Letter to the President

December 25, 2014
Copy of 2014 Childhood Cancer Awareness Month Proclamation

Copy of 2014 Childhood Cancer Awareness Month Proclamation

Dear President Obama and First Lady Michelle Obama,

Please accept my deepest thanks for your replies to my letter last summer about D.I.P.G. (diffuse intrinsic pontine glioma), and the darkness of the experience that so many families have endured, and continue to face each day.  I consider myself very fortunate, and believe strongly in the depth of your caring for the American People—all of us, and that you would respond in kind to each one of us if you could.  Thank you also for your kindness toward the memory of my son, Jack, and for the copy of this year’s Proclamation of Childhood Cancer Awareness Month, a great honor for his memory, and for our work with Jack’s Angels.  I remain eternally grateful to you for your use of the Executive Power in this way for children afflicted with cancer and their families.

I realize that you may be unable to address the specifics of my initial letter, that they may be issues of contention at this time.  I am aware that our U.S. Government may be beholden to forces seemingly beyond our control.  Even so, please know that I, and many others like me, believe in you, and in our Constitution.  I believe that ultimately there is good in everyone and every situation, given the proper attitude.  I support you in your decisions, that they are made for our greatest good, in your own best estimation as a human being, and the charge of the Presidency.  Many of us feel, and our numbers are growing, that any shadow of greed engulfing our country must needs be confronted first and foremost for our children’s sake.  We strongly insist upon the creation of an atmosphere in our medical system where our families are not told point blank that the lack of research into causes and conditions of any childhood cancer, let along the most deadly of them such as DIPG, is because their children’s lives are not important enough to investors.  We see this as a place in our system where there is no representative democracy in place—except for you, our Dear President, to do what you can to affect change.

Dr. Vargus had the compunction to tell a father who lost his daughter to DIPG, brain tumors being the leading cause of cancer-related death in children yet one of the least-funded areas of cancer research, that 4% would simply not be discussed in any time in the near future, but of course the NCI would be actively promoting private sector investment in childhood cancer research.  The 4% absolutely must be brought into the light.  I am aware that it’s most likely the proverbial can of worms, but again, it must be addressed first and foremost for our children’s sake.  They have no voice in our government, except for that which our elected officials are willing to take into consideration.  The Will of the People is beginning to lean more and more strongly toward this insistence if I may be so bold to say, and for all of the children I am watching die over this Holiday Season, and families suffering the same thing my own family continues to suffer, I must be so bold.  At the Summit for the Congressional Caucus for Childhood Cancer, I had to listen to the CMO of Janssen, and also Johnson and Johnson of course, make an argument of no substance for the statistical merit of the 4%.  Of course, his company creates billions in profits each year, math that needs no explanation.

Mr. President, I could not hope for a more gutsy and amazing President than you.  I am grateful to you for making the tough decisions for the benefit of the American People and our Way of Life.  Despite the awful political climates you often endure, many of us love you as History surely will.  Visionaries are often disliked because they are ahead of their time—but please know that there are many of us who appreciate you.   So, here it is, my final plea to you for a National DIPG Awareness Day.  For all of those kids this year with high profile cases, very few knew from the news coverage that they were DIPG.  All of them are dying if they have not yet died.  DIPG, as I’ve said before, is the perfect example of a childhood cancer that is marginalized as rare and therefore undeserving of research funding.  Yet, DIPG is responsible for most of the pediatric brain tumor deaths each year—those being the leading cause of cancer-related death in children.  The darkness of this disease has few parallels, and no survivors.  Something must be done; it is time—good for DIPG research, good for Childhood Cancer Awareness!  This is one thing that can be done to help affect change, hopefully without ruffling too many feathers.

The Honorable Assemblyman Scott Wilk of the State of California passed a resolution in 2014 declaring the last week in May, which is Brain Tumor Awareness Month, DIPG Awareness week.  Senators Feinstein and Boxer have both been very sympathetic to our cause, and one of your new 2015 Freshmen Congressman, Steve Knight; he worked with Assemblyman Scott Wilk to push our DIPG resolution through the State Senate, as he has been our State Senator.  I’m sharing with him also the letter to Congressmen McCaul and Van Hollen, a copy of which is enclosed with this letter, and encouraging him to join the Congressional Caucus for Childhood Cancer, and to support a DIPG Awareness Day to be declared nationally.

Thank you so very much for your consideration.  I realize you may have thousands of other pressing issues to attend to.  Please consider the experiences of these parents that I have included, if you can, or perhaps the First Lady may be able to do this.  Their holidays are cloaked in grief and despair, and will never be the same; life moves forward.  Please help us to make it brighter for them.

