SOS American Children Dying Daily #CureDIPG

November 13, 2016

Re:  SOS; American Children Dying Daily #CureDIPG #JacksAngels

DIPG Report                Letter to President Obama 9/6/2016   H.Res.586

To the Honorable President-Elect Trump and his Staff:

I write to you with great hope in my heart that indeed the change you represent in American History will favor Government’s hearing the urgent needs of our most vulnerable citizens, our children with terminal cancer.  I’ll preface my story by telling you that I was greatly disappointed and puzzled by the lack of response from the 2008-2016 Administration to the appeals of thousands of parents over the last several years for more consideration for Government research funding to save the lives of children with cancer.  Only 4% of the NCI budget benefits pediatric cancer as a whole.  Though we deeply appreciated President Obama’s Proclamation for Childhood Cancer Awareness Month in September of 2010, and then again in 2014 and 2016, little to nothing was done to acknowledge the neglect of pediatric cancer research funding by the National Cancer Institute.  Yes, more funding to NIH is crucial, but it makes no difference in how the NCI prioritizes research grants.  DIPG, diffuse intrinsic pontine glioma, is one of the top killers of children with cancer in the USA yet nothing has changed in prognosis or standard treatment protocol in over 50 years.  Parents routinely hear that there are no solutions for their child because the numbers aren’t great enough for investors and so they must watch on, helplessly, as their child dies a horrible death.  This is something we could do something about but the choice is made, year after year, to do nothing.

 

How does this translate into real experience?  You hear there’s nothing to be done after getting a gut-kicking, mind-blowing terminal diagnosis when not that long ago, everything was fine.  All of the sudden, my son Jack was limping and favoring one side and after waiting 5 days at the hospital for an MRI, it was determined he had diffuse intrinsic pontine glioma.  Inoperable, no chance of survival; I could take him home and make him comfortable, or try irradiation which might “buy us some time”.  Everything was about quality of whatever indeterminate amount of life was left for him.  He was only 3.  He was the love of my life.  Never have I experienced such an inescapable cloud of darkness.  Somehow it was my fault.  The doctors said it wasn’t; I asked them why there was nothing for him and they told me it was rare.  They told me “the numbers weren’t great enough for investors.”  So, on top of everything, my son’s life meant nothing to “the system.”  My rage was stifled into despair by the message that we just didn’t matter.

The rage exploded after I discovered that DIPG is one of the most common pediatric brain tumors, and that brain tumors are the leading cause of death in children with cancer, and DIPG is responsible for 80% of pediatric brain tumor deaths.  This year 2016 it was announced that now brain tumors have surpassed blood cancers in childhood cancer incidence, and that DIPG causes more deaths than any other kind of childhood cancer according to Scientific American.  So clearly, DIPG is not irrelevant.  It’s become obvious that, unlike the ER, saving lives is not the number one priority in our medical research system.  But instead, the families of these children, with doctors that have difficulty looking them in the eye, discover the lack of value that the system has for their children’s lives.  Don’t get me wrong; the doctors on the front lines are, in many cases, just as devasted to deliver the news as we are to receive it.  The few who have devoted their lives to finding solutions for the most deadly pediatric cancers are our modern crusaders.  Dr. Michelle Monje of Stanford University, conferring expert for H.Res.586, Dr. Mark Souweidane of Weill Cornell, Dr. Girish Dhall of CHLA, Dr. Mark Keiran of Boston Children’s, Dr. Mueller at UCSF and several more in the United States alone.  Their work needs more support.

I’m including here the last letter written to President Obama in September of 2016, imploring him one last time to consider supporting the issues brought forth in the 2016 H.Res.586, the National DIPG Awareness Resolution.  Though a House Resolution, it is the only legislation that raises awareness for the urgent need for more NCI research funding for pediatric and low-survival rate cancers.  I’m working with Congressman Steve Knight, R-CA-25, to re-introduce the bill in 2017.  You will find in him a great champion for our veterans and our children with cancer.  The introduction of HRes586 had the support of the Congressional Caucus for Childhood Cancer and was introduced in a bipartisan way.  We hope for the crucial awareness of the Trump Administration for the need to prioritize research for our children facing certain death.  They have been failed by the current Administration, which sought only to increase private sector incentives rather than take stock of how our tax-dollars for cancer research are spent.

I have been writing to President Obama for 4 years about DIPG, with some replies but no actual acknowledgement of the deadliest pediatric cancer.  This last letter was accompanied by a formal report on DIPG put together for both a medical and lay audience by Victoria Thomas, RN. MS.  I don’t like writing this, but more people need to know about the systematic neglect of pediatric cancer by the NCI and the current Administration, and how the children were kicked out of LaFayette Park in 2015 for CureFest with no apology from the President (this burden was left to the Secret Service!), children who had come from all corners of the world to our Nation’s Capital and to the White House as a symbol of hope and were completely discounted, many of them in treatment.  Still the White House refuses—refuses!—to “Go Gold” for Childhood Cancer.   The love of the American People will be unparalleled for you as President with absolute certainty of your word to us in caring for us all deeply, I strongly believe, if you would support the Childhood Cancer Awareness Movement.  Any opposing party’s claim to value children more than you do would be put to absolute shame where it belongs.  The 4% issue has been consistently ignored, even with the Moonshot Task Force with which I have personally been involved as a local leader, a last resort of hope for the Administration to acknowledge this issue and I was disappointed yet again.

Please, I implore you Mr. President-Elect and those members of your Staff who have a few minutes to spare for tens of thousands of American families who have had to endure, and who continue to endure, this life-decimating experience, to review this information and to resolve to be champions for these kids and their families.  I think I will have died have died and gone to heaven and so will millions of others.  I find myself exponentially encouraged by your supporters to contribute to the movement of Truth in America which you champion.  Thank you for your hard work and thank you for being Our President-Elect.  Thank you for bringing us hope for our children with DIPG and pediatric cancer, everywhere.

Respectfully yours,

Janet Demeter

President Jack’s Angels Foundation

32520 Wagon Wheel Rd.

Agua Dulce, CA 91390

  1. 661-977-3125
  2. 818-400-2724

jacksangels1@gmail.com

www.jacksangels.org

@JacksAngels1

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