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”

fb_img_1486146082086

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.

20170203101948

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.

14632879_10206637886660672_6426613910884672893_n

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

fb_img_1486146070563

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.

untitled

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.
fb_img_1473207192908

 ** TAKE A STAND AND DO SOMETHING **

1486046218081

A video of Nolan’s journey:

 

Courageous Boy with Rare Cancer Fights Back

The Story of Nolan Scully – A Superhero

There is no greater love than the love a parent feels for their child.  It’s almost indescribable – the great measures a parent would go through to protect their child from any harm or injustice. They’d give their last dying breath if it meant just one more day in the life of their child. There’s something particularly special about the bond between a mother and her son. It is the purest love, unconditional and true.

Jonathan and Ruth Scully of Leonardtown, Maryland, welcomed their beautiful baby boy, Nolan, into the world on September 7, 2012. His nine-year-old sister, Leila, couldn’t wait to meet her baby brother.  Life was good for the next few years. “Rollin’ Nolan” lit up a room with his contagious laughter and outgoing personality.

2.jpg

Jonathan and Ruth were expecting again and the baby was due the end of December 2015.

In October 2015, three-year-old Nolan came down with a stuffy nose which a parent typically wouldn’t stress over; that is until Ruth noticed her son began snoring and having difficulty breathing. Doctors thought it was a severe sinus infection and prescribed Nolan some potent antibiotics, humidifier, and saline spray. The regime didn’t help.

After an emergency appointment with an Ear, Nose and Throat (ENT) specialist, it was discovered that Nolan’s adenoids were extremely swollen and surgery was needed. In November 2015, Nolan had his adenoids and tonsils removed.

A few days after the operation, Nolan’s biopsies came back. Nothing could prepare a parent for what was about to happen next. The doctors told the Scully’s that Nolan had a rare and aggressive form of cancer called Rhabdomyosarcoma. This type of cancer is every bit of cruel in its silent relentlessness.

There are two types of muscle cells in the body: smooth muscle cells and skeletal muscle cells. Smooth muscles control involuntary activities; skeletal muscles control voluntary activities. Rhabdomyosarcoma (RMS) is a malignant tumor (cancer) that arises from a normal skeletal muscle cell.

About four children per million healthy kids under the age of 15 will develop RMS each year. It is slightly more common in boys than in girls and it is most common in young children under the age of five.  Nearly 40% of all RMS cases involve the head and neck region. 

In an instant, the Scully’s lives were turned upside down and life would never be the same. There’s an intense shock, confusion, anger, disbelief and overwhelming sadness that comes with such a diagnosis.  Paralyzing fear doesn’t begin to describe the panic his parents felt.  On top of all that, Ruth was pregnant. How can a mother enjoy her pregnancy when one life is growing while another is suddenly sick with life-threatening cancer?

The Georgetown University Hospital, Pediatric Cancer Clinic, immediately took over Nolan’s case. PET Scans, CTs, and bone scans were ordered. Because the doctors had discovered an obstruction (tumor) in Nolan’s nasal airway, sedation for his tests wasn’t recommended. Instead, Nolan was admitted to the Pediatric Oncology unit where he was put under general anesthesia for the procedures. The surgeons also put in a chemo port.

“That was one of the most hardest, most terrifying things we’ve ever had to experience… seeing our beautiful baby hooked up to a ventilator machine,” Ruth explained.

The family was heartbroken and beyond devastated to learn that Nolan’s tumor was considered “inoperable.”  However, his tumor appeared to be isolated to his nasal pharynx which is right through your nose and right above where your throat is.

Just like that, this brave little boy would begin the toughest journey of his life.

Nolan would have to complete 43 agonizing weeks of chemotherapy, and that didn’t include the shots, infusions, transfusions, scans, tests, and constant blood withdrawals. Imagine the sorrow his family felt in hearing that news, and the guilt in knowing they can’t save him from this nightmare.

The Georgetown Hospital Pediatric Oncology Department became Nolan’s second home over the next several months.  Obviously a hospital isn’t a preferred second home but having a wonderful staff made the stay a little more bearable. Nolan received his own team of care providers and they treated him with much love and kindness. The doctors analyzed every possible avenue to speed-heal Nolan from this cancer that had silently invaded his little body.

35

Jonathan and Ruth turned to family, friends, and the community for much needed support.  The emotionally draining, uphill battle would be impossible to face alone, and they needed to maintain their household and care for Leila. Somehow Ruth found strength to begin chronicling her son’s journey on Facebook (NolanStrong).

The downward side effects of chemotherapy kicked in. Nolan started losing his hair and he was very upset over it.  His parents comforted him by taking him out to see the Christmas lights around town and it helped cheered him up. Sickness and exhaustion became a regular part of Nolan’s existence, but the amazing Georgetown staff kept Nolan occupied throughout the day with activities such as painting pictures and playing with construction trucks.  He had his invisible super hero cape on and he was ready to kick cancer’s butt!

