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Tag Archives: jonathan agin

Comment: A mom’s fight against her child’s lethal brain cancer leads to Mexico

jonathanaginSMALLby 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. 

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David vs. Goliath

jonathanaginSMALLby 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

The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians

jonathanaginSMALLby 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.


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World Cancer Day 2017: A few words from Jonathan Agin

jonathanaginSMALLby 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.


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What September Means to Me: by Jonathan Agin

goldribbon by Jonathan Agin, CKN Section Editor


I find it difficult to put into words what the month of September means to me.  Truly difficult on several levels actually.  There is a part of me that actually does not look forward to the month.  It is a thirty-day period in which so many people across the country and the world – having heard the words “your child has cancer” or being moved to action for the cause of childhood cancer – focus an incalculable amount of energy.  It is a time that is reserved for childhood cancer advocates to stand on an elevated stage of awareness aimed at generating greater focus for the number one cause of death by disease in children in the United States.  It is a time when those who have been unwillingly drafted into the cause and those who have willingly decided that they should “do something” about childhood cancer seek to have gold emblazoned upon the collective conscious of a world that is plagued by so many worthy causes.  September is a month that allows those of us in this fight to galvanize and showcase our pain and anguish in a concentrated fashion for children with cancer.


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Editor’s Comment: When Do You Give Up On Treating A Child With Cancer

JonathanAgin2by Jonathan Agin, Childhood Cancer Co-Editor


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.


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