Most Respectfully Yours,

Janet Demeter

Hind M. and her son Ramy (Fall 2014)
“Sweet little flower of heavenly birth, you were too fair to bloom on earth.”
“Lamy” mommy and daddy miss you soooo much !!! No words could ever describe How sad and empty we feel, my brave baby I know you are up in heaven and I’ll always love you !!!!!!! I miss you when “the moon is here, the sun is gone ” when you took your last breath you took mine too, I don’t know if I’ll be able to smile ,to laugh , to be happy again !!! My angel you are in heaven , and I can’t wait to see you again !!!! I miss you !!!!!!!! —Hind Mabchour / Ramy Belfakih
Tracy Street (Fall 2014)
“…As I am forced to watch this tumor destroy my sons body, I am terrified of that vacant place that will eventually take his place in our home, school, and life. But I will always remain his mom and everything else in my heart and in my memory. I am told that eventually I will take steps to move from the old to “new” identity. ..but not at this time….maybe someday. He is still here and he needs me more than ever as he struggles to walk and talk. Nick and I began grieving the day he was diagnosed but that’s only the beginning. The way we live, love, sleep-or lack thereof, eat, work and worship have all been affected. We grieve for many things…for what we had, what we are losing, and for what we will never have. We are not asking for you to understand…We are just two parents trying to navigate through the unimaginable.”


