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The Oncologist, the Patient and CKN — Sharing Knowledge

Tag Archives: Childhood cancer

We Must Consider New Strategies to Deliver Health Care to Childhood Cancer Survivors

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood.  Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families.  Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship.  His goal is simple:  to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.

 


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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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The Financial Impact of Surviving Childhood Cancer

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood.  Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families.  Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship.  His goal is simple:  to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.

 


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From the Lab: Scientists Pinpoint Genetic Changes in Radiation-induced Meningiomas

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood.  Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families.  Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship.  His goal is simple:  to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.

 


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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

What I’ve learned from Kids with Cancer

by Khevin Barnes—Male Breast Cancer Survivor

 

Long before my own cancer diagnosis I received this life-changing lesson in courage

 

One of my favorite memories as a magician performing for kid’s cancer camps happened twenty years ago, long before my own male breast cancer was diagnosed.  It was my wife at the time as she battled stage 3 ovarian cancer who created this poignant moment; an event that was to change my life forever.

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