Sent to Los Angeles Times

Who will be its champion???

An Angel Story

Where to begin…  Well, it begins with an ending.  Two weeks before my son died, he was visited by angels.  “Two white ghosts” he called them, and though he’d been scared, they sure did make him laugh.  I assumed he was with his father or sister, hearing him laugh and chime in conversation, but upon realizing that my husband was outside, and my daughter playing in the adjacent room, I was concerned that Jack was alone—despite the obvious company.  Jack had begun to lose his balance and the use of his legs, one of the many symptoms of early progression of DIPG, and at that point, I wanted to make sure there was someone with him at all times, to the point that I’d called my mother to come stay with us to help.  I ran upstairs and looked, only to see Jack sitting there on the bed but no one else that I could see.  Jack said that he’d seen two white ghosts and that he’d been afraid, but they made funny faces to make him laugh.  They also told him he would have to go with them soon, that he had something important to do.  He didn’t want to go.  Alone in the room shortly thereafter, atmosphere still thick with intention, I spoke to them; “Not YET!”

We were afforded two more weeks with Jack before all of his bodily functions stopped, ending with respiratory failure.  This is the legacy of DIPG.  It continues daily, with hundreds of children in the United States, and thousands around the world.

Diffuse intrinsic pontine glioma, or DIPG, is the 2nd most common pediatric brain tumor, and is responsible for 80% of pediatric brain tumor deaths annually.  If you didn’t know, brain tumors are the leading cause of death in children diagnosed with cancer, yet it remains one of the least funded areas of cancer research.  I didn’t know any of this until Jack had died.  At diagnosis, we were made to feel as if we’d been struck by lightning.  “It’s so rare,” the doctors would say, “there’s no money for research,” citing statistics akin to the chance one sperm has of penetrating an egg, and others more blatantly saying, “the numbers aren’t great enough for investors.”  Translation?  Your child’s life has no value in and of itself to our system of medical research.  And so, you figure you’re the only ones; you’re a freak of nature, certainly not worthy of a task force investigation.  You accept it, but your stomach turns and churns in anger:  something is very wrong here.   Cancer is the leading cause of death in children after accidents in the United States, yet only 4% of the National Cancer Institute budget for research benefits pediatric research.

Jack’s diagnosis was in October 2011.  Unbeknownst to me at the time, there were 6 other children being treated for DIPG at that same hospital.  Since 2011, with the advent of social media, we in the DIPG community have discovered there are thousands of us, and I continue watching scores of people on a regular basis experience the torturous loss and tragedy, over and over and over again.  There is no way on this Earth that I can stand by and do nothing.  So, I began advocating for these kids and taking trips wearing angel wings with ribbons for DIPG children to Washington DC in 2014 for CureFest, the annual get-together for all childhood cancer foundations and advocates to rally for more consideration for our kids with cancer.  That year I discovered there was a huge resistance to mentioning DIPG.  I’ve written several letters to the President, with a few actually including a return letter and other things, but never any mention of DIPG.  Thus began my “just say it” campaign in 2015 that led to HRes586, the National DIPG Awareness Resolution.

HRes586 was introduced to the House of Representatives Energy and Commerce Committee on January 13, 2016, by Congressman Steve Knight (R-CA-25) the day after the Moonshot Initiative was introduced as part of the State of the Union Ceremonies January 12, 2016.  HRes586 designates the fourth week of May, which is Brain Tumor Awareness Month, as National DIPG Awareness Week in honor of the thousands of children who have faced, and continue to face death bravely and with uncompromising certainty as the result of this devastating disease.  Diffuse intrinsic pontine glioma, or “DIPG”, is not new to the medical community, but represents the limitations of our current science in the area of neurology, the brain and central nervous system, and in pediatric oncology, childhood cancer.  DIPG is perhaps the most aggressive cancer and most evasive of known treatment.  Unfortunately, treatment protocol and prognosis for the disease has changed little in the 50 years since Neil Armstrong’s daughter died of it in 1962.  With uncanny regularity, approximately 350 new cases present themselves each year in the United States alone, and with the same regularity they perish with a median survival time of 9 months with treatment.

After Jack died, I came to realize the fact that DIPG is not a “very rare brain tumor”, as depicted in the media, but the 2nd most common pediatric brain tumor, brain tumors being the leading cause of death in children with cancer.   That families are expected to just accept that their child’s life is worthless to research investors is the motivation for my activism for these kids and their families. HRes586, a simple Awareness Resolution, does something very powerful.  It asks for elevated consideration for low-survival rate cancers—urgency, and years of life lost—children, in the research grant process with NCI.  You’d think this would be common sense, but no matter how much we scream that there’s a house burning down, no one seems to care for fear of offending a bigger building.  DIPG is like death-row for kids.

Jack’s Angels hosted its 1st Annual “Relay for Jack!” on May 28, 2016 benefiting a special DIPG research project at the Children’s Cancer Therapy Development Institute in Beaverton, OR.  Most of the current DIPG research is funded by parents and foundations concerned with DIPG.  Though a drop in the bucket, the results and implications of this research already have widespread applications in oncology.   Perhaps not immediately profitable, the potential return on investment in DIPG research is priceless.   Other DIPG organizations across the United States celebrated the yet unobserved National DIPG Awareness Week (it needs the approval of the House) with their annual events in support of the movement.  At Relay for Jack, May 28 2016, Jack’s Angels was awarded a Certificate of Special Congressional Recognition for creating the event and for promoting awareness for the urgent need for pediatric brain tumor research.

Right now in our Southern California Region we call home, there are several children awaiting death by DIPG, biding their time, working through bucket lists, or just plain trying to enjoy the day one day at a time, if they still can.  (Katie King has hours to live.  Visit Katherine the Brave on facebook.  Katie’s mom, Jaime, is determined to publicly record Katie’s demise so that the public will know what is happening.)  Parents are ripping their psyches to shreds trying to find that one thing that points to a cause…physical, moral, spiritual…because they “know” it’s there, somewhere, just too far out of reach for them to make a difference for their child.  This is unnecessary torture, and a picture of 50 years of neglect.

One thing is absolutely certain:  until we are willing to care, until we are willing to hurt—because sometimes it hurts to care, until we are willing to name the very bad thing and decide to do something about it, roll-up our sleeves and put a hand in for a solution, nothing will change and we will not cure cancer.  If we truly want to cure cancer, we will attend to the very worst ones, to save our children most needing of a cure instead of finding more excuses to turn a blind eye, and finally be on the pathway to cure all cancer.  Los Angeles, City of Angels, I dare you, I double-dare you to live up to your name, and please help.  Help us get the word out about HRes586, help put childhood cancer awareness and DIPG—the deadliest of all cancers—on the National Stage where it belongs, and the angels message will be complete.

The Los Angeles Regional Moonshot Taskforce Summit will be Wednesday, June 29, 2016 at The Master’s College in Santa Clarita from 9am-1pm.  I strongly recommend this brainstorming event to anyone interested in seeing the day of a cure to come, industry professionals, doctors, caregivers, advocates, parents of children with cancer, concerned citizens.  For more information, visit:  http://bit.ly/la-moonshot,  call 661-977-3125, or email jacksangels1@gmail.com.

#KatherinetheBrave  #HRes586  #JacksAngels

Janet Demeter

Jack’s Angels Foundation

32520 Wagon Wheel Rd.

Santa Clarita, CA 91390

661-977-3125 office, 818-400-2724 mobile

Jacksangels1@gmail.com

@JacksAngels1

www.jacksangels.org

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