Pediatric Cancer: Take a Stand

Our children deserve better than 4%

One child… One moment… One word…

A powerful ‘word’ that will break hearts and send thousands of children to heaven

“CANCER”

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I met Nolan Scully only once at a fundraising benefit held in his honor. I had been following his Facebook page (NolanStrong) and I knew he had a rare cancer, Rhabdomyosarcoma (RMS). Like a superhero, he flew across the huge room (or shall I say ‘ran’ with a cape on), headed toward my direction. With his black satin cape flowing in the breeze behind him, he suddenly stopped to say ‘hi’ and pose for a few pictures. It was a quick greeting, muffled through the protective mask he was wearing to keep bad germs away. But that mask couldn’t hide the huge smile Nolan had upon his face. His crescent-moon shaped eyes squinted with joy as he paused to admire all of the attention. By that time, a mini-paparazzi crew, with myself included, were all on bended knee wanting to snap a picture of this courageous, fun-loving little guy.

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I instantly fell in love with Nolan. I looked forward to every post his mother, Ruth, put on Facebook. “Oh, look. There’s a new post about Nolan. Let me go read that before I do anything else,” was my typical feeling toward my Facebook newsfeed. That’s a powerful punch considering I had only met Nolan once for a few minutes. I was amazed by his fighter mentality, his charm, and his bubbly, positive attitude. It was clear to me that he loved to laugh.

Like many, I wanted to do everything I could to help Nolan fight this fight. Most of us could never imagine, or possibly understand, the devastation a child with cancer and their family will go through. Pediatric cancer is so much more than a St. Jude’s commercial we all look away from because “we’d rather not cry today.” Let’s stop looking away and start trying to make a difference.

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Although Ruth highlighted many treasured, beautiful moments shared with Nolan, darkness always lurked behind the scenes. Ruth braved sharing the ugly truth about pediatric cancer:

  • Doctors take an educated guess at how much chemo to administer
  • Parents lose their own identities because healing their sick child is #1 until the fight is over
  • Countless surgeries
  • Fevers, Diapers, Weight loss, Diarrhea, Vomiting
  • Tubes, needles, tests, procedures, transfusions
  • Spending several months of their life in a hospital
  • Emergency room visits; doctor visits
  • Panic, fear, frustration, anxiety, anxiousness, tears, loneliness, sadness, depression, anger, devastation, helplessness
  • Salespeople trying to profit off your child’s illness: “This product could save your child’s life!”
  • Siblings suffer emotionally as they watch their brother or sister suffer and possibly die

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And the ugly truth of pediatric cancer goes on….

Nolan has spent more than half of his ENTIRE life fighting just to stay alive. Now he’s living out his final days under Hospice care with his loving family at his side. It’s heart shattering and I’m praying to God for a miracle.

Life can be so cruel and I cannot make sense of any child suffering. “Why?” I’ve asked myself this over and over again. As I watched this tragedy unfold from afar through social media, futility became overwhelming. I felt so useless. Then, I realized there are some things we CAN do:

Here’s why that’s so important: The vast majority of cancer research dollars go toward fighting adult diseases. Of the National Cancer Institute’s (NCI) annual $5 billion budget, only about 4% on average is spent on projects specifically targeted at combating childhood cancers, though another quarter is devoted to basic research that could theoretically help both pediatric and adult cancer patients.

In 20 years the FDA has initially approved only two drugs for any childhood cancer – ½ of all chemotherapies used for children’s cancers are over 25 years old. Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to ZERO for childhood cancers. Pharmaceutical companies don’t commit resources to childhood cancer research because the adult cancer drug industry is viewed as more profitable and less risky to them.

Does this piss you off? Because it definitely pisses me off.  There’s clearly a disproportionate focus on adult over pediatric cancer research.

NCI’s funding for pediatric clinical trials is $26.4 million while funding for AIDS research is $254 million, and breast cancer is $584 million.

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According to CureSearch, each year, the parents of approximately 15,700 kids will hear the words “your child has cancer.” Across all ages, ethnic groups and socio-economics, this disease remains the number one cause of death by disease in children.

  • Every day, 46 children are diagnosed with cancer
  • 12% of children diagnosed with cancer do not survive
  • 1 in 5 children diagnosed with cancer will die within 5-years
  • More than 40,000 children undergo treatment for cancer each year
  • 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.

