, which has now proven to help many other children afflicted with neuroblastoma that has spread to the brain. We all salute the Ungers for their courage."
son’s battle with childhood cancer changed everything for my family. Sharing
our story brings all the difficult emotions flooding back, but I believe it's a
journey worth describing because it might help others. This book shows how my
family cried, laughed, and rode the scariest roller coaster imaginable.
son’s survival became an obsession. We learned it was ultimately up to us to
protect our son and to find the best path for his survival. Louis, who was
three when first diagnosed, showed the unrelenting courage and determination of
a true warrior. He gave us the strength to confront and reject the diagnosis of
“Zero chance of survival.”
I hope this book honors our extended family, friends, and the dedicated doctors who ultimately made the difference between life and death for our son. My message is this: There are no dead ends, only new paths.
All proceeds from this book will go to the Carrot Seed
Foundation. Mark and his wife started this foundation to help find a cure for
neuroblastoma and to support the children and families who are stricken by this
For more information go to http://www.carrotseedfoundation.com
In 2007, a group of desperate families asked the head of neuroblastoma program at Memorial Sloan Kettering, Dr. Nai-Kong Cheung, what they could do to help their children. He said there was a severe lack of funding for research and that better treatments are on the horizon, but could only come to fruition with more research. A short time later, about 100 families of children in treatment for neuroblastoma came together to form the Band of Parents. In the past decade, it has expanded its advocacy, funding research in several major cancer centers throughout the U.S. Band of Parents has committed more than $6 million to neuroblastoma research. For more information or to donate, please go to: https://www.bandofparents.org
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