It’s Hard To Fight When The Fight Ain’t Fair

Hello there! 🙂 Below is  a letter that I sent out a few weeks ago to some drug companies. As many of you are aware, my family and I have been fighting very hard for a chance to try a new cancer medication called PDL1 or PD1 blockers. Unfortunately, you have to be at least 18 to be included in the trial. Pediatric trials for the drug don’t start for some time; time that I do not have.

Please help spread the word! Appreciated.

 

It’s hard to fight when the fight ain’t fair

But we’re getting stronger now

Finding things they never found

 

Dear Merck/Genentech/Bristol Myers,

My name is Nathalie Traller and I am 15 years old. I have been living with the rare cancer ASPS for almost 2 years. Above is an excerpt from a song called ‘Change’ by one of my favorite artists, Taylor Swift. This song has a lot of meaning and power to me, because I can find how my own life is represented in its lyrics. Right now, some exciting and amazing medicines for cancer are being created and tested. New things are being discovered, and new approaches are popping up, ones no one has tried before. We’ve gained an edge over cancer with creative and different approaches. One of these medicines is PD1 or PDL1, a drug that could help save my life…if I had a chance to try it in time. There are currently many trials with this promising new drug, and I meet all the criteria except for one…I’m not 18. There’s isn’t really a clear reason for this restriction, as often teenagers can tolerate the effects of the drug just as well and even better, than some of the older patients included in the trial. I’m 15, with opportunities ahead of me, trying to grow up and find my place in the world. Should teens be cut off from possible life saving meds because of their age? Pediatric cancer is a real, devastating issue today, and kids who have their whole lives in front of them are being denied the very thing that could keep them alive. I’m fighting not just for myself, but for the many who have struggled with this dilemma. When I walk into the halls of Sunset High School, I feel the excitement of opportunity, accomplishment, and discovering who you are. There are clubs for just about every kind of activity you could imagine. There are announcements for dances, concerts, basketball games, and track meets. There are teachers who will encourage you to take it one step further, to pursue your dreams. I so badly want to take part in all these activities; to get out and experience life.

I love writing, and art relaxes me in a way few things can. Swimming and being outside are essentials for me, and I am fascinated by animals. But most of all, I dream of becoming a pediatric nurse, inspired by the many who have taken care of me in a scary, unfamiliar situation. I’m excited to see where I will go in my life.

 

You can walk away, say we don’t need this

But there’s something in your eyes, saying 

WE CAN BEAT THIS

 

But there are obstacles beyond my control, that get in the way of me having a bright, successful future. Cancer impacts my life in ways I would have never imagined. I dread getting up in the morning, as I’m immediately faced with severe nausea that we haven’t found a single antidote for. My parents have had to get used to handing me an upchuck bag as my face reddens. Strange and scary pains pop up, sometimes resulting in midnight trips to the ER and hospital visits. I take oral painkillers daily, that if not properly timed and monitored, can be deadly. The stress of keeping these pills down, despite my churning stomach, grips me like a sharp claw. And I have been forced to stop playing soccer and many physical activities, due to the unresponsive nerves and weakness in my legs from past treatments. Though I take every day as a gift, and appreciate what I am able to do, these challenges are very tough to ignore in my daily life. They remind me that I don’t have forever, and that pediatric trials for PD1 are still a ways away, taking place in September. Unfortunately, I don’t have that kind of time. The cancer grows and causes damage while we sit here and wait.

So the request I make is this: Please give me and other kids battling cancer a chance at life. The chance to be something more than a victim of a greedy disease. The chance to go somewhere, be someone, and make a difference in this world. As I face each day with cancer, I remind myself of the lyrics at the end of ‘Change’.

 

Tonight we’ll stand, get off our knees

Fight for what we’ve worked for all these years

And the battle was long 

It’s the FIGHT OF OUR LIVES

But we’ll stand up champions tonight

 

Sincerely,

Nathalie Traller

17 thoughts on “It’s Hard To Fight When The Fight Ain’t Fair

  1. So proud to know you, dear Nathalie. You were a pretty awesome kid back in 5th grade and it seems like you just keep getting better and more beautiful as a person. I continue to fight with you and your family so we can keep watching you grow into the amazing young woman we know you to be.