Let’s take a stand for Nolan and all of the other children battling this demon called cancer. Bombard Congress with your emails and letters. Support pediatric cancer research so that kids fighting cancer have a better survival rate.  Pray for the children suffering from pediatric cancer, and pray for their families.

❤  Nolan  ❤

A brave little superhero who wanted to dedicate his adult life to helping others.

A boy who loves emergency and first response vehicles.

A kid who loves life, people, and animals.

A kind, loving child who died from pediatric cancer on February 4, 2017.
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 ** TAKE A STAND AND DO SOMETHING **

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A video of Nolan’s journey:

 

A Letter to My Dad <3

Dear Dad,

Yesterday was a strange day filled with a rollercoaster of emotions. I was in a great mood, laughing and feeling a few moments of pure inner joy and cheerfulness. Mom, Michael, Kristie, Jenny and I had just had lunch together. It wasn’t a planned lunch. As a matter of fact, the “planning” happened over a period of about five minutes. Mom just happened to be nearby at Kohl’s. I’ll give you a moment to absorb that… as I know you’re shocked that Mom was out shopping. Haha. As everyone joked, told stories, and laughed, I thought to myself: I love my family so much. We’re mostly last-minute planners yet it turned out to be such a fun gathering.

I was in a productive meeting at work and once it ended, I walked back to my desk expecting to carry on with my day. It’s incredible how just one email from my brother could change my entire day from that point forward. Michael knows Jenny and I well enough that we’d rather read something and absorb it, than endure a devastating phone call. At first I thought to myself, “Did I read this correctly? Let me go back and read it again.” My heart sank. Did I just read that my dad has cancer? It felt like the air had just been sucked from my lungs. I called Jenny and I could tell she too had been crying. We met outside in our work parking lot, and we shared a sentimental moment together.  We talked, vented, hugged – and then we realized…. We are very ugly criers. We decided to go home for the day to pull ourselves together.

I suddenly had a flashback to when I was 10 years old. I had always been the little leader in the house, particularly in my relationship with Michael. I remember having a private conversation with Michael, asking him how he felt about us calling you “Dad.” Michael was only six years old at the time yet he had been so confident in his decision. He said, “I’m good with it.” It was as if Michael had been waiting for me to tell him it was okay. I felt very nervous about sharing my feelings with you. How exactly does a 10-year-old kid tell her step-father this? I didn’t talk to Mom about it because I wanted to be brave on my own. Michael and I walked out to the garage where you were working on one of your vehicles and I remember my sentence like it were yesterday, “Me and Michael were talking, and we’d like to start calling you dad if you’re okay with that.” Then, we just stood there… tick-tock…tick-tock… The uncomfortable, silent pause felt like an eternity but I think you were just gathering your composure. You said you’d be honored and that it meant the world to you.

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Remember the day of my wedding? All of the guests were inside the church waiting for me to walk down the aisle. The double doors were closed. No one stood behind those doors other then you, me, and Josh. Josh opened the doors and then there was a 5-second pause before the wedding march began. This would be the first (and only) time you’d ever walk me down the aisle. You looked at me and said, “Are you ready?” I gave you a huge smile and said, “Yep. I’m ready!” You looked so confident and proud as you said, “Okay, Let’s go.” Look at Jesus in the background.  It’s almost as if he was winking at me saying, “Go ahead, girl! Get on down that aisle!”  To my surprise, my friend Brenda caught our special moment on film.

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I’d love to share more amazing stories like the last few paragraphs, but let’s be realistic. I was a bratty teenager with little regard for anyone but myself. So there was a gap of time where things weren’t perfect. Thank God I found my way back to the person I once was before life’s circumstances took away most of my happiness.

Daughters use that quote “My Dad is my hero” all the time but I actually lived through that phrase. I wouldn’t be alive today if not for you. Typically you’d only see a father screaming his daughter’s name then aggressively removing her abuser’s hands off of her in a movie. But that was me, and you were my hero. You’re still my hero!

I wrote you this letter for a few reasons: (1) I want you to know that we love you, (2) I wanted to share my two most favorite memories with you to make you smile, and (3) I want you to know that you’re not alone in whatever journey you’re facing. We’re all here for you. Your faith and assurance in God is an inspiration to all of us; however, don’t expect your family to sit back and be nonchalant either. LOL. Not happening.

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I love you.

Love,  Missy

PS – Please, anyone who reads this letter, I would ask that you say a prayer for our dad and our family. Our family strongly believes in the power of prayer, and we know that God is the #1 Physician. Thank you.

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