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DIPG: The hope and promise of a homerun cure

Lauren Hill

Lauren Hill

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.

 

If researchers could find a cure for DIPG, with all of these inherent challenges, the potential translation beyond DIPG specifically could be immense.  When my daughter Alexis was diagnosed with DIPG in April 2008 at just twenty-seven months old, I was shocked to learn that there was no cure or no ability to surgically remove the tumor.  This seemed like such a foreign concept.  With all the remarkable scientific discoveries, there simply was nothing that modern medicine could do to save Alexis.  The tumor was no more than several inches from the outside of her head.  Yet, it might as well have been outside of the solar system it was that unreachable.  The more I learned about DIPG and the state of childhood cancer research overall, the more apparent it became that there was an opportunity from the tragedy of Alexis’ diagnosis and every other child diagnosed with this killer.

 

By tackling a cancer that, by its very nature, is so inherently difficulty to treat, and by finding an actual cure, the lessons learned and the applications for those methods could perhaps provide the turning point in this long and lengthy war on cancer.  For DIPG, there has never been more awareness of this single type of childhood cancer than at the present moment.  There is a young woman from Indiana who had a dream to play college basketball.  Lauren Hill was diagnosed with DIPG as a senior in high school, well beyond the general age of diagnosis.  (Simply Google Lauren Hill’s name with DIPG attached to the search and you will see true inspiration).  As her story broke, and her dream to play college basketball began to unfold in the United States media and beyond, those four letters, DIPG, gained amazing recognition and awareness.  Lauren’s efforts have already netted over one million dollars for DIPG research.  More importantly, the notion of the homerun cure has been further solidified and significant momentum has been built.

 

There are lessons to be learned from past investments into childhood cancer research.  When Sidney Farber, MD began his great push to cure leukemia, the overall prognosis was dismal.  Dr. Farber was convinced that curing leukemia, especially in children, would unlock the secrets to medicine’s ability to cure numerous other forms of disease.  And so, with conviction, purpose, a margin of luck in finding a new available drug, and a significant investment in the research, Dr. Farber proved the point that I am trying to make here today.  By identifying the most difficult problems and focusing concerted effort, investment and incentive upon those challenges, the rewards are often translatable beyond the original focus.

 

DIPG, in my opinion and the opinion of a growing chorus represents just such a challenge and an opportunity.  It is the moonshot, the first ascent up Mt. Everest and the search for the Titanic all rolled into one.  I will never forget a conversation I had with a member of my daughter’s carefully selected treatment team.  This well-respected neuro-oncologist was primarily focusing upon the treatment of DIPG.  It was 2009, and we were engaged in a discussion on the state of DIPG research and the overall lack of investment.  Her comment to me was telling.  In her words, she stated that in the past if a researcher specifically focused upon DIPG it was considered “career suicide.”  Thankfully though, she went on to say that this notion was no longer true.  Because of motivated families who refused to take the diagnosis of DIPG as an automatic death sentence, the tide has turned.  The creation of the DIPG Collaborative, which I previously wrote about, and the DIPG Pre-Clinical Consortium has dramatically altered this thought process and fully paved the way for DIPG to stand as a watershed in the treatment of childhood and adult cancers alike.  I am encouraged that discoveries are being made that are a direct and traceable outgrowth of these efforts and the increasing investments into DIPG research.

 

Today, there is an opportunity that exists.  It is an opportunity to turn a tragic diagnosis into a translatable roadmap for a cure to many other forms of cancer.  It stands before our eyes like the moon stood before John F. Kennedy.  It represents a challenge that could provide man as much hope as those first few steps on the lunar surface did all those years ago.  Cracking the puzzle that is DIPG represents one giant step for children with DIPG, and one enormous leap for oncology.  A homerun indeed.

 

Related Content:

The Long Road to Hope for Children with DIPG
Introducing the DIPG Collaborative

 


 

jonathanaginSMALLJonathan Eric Agin is a childhood cancer advocate, speaker  and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011.  Mr. Agin is the Director of External Affairs for the Max Cure Foundation and the General Counsel for the Children’s Cancer Therapy Development Institute.  Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation. In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.

 


 

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3 Responses to DIPG: The hope and promise of a homerun cure

  1. I keep hoping for a miracle for my granddaughter Lauren Hill, that they find something that will work on this monster before time runs out. I can see her getting weaker, and the pain is really bad, even with the pain pump and the fact that all they can give her is steroids which cause even more pain and make her not even look like herself is inexcusable. We need to do something for these poor children and Lauren has done her best to get the word out for all kids now our government needs to step up. Thank you for spreading the awareness.

    • Carol, your granddaughter, like my amazing daughter Alexis, has inspired me to live without fear, to fight, and to continue to see through the journey that my daughter started to the end. And that end is for a cure for DIPG and all children with cancer. Thank you for your reply and for reading my piece.

      Jonathan

  2. Arif Ahmed says:

    This is disgraceful for the US government didn’t have any proper investment like billions of dollars to save four hundred children last fifty years while they can spend trillions of dollars tax payers money on space shuttle programme fifty years ago . If Kennedy administration had spent one billions of dollars as starting and call all the researchers together to create a consortium to find a proper to save all these children they would have found a proper cure at least ten fifteen years ago and all these children robbed by this vicious monster dipg would have saved. Instead of taking care of children of his own country he was rather busy in arms race with Russia which is disgraceful. All these children got killed by this monster dipg in Last fifteen years would have saved by his administration initiative to show dignity about about children life. It is government primary duty to take care of children life which all other past administration failed to do this. 400 children life has no value for Kennedy administration because they small in number because they have got no voice or vote. It is their parents feel how important their lives are . No amount money will be able to bring them and US government shamefully failed to do this first duty to safeguard their children from this vicious child killer dipg. Because of last fifty years all this US administration failed to invest any significant amount money to find a proper cure for this monster dipg. All these research are going on now is done by the family who were affected by this child killer dipg. People like Lauren hill has done jobs to raise awareness and raise money to do vital research to find a proper cure for this beast which her last eight administration had shamelessly failed to do this first duty to protect their children from monster. Shame on on last eight us administration and their official should be put on trial for criminal negligence attitudes towards its child population. All the parents who have small children should raise their voice against this injustice towards children and form strong public opinion and forced their government to invest billions of dollars to find a proper cure for this vicious monster which are killing children mercilessly otherwise every one child is in mortal danger until this beast is tamed because you simply don’t know when this beast will strike whose kids and when it will strike. Then you will lose your kids without knowing that it will kill so quickly nobody will be there to help you. You have to witness how fast this beast will kill your child and you have to live your rest of the life with immense pain and suffering like me. So all the parents wake up now for children life safety before it is too late. Arif Ahmed

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