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Tag Archives: Rhabdomyosarcoma

Nolan’s Story

We would like to extend our deepest condolences to the family and loved ones of Nolan Scully, who earned his angel wings on February 4, at the age of four, after a long and hard-fought battle with Rhabdomyosarcoma. At every stage of his fight, through intense chemotherapy and harsh radiation therapy, Nolan showed the courage and perseverance of a true childhood cancer warrior. His story, as told by his loved ones, is an inspiration to us all, and a reminder about the critical need to find a cure for this deadly and devastating disease.

Nolan’s Story, in the words of his family:

nolan“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, his mother, 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 Scullys 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.

Rhabdomyosarcoma Childhood Cancer

“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’s 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 the nose and right above the throat.

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..

The Georgetown Hospital Pediatric Oncology Department became Nolan’s second “home” over the next several months, with a . team of care providers who treated him with much love and kindness. The doctors analyzed every possible avenue to 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 their daughter, 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 dreamed of becoming a fire fighter like his dad someday.

More of the community began showing their support and participating in fundraisers and benefits. Nolan even received a visit from the Washington Capitals!


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Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (February 2016). 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. Family and friends coordinated more fundraisers. The outpouring of support 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 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 went on to say that she felt like the lucky one. ”Lord, please spare my child and let him win against this beast of a cancer,” she later wrote.

In October 2016, Nolan underwent a 12 1/2-hour surgery to remove the  tumor, and bone-grafting to repair damage caused by the tumor. The following weeks were incredibly difficult and painful, especially as the cancer spread into his lungs and Nolan underwent yet another surgery. Sadly, the tumors spread around his heart and there was nothing more the doctors could do.

Nolan earned his angel wings on February 4, 2017.
“Nolan went through more tragedy as a four year old than most adults go through in a lifetime, yet throughout it all, Nolan was courageous and fighting. He is a real-life superhero—a conqueror. He has united thousands around the world, and inspired so many.  He gave us hope and we will miss him so much.”

#NolanStrong forever

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

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