I’m a St. Mary’s County resident, and I wrote an article about Nolan Scully, a little boy living with a rare form of cancer. He lives in Leonardtown, MD. Here it is:
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 Sept. 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.
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, and skeletal muscles control voluntary activities. Rhabdomyosarcoma (RMS) is a malignant tumor (cancer) that rises 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 most often seen 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 couldn’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 invaded his little body.
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 cheer 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 toys. He had his invisible super hero cape on and he was ready to kick cancer’s butt!
Nolan has a strong appreciation for any kind 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 Dec. 26, Ruth gave birth to a 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.
Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (Feb. 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!
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. The East Farmingdale Fire Department sent gifts. Then, the Philadelphia Police Commissioner inducted Nolan as an Honorary Police Officer. Nolan was so excited!
Summertime came around but 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 had 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.
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 scheduled 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.
Through all the chaos, heartache and disappointment, time would pause for just one day. On Sept. 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 went on 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 later wrote.
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 Oct. 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 repair damage 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 superhero – a conqueror.
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.