12439060_10204865314507476_7080981358006483375_n

Nolan has a strong appreciation for any type of first responder. His dad is a deputy fire chief and Nolan hopes to follow in his father’s footsteps someday. He loves any type of emergency vehicle – fire trucks, police cars, ambulances, etc. So, the Hollywood Volunteer Fire Department paid Nolan a visit in their fire trucks.  Nolan glowed in excitement!

More of the community began showing their support.  Nolan received a visit from the Washington Capitals! Also, the NolanStrong 5K benefit was held.

On December 26, Ruth gave birth to healthy baby boy.  They named him Brayden. Nolan was unable to meet his little brother until a few days later because his immune system could have been compromised.

10593087_10204835125592772_2501576915696779939_n

Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (February 2016).

The NolanStrong page had been attracting a lot of attention and people wanted to do anything they could help. A creative fundraiser called “Buzz Off Cancer” was held at the Gatton Barbershop where customers donated dollars for a buzzed-off haircut.  It also marked a courageous day in Nolan’s journey as he bid farewell to his hair for the first time since his cancer diagnosis.  Although Nolan had been the favorite customer of the day, it was incredible to see the many long-haired men in line for a buzzed-off haircut. It was a great turnout!

30

Ruth kept Nolan’s followers informed of his struggles. Fevers, headaches, vomiting, ear and eye pain became a part of his daily life.  At almost four years old, Nolan weighed only 13 pounds more than he did at six months of age.

Fire services continued to show their love and support for Nolan. The East Farmingdale Fire Department sent gifts. Then, the Philadelphia Police Commissioner inducted Nolan as an Honorary Philadelphia policeman. Nolan was so excited!

64

Summertime came around and cancer and a weakened immune system had robbed Nolan of so many fun activities.  He couldn’t attend a planned Nationals baseball game, go swimming, or play in the sand.  But Nolan has a warrior mentality and he told his mom, “That’s okay, Mommy. Once I get my cancer out I’ll be able to do anything I want.”  So, Nolan’s parents scheduled fun activities whenever possible.  They visited Jurassic Quest and the National Harbor. He also got to shoot hoops with the Washington Mystics.

13769473_1739022393018957_8255404881248135357_n

More fundraisers were coordinated by family and friends – Softball and corn-hole tournaments, silent auctions, raffles, participating restaurants, sold-out dances and more. The outpouring was incredible.

By August 2016, Nolan’s health took a turn for the worst. Testing revealed Nolan’s cancer cells were still very much active.  August 29, 2016 was supposed to be his last day of scheduled chemo. Ironically, and with great sadness, it became his first of 50 more rounds of chemo, and this batch would be far more potent.  Additionally, a different kind of radiation would be considered and possibly surgery, his parents were told.

14449809_1766456336942229_2030952057221493178_n

Through all the chaos, heartache and disappointment, time would pause for just one day.  On September 7, Nolan celebrated his 4th birthday.  Family, friends, schools, and the community sent Nolan gifts, cards, and get-well letters.

Later that month, Ruth shared a sentimental moment with Nolan’s Facebook fans. While lying in bed one evening, she laid her head up against Nolan with her eyes closed. Nolan thought his mother was asleep. He kissed her on the forehead and whispered, “I’m so lucky to have you as my best girl.”  Ruth later blogged to say it was her that’s the lucky one. “Lord, please spare my child and let him win against this beast of a cancer,” she wrote.

14632879_10206637886660672_6426613910884672893_n

Nolan’s courageous fight has united thousands of people together in daily prayer. He’s a super hero who just wants to be a normal, healthy little boy enjoying his life.

A year has passed since the Scully’s learned of their son’s cancer yet the strength of Nolan and his family continues to persevere.  They won’t quit and they’ll never give up.  So, when the doctors told them their son’s tumor had considerable growth even though he’d been through two aggressive cycles of chemo, they knew their last hope was a risky, invasive, and terrifying surgery.

A prayer vigil was held on October 23, 2016. Although Nolan couldn’t attend, he passed along a few things he is thankful for: ham and pineapple pizza, watching movies and eating popcorn while lying on his mommy’s lap, sunny days where he can play outside, and he asked that everyone pray for fire fighters and policemen. That evening, a selfless Nolan warmed hearts around the world with a video to all of his Facebook fans. Yes, he is determined to beat this cancer.

The next morning, Nolan underwent a 12 1/2-hour surgery to remove the tumor, and bone-grafting to make repairs caused by the tumor. The approaching weeks are going to be incredibly difficult and painful.  Nolan has gone through more tragedy as a four year old than most adults go through in a lifetime. He is a real-life super hero – a conqueror.

14040116_10206191762907857_59912680576700803_n

Today, he continues to fight for his life and he has thousands of followers from all around the world.

Consider joining Nolan in his fight!  He loves receiving letters, cards, words of encouragement, and of course, gifts.  Prayers are most appreciated! Contributions are welcome: ICO Nolan Scully, PO Box 2443, Leonardtown, MD 20650. Donations will help with incurred medical expenses, travel, lodging and additional expenses throughout Nolan’s battle.

To see this story on The Huffington Post:

Courageous Boy with Rare Cancer Fights Back