The photographs you see throughout this posting are of my granddaughter Piper. She\u2019s a cutie, isn\u2019t she? My story begins with her because she can no longer tell it herself. You see, Piper passed away in 2018\u2026and on that day the world for everyone I love changed forever. She took her final breath in her mother\u2019s arms; two months shy of her fifth birthday. <\/p>\n\n\n\n
When Piper was three years old, she suddenly began slurring her words\u2026which for this child was noticeable. She was amazingly bright and interested in literally everything under the sun\u2026from space flight to Disney princesses\u2026and could discuss them all endlessly! Piper had begun to read her own children\u2019s books at two, and she was a little unusual in other ways as well. If you took her fishing for instance\u2026she would play with a handful of worms, or pick up a squirming crayfish and ask things like what do they eat? Do they talk like me? Do they pee like me? If she was playing doctor (one of her favorites) she would pronounce with due gravity, things like \u201cI think the problem is in your bones Papa\u2026they\u2019re kind of creaky\u201d.<\/p>\n\n\n\n
Well\u2026the slurring was just the beginning of a sixteen-month battle. As the weeks rolled by it would grow more and more difficult to insert a little normalcy into the life of this effervescent child. Picture trying to explain to a four-year old why her right leg no longer holds her up\u2026or why her left eye is blurred and no longer responds. When her right arm and right hand began to weaken and curl\u2026she dealt with it in typical Piper fashion\u2026by writing and coloring with her left hand. Pass the purple paint please\u2026and are we out of glitter again?<\/p>\n\n\n\n
The villain in this story is called DIPG (Diffuse Intrinsic Pontine Glioma). It is a universally deadly pediatric brain tumor. The average lifespan of a DIPG child in this land of miracle medicines, is nine months. Its diagnosis is a death sentence for these children not because DIPG is uncurbable\u2026but because it is rare and the resources to battle it are needed to fight other more common cancers\u2026most of them affecting adults. Only a tiny fraction of all cancer funding goes toward pediatric cancers\u2026and because it is rare, DIPG gets only a tiny fraction of that!<\/p>\n\n\n\n
You see\u2026big pharmaceutical companies are interested in big paydays. When the total number of DIPG kids is only 200-300 per year\u2026there is no big payoff at the end of the tunnel. Research and development is prohibitively expensive. Big pharma would argue that they have no choice but to chase the payoff dollars because that is what funds the research\u2026and there is some logic in that. As heartless as it sounds, saving thousands of leukemia patients or breast cancer patients, or prostate cancer patients makes more sense than spending hard to acquire R&D treasure on a comparative handful of kids.<\/p>\n\n\n\n
That is where you would think that big government would step in a take up the slack. Wrong! Big government has the exact same outlook\u2026and for the same reasons. Taxpayers want to know that their government is being responsible with their dollars\u2026and spending confiscated treasure on expensive research that will only help a few hundred people is a hard sell on capitol hill. Mention DIPG to some of these well-traveled politicians, and suddenly your calls and text messages don\u2019t get returned. If you are a politician and you think I\u2019m talking about you\u2026you are probably right.<\/p>\n\n\n\n
Almost as disappointing is the reaction of famous children\u2019s research hospitals (I won\u2019t name them here\u2026but you know who they are). DIPG parents would tell you if asked\u2026that these well-advertised organizations are compassionate and flawlessly polite\u2026but offer precious little in real support for DIPG kids and their families. They are universally in search of happy endings (makes for great ads) and toddlers in body-bags is about as far from a happy ending as it gets. The conversation probably goes something like this; \u201cYou might as well stay close to home because there is nothing we can do for you that your local hospital can\u2019t\u201d.<\/p>\n\n\n\n
So, let me quickly tell you about another cute little girl. Her name was Karen and her dad was a very brave\u2026and very famous\u2026astronaut. Karen Armstrong died of DIPG when she was two years old, and it broke her fathers\u2019 heart. It was 1962, a few years before Neil Armstrong would take his famous \u2018giant step for mankind\u2019. His precious baby Karen was never far from Neil\u2019s thoughts, and he named a small crater near the landing site on the moon for her.<\/p>\n\n\n\n
The reason Karen Armstrong is integral to this story, is because the medical treatments she submitted to in her short battle with DIPG\u2026is almost exactly what they treated my Piper with over fifty years later! The 1962 conversation went something like this; \u201cI\u2019m sorry Mr. and Mrs. Armstrong\u2026we can\u2019t save your child. We propose targeted radiation to temporarily shrink the tumor. If the treatment works, we might be able give the family a few months to say goodbye\u201d.<\/p>\n\n\n\n
So, let me ask you America\u2026can\u2019t we do better than that? Will we be having an identical conversation with DIPG parents fifty years from now?<\/p>\n\n\n\n
The money Congress spent JUST THIS WEEK on under-the-radar pork added to the COVID-19 economic relief bill (remodeling dollars for the Kennedy Center\u2026$300 million in funding for PBS\u2026 $1 billion for taxpayer funded cell phones\u2026federally funded retirement plans for community newspapers\u2026new emissions standards for airlines\u2026etc. etc. etc.) will no doubt cost taxpayers considerably more than a researched and developed cure for DIPG. In the end this battle isn\u2019t about cost\u2026it\u2019s about compassion, commitment, and transparent responsibility!<\/p>\n\n\n\n
I\u2019ve listed some of the DIPG sites\/links etc. below\u2026and they would all love to hear from you. Another effective way to help these children, is to take the time to contact your elected representatives and demand action. A hard truth is\u2026without political intersession, we are not likely to find that wonderful light at the end of the tunnel. It\u2019s too bad I guess, that DIPG parents are too strapped with a mountain of medical bills, to contribute to campaigns. Enter PBS and Kennedy Center patrons\u2026<\/p>\n\n\n\n
And finally\u2026the reason this story is important to you personally. The next parent or grandparent who hears \u201cI\u2019m sorry, we can\u2019t save your child\u201d may well be you, or someone you know and love. DIPG doesn\u2019t care about your child\u2019s race, wealth, religion, or connections. It\u2019s an equal opportunity killer. Take if from this grandfather\u2026the fact that you may have never heard of it, doesn\u2019t make the tears any less bitter. <\/p>\n\n\n\n
I love you Pip\u2026<\/p>\n\n\n\n
Papa<\/p>\n\n\n\n