Pediatric Cancer: Take a Stand

Our children deserve better than 4%

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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: