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 Jonathan Agin, Co-Editor, Childhood Cancer Advocacy
In 2008, when our twenty-seven month old daughter Alexis was diagnosed with something called DIPG, or diffuse intrinsic pontine glioma, I knew nothing about the world of childhood cancer or even the terror that those letters cause. Alexis was by all accounts a normally developing child. She enjoyed music, TV shows, blowing bubbles, art projects and so much more. She ran, she jumped, she played and she was going to her first nursery school program. There was an issue for several months when she was vomiting at night, as well as a very slight and intermittent concern with her right eye turning inward. What we anticipated to be nothing more than lazy eye turned out to be a pediatric brain tumor.
by Jonathan Agin, Childhood Cancer Awareness and Advocacy Co-Editor
What if by curing one type of childhood cancer, you could find a cure for many other forms of cancer? What if by curing one type of childhood cancer, you could cure all cancer? The “homerun cure.” The theory is that by focusing on the most difficult cancers to treat and by actually finding successful treatments, the widespread application across a broad spectrum of cancers could truly make a monumental impact. This theory is being put to the test in relation to DIPG or diffuse intrinsic pontine glioma, an inoperable, incurable and almost universally fatal type of pediatric brain cancer that generally strikes children between the ages of five to eight years old. What makes DIPG the perfect case for this theory is a number of factors. The location of the tumor makes DIPG tremendously difficult to treat. Surrounding and intertwined with the Pons, the central control for all of life’s major functions, the tissue of this tumor is often indistinguishable from healthy tissue. Consequently, there is no ability to surgically resect this tumor. Another significant challenge is that the blood brain barrier acts as a natural filter and ensures that most drugs, given orally or intravenously, fail to reach the tumor at effective therapeutic levels. Beyond the blood brain barrier itself, even when there is a method to ensure drug delivery, there are no drugs that have shown any efficacy. Finally, DIPG is not a homogeneous solid mass. In autopsy tissue analysis the tumor itself can have several different classifications, thus there are many different “targets” to shoot at with a single drug or agent.
by Jonathan Agin, Editor Childhood Cancer Awareness and Advocacy
Joke: What do you get when you put seventy of the world’s top physicians in one room, and forty childhood cancer parents and foundations in another? Answer: Progress.
On May 3rd and 4th, in Cincinnati, Ohio, the second DIPG Collaborative Symposium (www.dipg.org) occurred with amazing results and direction. By the end of the day on Saturday May 4th, well over one million dollars was collectively raised and pledged by close to twenty different foundations and families to support the collaborative research that is mandated by this international group.