Letter to Congressmen McCaul and Van Hollen

Dear Congressman McCaul,                                                                    December 13, 2014

I know that September was a busy month with the Caucus for Childhood Cancer, and you probably don’t remember me.  I would like to extend my sincere thanks for the friendly and accommodating atmosphere in your office, when I had initially called to schedule an appointment.  Your aide Any Taylor is exemplary in his demeanor and has been most helpful, from that point and throughout my visit.  Jack’s Angels Foundation raises awareness for DIPG, responsible for most of the pediatric brain tumor deaths each year, and of course has no survivors, and no change to that effect in over 30 years of clinical record.

When we first experienced DIPG in our lives, it was such a dark place I became determined, fiercely determined, that I would find the good in this happening to my family.  That somehow, somewhere, I would be an agent for change.  When my son was diagnosed, no one knew what it was, and there was an aura of horror and blackness around the realization of what it was—whether it was from friends, or the doctors.  What made it especially paralyzing was the message that my son’s life wasn’t as important as profit margins to investors.  No matter where I turned to ask the question about the lack of research, this was the response.  I thought it was a rare brain tumor, and found out it was a fairly common one after he died.  The rare label, when multiplied, shuts people up and makes them feel insignificant.

I appreciate so much your work with the Caucus, and also your collaboration with the parents in supporting legislation for our kids.  I appreciated very much the freedom—despite the awkwardness of it—to be able to hold up my sign and wear the ribbons for all the kids who died on my angel wings, at the Summit.  These kids don’t have anyone to speak for them.  Lauren Hill has done the world a heap of good speaking out, but no one can keep in mind that she had DIPG.  There have been several high-profile cases lately, but the DIPG name is not sticking.  I don’t expect it to solve the problem, but I do think it would be an incredible boost to have a DIPG Awareness Day declared nationally.  People need to know what it is.  It needs to come out of the closet.  The pain of the experience is destroying many people’s lives—and feeling so alone and insignificant, worthless, in effect, has been a big part of it.

I’m writing a similar letter to Christopher Van Hollen, and Senators Feinstein and Boxer, as we are a California organization.  Both Senators have been sympathetic to our cause.  The President is receiving another such letter from me—he did write back and sent me a copy of 2014 Proclamation of Childhood Cancer Awareness Month—which I appreciated greatly, but of course he would not address any of the specifics to which I referred.  They need to be addressed.  The 4% needs to be addressed.  We don’t need a CMO of a huge pharmaceutical company giving us an argument as to why that number is “OK”, a company that makes billions in profits each year, math that needs no explanation.  The system needs to change and it needs to start with our kids.  Frequency of incidence, numbers of cumulative deaths, percentage of the annual deaths from cancer, etc…need to be factors in the decision-making process concerning the funding of research.  Certainly the fact that these are our children, that these are the most baffling cancers, should be the most important factor, one would think, but in actuality, it doesn’t come close.

I appreciate so much your taking the time to read this.  I am certain you have hundreds of pressing issues to consider at this time, so I thank you, on behalf of my son and other DIPG children who have passed.  Just a little extra encouragement, buzz, what have you, towards a DIPG Awareness Day would, or could, make all the difference—and be so greatly appreciated.  I am including some excerpts of the writings of a few parents from recent weeks.  These are parents from all over the country.  Some are angry, some of beside themselves with grief; some are hiding in fear awaiting the dreaded “progression” phase of the disease where the child declines quickly and dies.  There are hundreds more at the present time enduring this pain.  I consider myself and my family lucky for moving forward relatively healthy in mind for ourselves, and one another.  I’ve watched this, and continue to watch this, tear people’s lives apart.  I’ve only been in it a couple years.  My son died July 30, 2012.  We, like all other DIPG parents, had to simply watch him die in a short period of time, helpless, and hopeless.

Please look for Freshman Congressman Steve Knight of California as a wonderful collaborator and a man who works very hard as a public servant.  I will be encouraging him to join the Caucus.  Our State Assemblyman Scott Wilk passed, with strong support in the Assembly and in the Senate from Steve Knight, a resolution declaring a National DIPG Awareness Week in California, May 25-31, as May is Brain Tumor Awareness Month.  He encouraged me to investigate such resolutions in other State Legislatures, that sometimes a national awareness day can be coordinated in this way.  Any help looking into this possibility would be greatly appreciated.

Thank you again, Congressman McCaul, so much for your work in service of the American people, and of course the Great State of Texas.  I thank you the most for fighting for our most vulnerable and precious citizens, our children.  And—please forward my utmost gratitude to your wife.  I enjoyed very much hearing about her work when I visited Curefest.  Perhaps you can share the angel I’m sending to Andy Taylor with her.

Respectfully yours,

Janet Demeter

(The following are personal accounts for which I have permission to share)

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