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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. 

The story is compelling, yet tragically not unfamiliar.  It is the ultimate human-interest piece set upon a mother’s desperate attempt to save her child.  Current treatment options for DIPG are a tacit acknowledgment that the child has been sentenced to death.  The story highlights an extremely difficult issue that is confronted by parents and caregivers facing the diagnosis of their child with DIPG. Specifically, there has not been a single advance in the overall survival rate for children with DIPG since its classification, or more than fifty years.  Any parent faced with this situation that conducts even a cursory amount of internet research and chooses to read any of the literature or multitude of journal articles available is punched in the gut by the same statements in the first line of almost every piece.  “Dismal prognosis.”  “Universally Fatal.” 

I speak to a significant number of families facing this diagnosis.  One of the most pervasive statements I hear, almost in every single conversation, is this notion that there is a right choice for treatment versus a wrong choice.  Everyone just wants to “do the right thing.”  The problem here, based upon current clinical trial options and standard conventional guidance, is that there is no “right thing.”  If there were a “right” protocol for children with DIPG I would not be writing this comment and the Washington Post would not run a story about Kaisy. 

In reality, the modality of drug delivery utilized in Monterey is not new or novel.  In fact, there have been clinical trials in the United States that utilized the same method, intra arterial, to deliver drugs for pediatric brain cancer patients, as there is evidence that the drugs penetrate beyond the blood brain barrier.  (In very simplistic terms, the blood brain barrier is a naturally occurring “filter” that is designed to keep harmful substances directly out of the brain).  None have shown any efficacy.  The difference in this case is that the clinicians in Monterey are utilizing quite a few different drugs through the course of treatment as well as layering in immunotherapies.  The allure of Monterey lies in the fact that it is viewed as aggressive, and moreover offers drug combinations only available in that location for the time being.  The questions regarding the full list of drugs being administered, in what quantities and the lack of data being provided puts the clinicians squarely in the crosshairs for significant criticism from many in the peer reviewed community.  In addition, there is also the overwhelming price tag. Some patients have spent hundreds of thousands of dollars thus far.  More importantly, short-term, mid-term and long-term efficacy is still unknown outside of what the families there are communicating and what they share on social media.  Children that have chosen to treat in Monterey have died.  Lest anyone believe that it is a homerun. 

Ultimately, there is no effective protocol for DIPG, no clear path and there is not a single clinical location where parents can obtain each therapeutic modality or all the different drugs potentially available for use.  Thus, this desperate march to distant locations for treatment will continue until such a time.  The clinicians that see the most cases of children with DIPG fall along a continuum of how they seek to treat these kids.  This ranges from standard radiation and comfort measures overlaid with significant resignation, to steadfast aggression aimed at moving beyond the fears associated with treating an almost universally fatal diagnosis. 

Thus, the decision that Melady Knott made to take Kaisy to Monterey Mexico in a desperate attempt to save her life is much more understandable from a thirty-thousand foot view than simply observing it in a vacuum.  The more important take away is the need to push beyond the over indulgent fear associated with the treatment of children with DIPG, and children with cancer in general, and the harm that it may bring, to the use of more aggressive and hopefully efficacious treatments.  I am quite certain Melady would let you walk a mile or four in her shoes to understand why they made the choice they made. 


 

Jonathan Eric Agin, JD, is the Executive Director for the Max Cure Foundation and the Institutional Official, Development Liaison for the Children’s Cancer Therapy Development Institute, a non-profit childhood cancer research biotech located in Beaverton, OR.  He is also the Cancer Knowledge Network (Canadian Oncology Journal) Childhood Cancer Awareness and Advocacy Section Co-Editor and frequent contributor to the Huffington Post.  Jonathan is an attorney by training and a former trial lawyer from Washington, DC.  He is one of the most recognized names in the childhood cancer community.  He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013).  This legislation was later enacted into law as part of the overall budget deal of 2013.  Jonathan’s legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation and he continues to work closely with members of the community and beyond on legislative initiatives impacting the rare disease community.  He has provided public comment before the FDA pedODAC Committee on the topic of biopsy in children with DIPG (an inoperable and almost universally fatal pediatric brain tumor).  Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG  in April 2008.  Alexis battled heroically for thirty-three months until January 14, 2011.  Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer organizations in an effort to improve the plight of children with cancer.  He is an original founding steering council member of the DIPG Collaborative.  Jonathan resides in Falls Church, Virginia and has four children, Alexis (1-31-06 to 1-14-11), Gabriel age 7, Trevor age 4 and Kylie 2 years.  Jonathan maintains his own website for his advocacy activities: www.jonathanagin.com and can be followed on Twitter @jonathanagin.  In his spare time he also competes in endurance events like running marathons and triathlons.

 


 

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

  1. Ginger Diamond says:

    I have seen more and more stories of children diagnosed with this dreaded childhood cancer.
    Thanks for sharing the story and the facts Jonathan.

    • Thank you Ginger. I would love to have a true study to determine accurate numbers for how many kids are diagnosed annually with DIPG. I think we would all be surprised.

      • Jodi Olson says:

        Jonathan I would also like to see the number. How can I find out how many kids have passed away from DIPG in a 3 mile radius?

        • Jodi Olson says:

          Sorry 30 mile radius

        • I don’t know that those statistics are going to be readily available, maintained or discoverable. Backing out from DIPG specifically, I don’t know that we have an accurate number for all the kids diagnosed with cancer period. The generally accepted number is 15,780 a year in the US. I personally believe this number is low. The number of deaths that get attributed directly to childhood cancer each year in the US is approximately 2,000. This is truly false in that if the child is 5 years “cancer free” or even further out from the initial diagnosis and dies of heart failure or some other secondary issue, it is not attributed to childhood cancer despite the fact that the child would not have died but for the cancer and the treatments endured. These are questions that I just don’t feel are being truly investigated to the degree necessary.

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