by Jonathan Agin, Childhood Cancer Advocate, CKN Editor
PERSPECTIVE | A mother’s desperate attempt to keep her 12-year-old alive
Recently, there have been several news pieces written about the deadliest pediatric brain tumor, diffuse intrinsic pontine glioma or DIPG for short. Several articles have specifically been run in the Washington Post with the latest appearing on August 21, 2017. The piece by Petula Dvorak, title above, shares the story of Melany Knott and her 12-year-old daughter Kaisy. Kaisy, who lives in a rural area in Maryland, has opted to travel to Monterey Mexico for treatment rather than remain in the Washington Metropolitan area, or any of the other large pediatric facilities stateside within a few hours drive. Within a twenty-mile radius in the Metro DC area sit two major clinical treatment centers with well-known neuro oncologists that have treated a significant number of children with DIPG. Children’s National Medical Center (CNMC) and the National Institutes of Health (NIH). Unfortunately, I am personally familiar with CNMC, NIH and the clinicians and researchers at both institutions as my own daughter Alexis was treated in each facility before she died of DIPG in January 14, 2011. The clinicians and researchers at both locations are top notch. In the case of Kaisy’s treatment, despite the proximity of these two clinical options, she will travel thousands of miles away to a foreign country at great expense (noted in the article at $33,000.00 for each round of therapy) to obtain treatment.
by Jonathan Agin, Childhood Cancer Advocate, CKN Editor
Childhood Cancer: Changing the Rules of Engagement for Hope
Recently, I found myself drawn to author Malcolm Gladwell’s works. The latest book that caught my attention is David and Goliath: Underdogs, Misfits and the Art of Battling Giants. In the beginning of the book, Gladwell recounts the epic battle between the seemingly meek shepherd David and the giant Goliath, who was adorned in armor from head to toe, and accompanied by an aide carrying several weapons for use in the battle. Following Gladwell’s description of the battle, which we know was devastatingly and decisively won by David, he then deconstructs this ancient story and shifts the reader’s perspective dramatically. Rather than simply the triumph of an underdog over impossible odds, Gladwell believes that the more important lesson learned is that David created new rules for engagement. Victory it seemed depended upon overcoming insanity. Gladwell argues that Goliath, and all those gathered to observe the giant’s anticipated victory, expected David to engage him at close range with a handheld weapon, thus playing right into the giant’s strengths. Instead, David utilized a destructive weapon with precision, surprise and deadly force and slayed the giant. Accordingly, David’s victory was not at all miraculous; rather it was a result of his understanding that he had to approach the challenge and the problem differently and decisively to gain victory. Continue reading
by Danielle Cloakey, Childhood Cancer Survivor and Advocate
Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.
by Jonathan Agin, CKN Section Editor
Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents. This was the first osteosarcoma conference of its type. For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air. Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more. The agenda was amazingly and stressfully jam-packed. The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community. The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.” I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference. And thus, welcome to Miami circa February 2017.
by Jonathan Agin, Childhood Cancer Advocate
Someone once said that hope springs eternal. In the context of cancer around the world, as 2016 came to a close and 2017 dawned, a palpable sense of hope continued to take root despite the backdrop of a cautious and uncertain landscape. Peeling back the layers of hope, there are a number of dynamic factors that have fueled this optimism. A greater understanding of the underlying genetic and molecular targets and drivers of cancer continues to expand almost daily. Global efforts to unlock new targets and treatments, precision guided therapies, precision medicine, investigation into the use of drugs widely proliferated in other diseases, cheaper access to genetic testing, and on and on, all form the foundation of hope. Hope is not created through alternative facts; rather it is nourished by steadfast effort. For those of us in the cancer advocacy community, effort is never lacking.
by Karen Ladner Haas, Childhood Cancer Advocate
Going into 2017, I have mixed emotions about cancer. I feel optimistic about my son’s battle with the disease itself, but I am frustrated about the long term side effects of the treatment he endured. It seems that with each passing year, we find out about more long term effects. I know from discussions with other parents, and from our personal experience, that survivors face numerous issues. Long term effects of cancer treatment are a complex problem that can involve or lead to physical, cognitive, and mental health issues. Regular follow-up is necessary, and for many of the issues this means trips to the hospital. These trips can be physically, financially, and emotionally draining.