Jeff Fisher (Fall 2014)
To: The President Obama & Congress
“”I’m calling you out””
This is no ice bucket challenge. But it is a challenge for you all to read this and make a difference in these kids lives. Don’t back down!!! Make it happen!!! If it was your kids you would do it. Myself and thousands of other parents and suffering kids want answers. Step up to the plate and swing the bat!!!
This letter is an attempt to bring awareness to an ongoing travesty many of you may not be aware of. It has been present for over thirty years and continues to compound each and every year. Like many other debacles of this type, its root cause is none other than greed. I’m fairly certain that whoever reads this has had their life impacted in one way or another by cancer. It could be directly, a family member or a friend. Pharmaceutical companies utilize 60% of their funding for cancer research and development on new drugs for adults. However, almost nothing is devoted to research and development for new treatments for children’s cancers.
The National Cancer Institute spends approximately 96% of its budget on adult cancer research and only 4% goes to children’s cancers. To put this into perspective about $254 million was spent on AIDS research in 2011. In that same year, about $584 million went to breast cancer. This only left $26.4 million for pediatric clinical trials. The reason; the adult cancer drugs are viewed as more profitable with less risk. Not only have they put a price tag on a certain age group, they have convinced me that a cure for cancer would never be released even if it was discovered. Once cured, how could they continue to profit from it? This brings me to my next point of contention. Many more adults are diagnosed with cancer than children. Therefore, these companies have a larger client base to profit from. If finding a cure was their goal, then their funding is completely backwards. In any scientific experiment you need a control (something untainted). Basically, these companies have decided to use adults that have been exposed to our environment, poor eating and drinking habits, lack of exercise, the toxins in food and water, tobacco, drugs and etcetera for decades. Doesn’t it make more sense to research a child with the same type of disease that hasn’t been exposed to all of those “possible” causes and be able to trace the source. The medical community has consistently released alerts over the years as to what has been linked to cancer when consumed. Have you noticed how many times those have been reversed?
It’s time WE force them to stop guessing. The drugs and procedures we have for adults with cancer work well enough to extend their life and even send it into remission in some cases. At the risk of sounding insensible; those people have at least had a chance to live and experience life to adulthood. Children diagnosed with cancer typically lose the battle much quicker than adults. The average death of a child with cancer is 8 years old. Their precious lives have been cut short by at least 69 years. And for what; a fat bank account, yachts, private jets, fancy cars, mansions, and status? People in masses asking for change have a louder voice than those standing alone. Please make an effort to right this wrong that has plagued our country and our planet for far too long.
In closing, I would like to introduce myself. My name is Jeff Fisher and I am the proud father and best friend of James Fisher. It’s because of him I was compelled to write this. He was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma at age 6. From the day he was born he has been a guiding light. It wasn’t until his diagnosis and treatment that I realized what true strength, courage, and patience was. He has never met a stranger for the simple fact that he exudes an aura of love and caring that is impossible to evade. Even at his weakest moments he can cut a smile that could part the heavens. He fights for life everyday at MD Anderson Houston and undergoes all of the poking, prodding, cutting and overall hell with the fortitude of a hardened soldier. I know he is suffering and doesn’t want to show it in an effort to ease the heart wrenching pain he sees on my face. However, months and months of treatments, surgeries and testing have weaken that resolve and he now has to stay more focused on surviving. Experiencing the ordeal of having to watch your son and best friend undergo the horrendous treatments is indescribable. Finding out that these treatment procedures have changed very little in over 20 years is inexcusable. I have made many close connections here with other parents and their children. Unfortunately, I have witnessed and shared in their grief when the battle has been lost. This is an awkward moment, because I am filled with both gratitude and rage. I am still grateful that the light of my life is still shining, but feel the fire inside me intensify each time a young soul is lost. Another young soul lost for a simple little noun and human weakness called GREED!
Hind M., Ramy (1 week after previous excerpt)
Hello ramy ! I can’t believe it has been two weeks since you left this earth ! It feels like decades and seconds in the same time, I still hear your laugh, I still smell your spongebob perfum everywhere ! It feels like you lived here for more than 3 years and 8 months with us , I’m proud of you son , I’m proud of you my hero , you fought so hard ! You touched so many people ! You are too beautiful and innocent for this earth ! You left this world but you’ll never leave my heart ! My hearth breaks to pieces whenever I look at your beautiful smile , whenever I realize that mommy won’t have another kiss , that I won’t hear :” mommy is my best friend ”
I lived the most wonderful years of life with you lamy, and you brought a happiness and joy to our life!
Good night ramy !! I love you so much baby !!!!! Mommy misses a lot !!!!
Tammi Curtis Carr 12/18/14
“I came home from Tommy’s holiday party to Chad asking me lots of questions. Questions that I don’t know why he’s asking. Mom, where’s heaven? How does God take us to heaven? Can I take my stuffed animals to heaven with me? Will you be going to heaven with me at the same time. I’m trying to answer him but needed to call Jason in for relief. I can take a lot but these are too hard for me right now…Losing it!”
Sarah Carr, Oct. 17 9:50am, Manchester, NH  DIPG Awareness for Family and Friends
I want to begin this post by stating that I pray for a cure for ALL cancers. I encourage and support spreading awareness to find a cure for any and all types of cancer. I know that cancer wreaks devastation and pain and fear on those it comes into contact with. I don’t wish that on anyone. My purpose is writing this post, is that I feel like this month I have literally been blinded by the pink. Even the landscapers around my office are wearing pink reflective vests. I’ve been asked twice in less than 24 hours if I would like to donate to breast cancer. I see pink on the football fields. All the employees at Dunkin’ Donuts are sporting pink shirts with pink ribbons. Pink, pink everywhere! It just makes me kind of sad. I wonder why I don’t even see a shred of this attention being given to Childhood Cancer Awareness. Why do we have to beg the Empire State Building to ‘Go Gold’. Why aren’t the football fields decked out with gold cleats in September? Why am I not being hounded and hit up to donate to Childhood Cancer every time I go through a drive-thru, or into a convenience store? I go into retail stores and see whole displays with cutesie phrases for Breast Cancer Awareness — bumper stickers, bracelets, tee shirts! It just seems so — unbalanced. Why can’t our children get even a 1/3 of that attention? Sorry for the rant, but I just had to get it off my chest.
Morgan Styles:  It’s all about saving the ta-tas….at least with breast cancer you have a fighting chance. DIPG and pediatric cancer doesn’t have a popular catchy slogan. The world we live in is so sad.
“We were told, ‘…there’s nothing we can do; we don’t know the cause, and we can only provide temporary relief with radiation; no chemotherapies have changed the terminal outcome…’, and yet, no one was taking data from us.  No samples, no testing, no forms, no nothing.  We got an enormous book from CureSearch of forms, that I think was standard for any child diagnosed at the hospital with some form of cancer, but nothing that addressed the urgent need for research, real research…  This is an UNACCEPTABLE REALITY.  All of our research hospitals across the country ought to have data programs for the families to have the opportunity to contribute their life history/lifestyle/genetic information; we could be actively looking for the “non-existent” common denominators of DIPG.   All research centers ought to have the advanced genetic testing/data-collaboration capability.  We have the technology; God knows the doctors would like to be able to do more.  And as more and more families suffer from DIPG, it won’t be long before the status quo’s unacceptability is too strong in our collective consciousness to ignore.  This is now my personal mission.”   –J. Demeter, Jack’s mom
November 2012, published January 2013 www.jacksangels.org

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