Letter to Speaker Pelosi, 12/22/2020

What’s in a day?  Everything.  For us, absolutely everything.

Madam Speaker,

After 5 years of advocating for the National DIPG Awareness Resolution I’ve discovered that for the third introduction in 2019, the lead sponsor never intended to fight for this bill, or these kids, to be considered with respect to the current legislative protocol regarding exceptions for commemoratives.  From what I gathered from her staff, from our request she introduced it for my Congressman who did not return in 2019.  We realize the restriction on commemoratives in the House of Representatives is due to excessive overuse of vanity days in the 1990s, and that there has been one exception for a commemorative resolution for Patriots Day, with this same protocol that is on Leader Hoyer’s website, “A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.”  Bereavement, condemnable neglect of childhood cancer research funding (due to lack of awareness, hence the resolution), and the calling upon government and the private sector to elevate consideration for children and the dying with regard to medical research funding, is the qualification here for H. Res. 114 that one might recognize.

The idea that one exception for children fighting the deadliest cancer known to mankind would “Open the floodgates”, the Congresswoman said, and I gathered, echoed your position––is an emotional expectation rather than a reasonable one.  (I had been afforded my very first opportunity to hear from her directly just 2 weeks ago, after 2 years of requests.) The thought that, as there is this opportunity right here, right now, for you and the House to facilitate a shift in attention and awareness to the largely unseen and rampant killer of children, DIPG–a world of suffering and needs unmet–and that you will not do it, is incongruous with the image you present and the accolades you accept as being a great champion for the voiceless and the downtrodden.  You are in fact perpetuating the very problem for which the Resolution could help provide a solution.  You are insisting that these children are expendable, that their deaths are acceptable, and that we are indeed the country that looks the other way.

For myself, this process began when I was shown compassion by CA State Assemblyman Scott Wilk in early 2014 when he learned of my son Jack’s story from a foundation leaflet at a Chamber of Commerce event.  He insisted the CA Legislature “do something” for this, producing the 2014 DIPG Awareness Resolution in the State of California.  Now my State Senator, he worked with Assemblywoman Christy Smith to pass the 2020 resolution despite Covid-19, knowing that DIPG doesn’t take a vacation from killing children, and to be supportive of this national movement.  But the point is, this compassion and concern is what gave me hope in our federal government.  When things appear on the national stage, consciousness changes, our world changes.  Before that 2014 event I had always wanted a national day for DIPG–such a horrific and unknown quantity sneaks up on families and destroys them…when we could do more…people just don’t know. Senator Wilk gave me hope that it could become a reality.

And so did your senior staff when you were Minority Leader.  The one I met with was truly compassionate and sympathetic, and seemed to indicate that our chances of success with the resolution might be better when the Democrats had the majority. With your office, this proved to be far from the truth.  The staff still generously made appointments with us but never with you, even with constituent scientists and distinguished industry leaders, and patients willing and able to speak to the experience.  That was terrible, and embarrassing–more for your position as Representative for CA-12 than anything or anyone else.

Instead of the introducing sponsor’s leading with a support letter to House Leadership to consider this resolution–to which scores of other Members of Congress expressed interest and hope in signing, I was put off for months until I was told that she simply would not lead, but would sign such a letter if another member led with it.  Her staff knew very well that only the introducing sponsor can lead with such a letter, but I continued meeting with others to discover that conclusion over time.  Of course until it was too late.  “Just get more cosponsors” her staff would say to me, “build a national coalition.”  That was a tall order for a bereaved parent amid a community of other bereaved parents who are definitely NOT inclined to hopeful advocacy.  But to date we managed to get 4 seats shy of a House Majority aware of the urgency of DIPG, which speaks volumes on its own.

We called H. Res. 114 our Moonshot4Kids–harkening to the original moonshot, when America had a clear goal.  It was time sensitive.  AND we had the desire to out-do the Russians.  With strong national resolve we put men on the moon and brought them home safely–with 1960s technology!–and I might add a crew of brilliant mathematicians–all black women.  I wouldn’t have known that without having seen “Hidden Figures.”  Equally imperative to beating the Russians is the need to save these children’s lives.  That should be just as urgent.  These innocent kids routinely suffer this horrific entombment in an increasingly paralyzed body, retaining cognitive awareness, until respiration ceases.  While suffering the side effects of insane medications.  While getting turned down from the few experiments open.  Phase one experiments.  Because no one thinks our children are a worthy investment incentive.  That’s the country we are today; that is who we are if we are judged by our actions or lack of actions, as a society.  We need to change that.  But we can’t change unless PEOPLE KNOW.  Awareness is key.  What’s in a day?  Everything.  For us, absolutely everything.

Most people don’t realize that brain cancer is the most prevalent and deadly form of childhood cancer. They look at kids with leukemia and say, oh, 80% of children survive cancer. Forty years ago it was a death sentence but we targeted it. And yes, thank God adult leukemia research was successfully translated for certain childhood leukemias, with some having a 90% outcome of 5-year survival. But it’s far from the reality most with childhood cancer experience. Most childhood cancers do not have effective therapies or treatments, simply because our investment culture and research industry is not designed to accommodate them. Nowhere is this neglect and the horrors that children are expected to endure more powerfully demonstrated than with DIPG. There is nowhere in the world that you can go to save your child because, “the numbers aren’t great enough for investors” in the wealthiest country in the world.

And so, you may still just let this bill die, as intended all along.  But we aren’t going away, or disappearing into the background.  I might, personally, because I may not be capable anymore of advocacy, and my family is weary of it.  But more people are aware, and more people are going to know what happened.  Most of us are cynical about interacting with their government for this very reason.  I didn’t want to believe it.  And I still hope that I am wrong in my assessment due to the fact that I’ve had no direct communication with you–I can only infer by the scraps of information I’ve received here and there.  I truly appreciate many things about you and your leadership, but this experience has dashed all of my expectations.  I hope to be wrong, and that you do have a heart and will consider letting the House decide if DIPG and the neglect of pediatric cancer research funding is a worthy exception to too many hot-dog or vanity days.  Please; these kids want to believe in you.  They are facing an early death.  For Christmas!  Please.

Please consider Jace Ward, a young man advocating for all the little children who cannot speak out, while facing his own uncertain future; and Howard Salmon, witnessing the end-stages of his son Liam’s fighting DIPG, and the young mother Cassie Diaz, also witnessing her son Jayce struggle to stay alive.

Thank you.

Janet Demeter, Sophie and Jack’s mom

Agua Dulce, CA

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