Change Starts With A Whisper

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There aren’t a lot of issues that I get really fired up about, and if there’s one thing I hate, it’s being in the spotlight with all eyes on me. I’m a naturally shy and quiet person, so usually lots of attention makes me squirm. But the situation I’m about to describe is one that I can willingly shrug my shyness off for and be passionate about. That’s because this could affect the future, cancer research development, and children’s lives, including my own.

It made me so frustrated, shocked, and angry when I found out that for every dollar given to the National Cancer Institute, only 4 cents goes towards children’s research. I found myself realizing why there were so little treatment options besides the standard chemotherapy or radiation regimen. Put simply, there just isn’t enough money or time spent on new research for pediatric cancers!

I’ll be honest and say that before I was diagnosed, I didn’t know anything at all about this situation. I was blind to the struggle that young patients with rare cancers were having to go through. And since children only make up a small percentage of those diagnosed with the disease, their voice is pretty difficult to be heard.

Very few know the extreme difficulties these patients and their parents are having to face. But now, as a fighter of ASPS for over 2 years now,…I know. And I’m going to do everything I can to pull back the curtain of silence on the world of pediatric cancer. Lack of knowledge has been stifling its voice for way too many years now. So today, I’m writing this post to attempt to shout out awareness and make the reality of being a pediatric cancer patient known. I want to speak not just for myself but for all kids battling cancer, especially the brave, inspiring, and amazing ones who have died fighting against these impossible odds.

Because I’ve been thrown into a complicated world of clinical trials and experimental drugs, I find it hard to comprehend the rules of this system we have created ourselves. When a company denies a patient of a medicine that may be their only chance of survival, it’s near impossible to side with their decision’s reason. Yet this has happened time and time again. When it comes to children’s lives, I believe they should be allowed to have access to the few treatments that are available to them. Of course, I’m very biased, but this appears to me like an ethical decision.

So this is the dilemma my family and I are in now. We have asked multiple times for Compassionate Use of PD1/PDL1, a promising drug for my highly rare cancer, from Merck, Genentech, Bristol Meyers-Sqibb. Why so desperate? Because we’re constantly reminded of the time ticking by. With every morning that I wake up in excruciating pain, every time I feel sick to my stomach, every time we go through a tough scan. We’re there, staring it directly in the face and watching the terrible things cancer can do. And we’re not the only ones, because many other families are going through the exact same stress. But for each time we’ve asked, we’ve also been denied, coming out empty handed. With the help of friends: We’ve made pleas with both homemade and professional videos. We’ve written tons of amazing letters to each of the drug companies. We’ve been on TV for several local stations, explaining our story. We’ve communicated with congress members, drug company employees, anyone you can think of. We’ve blown up social media with Facebook, Instagram, & Twitter. There are so many amazing people supporting us, working as hard as they can to try and make a difference.

Yet with all of these efforts, the companies we’ve cried out to have met us with little to no response, all because of “set in stone” rules. We have to realize that the people in the companies aren’t the enemy. We’re fighting against a faulty system of clinical trials that needs to be rethought and adjusted.

It’s frustrating. Discouraging. Unfair. There’s been a lot of stress, tears, and pain. We’re tired but we’re not giving up. I have hope for pediatric cancer research, and I have hope for myself. I’m stubborn, determined, and have grown stronger through all of this. I don’t throw in the towel easily. Right now, though it seems like we’re one tiny fish in a gigantic ocean, one small voice in a crowd of millions, I will continue to fight with the hope of making a difference. After all, change begins with a whisper.

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7 thoughts on “Change Starts With A Whisper

  1. Please send this along to the American Academy of Pediatrics, in whatever way is most effective. I think coming directly from Nathalie is the best way. They do have a Twitter account, and they are located in Elk Grove, Illinois. If this doesn’t get to them, nothing will.

  2. Thank you dear Nathalie for taking time to share your thoughts with us. Once again, your words ring so true and are filled from the first sentence to the last with your direct testimony of what it really means to be a teen with cancer.
    I have been a fan of the late Jim Valvano from his tenure as head basketball coach at NC State. His team did the impossible in 1983 and defeated Phi Slamma Jamma (also know as the University of Houston) in the NCAA Basketball Tournament. Jim had a team of no names that year except for Thurl Bailey and Houston boasted Clyde Drexler and Hakeem Olajuwon. After the Tournament was over and the confetti was swept off the court, Coach V said this: “Every single day in every walk of life, ordinary people do extraordinary things.” Keep being extraordinary!

  3. Loved your passionate post, Nathalie! Keep writing and sharing as only you can. I, too, am shocked at how little is spent on pediatric cancer research. After you were diagnosed, I would see an article or TV ad about Alzheimer’s research or a common adult cancer and I would think, “But what about the children dying from rare cancers? Their whole life is ahead of them! Where is their billion dollar fundraising campaign? Who is doing research to cure their cancers?”
    Let me know how I can help. Who to write to…how to stand up and be a voice with you. Keep fighting and sharing! Much love, Grandma

  4. Nathalie, I have no words to describe my feelings right now.. so many emotions going on. You are the strongest and wisest 15 year old I know.. and I will probably ever know. You bring to us so much joy and faith.. and remind us that we all can make a change somehow. I am sure the plans God has for you are amazing..He does not give us more than we can handle. Thank you for your words. Love you 🙂

  5. Waking up in the 808 , bout to head to do my scans and tests I’m really scared but then I get to read a great writer named Nathalie , her whispers give me strength .I wish I could be there for u like u are for me on a daily basis . Your whispers are heard , now it’s up to us to turn them into shouts . And we will . When one person whispers it’s hard to hear but we are more then one sis . Got nothing but love for you , and don’t forget the nike store awaits us .

  6. Nathalie,
    I want to thank you for what you are doing in speaking out for research to treat childhood cancers. Your story is so inspiring.
    My family also attends BFS church. Our daughter (Mady, 4) is a survivor of a rare and aggressive pediatric cancer – a malignant rhabdoid tumor. She was also treated at Doernbecher Children’s Hospital. Because her cancer was rare with few survivors and affects children almost exclusively, the plan for treatment was somewhat uncharted. We are so thankful that the treatment worked and she has been cancer free for 2.5 years. Those years have been such a gift.
    Like you, I am shocked with how little funding pediatric cancer research receives. Most people are unaware, and I am so thankful that you are speaking out.
    I am praying that you will receive the treatment that you have been denied. I am also praying for God’s strength, encouragement and comfort to be with you always.

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