  2. We are praying for You Nathalie. Keep fighting. We will share your post in the hopes it will touch the heart of someone who can influence those who could give you a better fighting chance.

  3. Awesome blog, Nathalie! A great letter to the drug companies. I hope they are listening, and caring and responding to teenagers like you that deserve a chance to try life saving medicines!
    I’m with you in the fight every step of the way! Your perseverance and courage amazes me.

  4. Well put. I am curious to know if you have received any response from the letter and other communications to the drug companies? Your messages to them must touch them at their core being.

  5. Wow, Nathalie – your writing is absolutely beautiful. Your courage lights something in everyone you reach, and I hope with all of my heart that the companies you are writing to reach back. You go, girl! You, Nathalie, DEFINE ‘standing up a champion’!

  6. Hi Nathalie. We have never met, but I did want to tell you that I stopped by. I also wanted you to know that I care about you! When you are feeling alone or scared, remember, you have people lined up believing in your inner strength and your message. Let that energy in and take as much as you need. My hope is that TODAY is the day that a drug company steps up and gives you access to their newest and greatest PD-1 medicine. I believe it will happen! Much love to you, and your family,
    Kim

  7. Nathalie, we will be praying for God to ‘touch and soften the hearts’ of these drug companies and you will be in our thoughts and prayers. Stay strong and never, ever give up!

  8. Dear Nathalie,
    My name is Bonni Hess. I am the mother of a now 32 year old daughter who has been courageously fighting ASPS for the past almost 13 years since being diagnosed with this extremely rare and very challenging disease at age 19 in July 2001. My daughter’s name is Brittany and during her almost 13 year battle she has undergone 23 surgeries/ablations/radiosurgeries and participated in 3 clinical trials. VERY thankfully, her third and most recent clinical trial which is testing the promising new Tyrosine Kinase Inhibitor(TKI) targeted therapy drug called Cediranib has now provided her with five years of disease stability with no new tumors and dramatic shrinkage and disappearance of her previous innumerous and widely disseminated ASPS mets. Because of the extreme rarity of ASPS, several years ago I, my husband, and a couple of other parents of ASPS patients helped to establish an international organization and Web site for ASPS patients and their families to access and share invaluable researched and anecdotal ASPS treatment information as well as strengthening support and encouragement The Web site is CureASPS.org and I strongly enocourage and urge you and/or your parents to visit the site and register and participate on it. It was through information shared on the CureASPS.org Discussion Board by a young man from England that we first heard/learned about Cediranib, which at that time Brittany’s oncologists at Seattle Cancer Care Alliance were not even familar with.
    I am so very sorry for your ASPS diagnosis dear Nathalie and my heart breaks for what I know far too well that you and your parents are going through. You sound like a very strong and courageous young woman with a very positive and determined attitude which is so very important in this difficult battle, and which reminds me so much of our precious Brittany. You, also like Brittany, have a special gift for writing and expressing yourself so beautifully, and reaching out to touch and inspire other Lives. It would be wonderful to be able to meet you and your parents someday since you Live in Portland and we Live in the Seattle area so if you are ever in the Seattle area please let me know.
    Please know that you and your family are not alone in this battle with this insidious disease. I and the other ASPS Community members on the CureASPS.org Web site and Discussion Board share this battle with you and are available to help you in any way that we can with shared information, support, and special caring.
    Take care dear Nathalie, visit the CureASPS.org site when your time allows, feel free to contact me by e-mail at BonniHess@aol.com, and know that my most caring thoughts and very best wishes are with you and your family.
    Reaching out to share special hugs, deepest caring, healing wishes, warm friendship, and continued Hope,
    Bonni Hess

  9. Natalie

    So when can I take u to the nike employee store sis 🙂 I follow u and your family on twitter and can’t thank you enough for giving me strength everyday to fight this greedy greedy disease ( great writers write from pure emotion and u my lil sis are Shakespearean ) anyways we are in this together , the fight is far from over and I look forward to hitting up the nike store with ya and giving u a giant hug .

  10. Stay strong, Natalie! You are amazing. I’m printing and sending your letters to the drug companies now. Never ever give up!
    Love,
    Julia (a fellow teenager and TS fan!)

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