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Embry Riddle Students Learn about Caring Like Nicholas’s Fight

by andrew

Thanks to the work of Caring Like Nicholas member Andy A. McClary, the following article Appeared at the top of the Embry Riddle Aeronautical University “ERNIE” website which all the student use to sign up for classes.

 

Grad Student Has a Drive to Save Lives: Register for the Bone Marrow Registry

​The iPad that Andy McClary takes to his Mechanical Engineering classes is more than a convenience. It is a reminder of the brother who should be at Embry-Riddle with him. His family purchased the iPad for Nicholas, who was too frail to carry books across campus.

When Andy was in his second year at Embry-Riddle, Nicholas complained of neck pain over Thanksgiving. It didn’t seem serious.  Nicholas was a healthy high school junior, excelling at Advanced Placement Physics and Calculus. He tried out different pillows and mattresses. When the pain persisted, he saw a doctor who ordered an MRI. The doctor’s face went white when he saw the results.

After finishing his exams, Andy drove to Boca Raton, Fla., for a much-deserved Christmas break. Upon arriving home, his dad called and told him, “Nicholas has cancer. I’m coming home to pick you up.” Once at the hospital, the full impact hit. The diagnosis was Ewing’s sarcoma, a rare and aggressive bone cancer, inoperable because of its position.

Andy offered to give up his full-ride scholarship to stay at his brother’s side. Nicholas wouldn’t have it. As a compromise, Andy made the three-hour drive home every weekend. For three years, without fail.

Nicholas underwent a combination of chemo and proton therapy. After the first year, tests showed they successfully fought the Ewing’s sarcoma. For the briefest of moments, the family enjoyed Christmas together. At the start of the new year, doctors informed them that Nicholas had the precursor to leukemia. That is when the search for a bone marrow donor began. There was an additional challenge. Nicholas and Andy have a Caucasian father and Hispanic mother, and as a result, there are fewer potential matches in the registry. The family’s first outreach to the public was a drive hosted by Car Show Television, an automotive car program they produced.

As they struggled to care for Nicholas, both parents had to quit their jobs. “My dad could not keep up his production schedule and get Nicholas to appointments. My mom was an elementary school teacher and couldn’t risk bringing anything home from kids because Nicholas’ immune system was compromised,” said Andy. Medical bills eventually crept into the millions.

The family began looking for a hospital with a bone marrow unit, which requires an isolated, self-contained environment and dedicated staffing. They settled on Holtz Children’s Hospital in Miami. Nicholas’ mom was only a partial match, but she was the only option they had. On March 6, 2017, she donated stem cells to save her son.

The family mantra remained: This is temporary. Nicholas continued to plan for the future.

Despite “chemo fog” and sporadic online classes, Nicholas earned a perfect score on the math and science sections of the ACTs. He chose Embry-Riddle, where he planned to study Mechanical Engineering. Like his brother, he was offered a full scholarship. On Preview Day on the Daytona Beach Campus, Nicholas was grinning from ear to ear despite his weakened state. The family met with staff to arrange a private room and medical accommodations if the need arose.

At Andy’s graduation, Nicholas started coughing.  A collapsed lung sent him back to the hospital. The doctors discovered he had Graft versus Host Disease (GvHD), a dangerous complication of a bone marrow transplant in which the immune system turns on the body.

Andy continued to make weekly trips to South Florida to see Nicholas and help his parents. “I’m joking with Dr. Charles Reinholtz that for most students, mechanical engineering is the most stressful thing they do …,” he remembers, thinking of the situations his family dealt with daily.

The nightmare of hospital visits, endless cleaning to keep the house meticulously sterile, caring for Nicholas in shifts, so he was never alone and administering more than 20 daily medications continued. In the hospital, Nicholas suffered a stroke that left him partially paralyzed, landing him in the pediatric ICU. However, the family remained hopeful, reminding Nicholas, “this is only temporary.”

Nicholas died about a week before Thanksgiving. He was 19.

Andy wanted to keep fighting. He reached out to several bone marrow registries and organized the first drive on the Daytona Beach Campus over Embry-Riddle Family Weekend in 2018. ROTC students were early supporters. Health Service wanted to help get the word out. His family also started a foundation, Caring Like Nicholas.

“Everyone helped,” he said.  The support I received from the university has been amazing. “Even President Butler helped out by making a PSA promoting the national bone marrow registry.”

Education is part of Andy’s mission. “The initial test is just a simple cheek swab. If you are a match, the process is as simple and painless as donating blood.”

Andy is in the right place to build the registry. Ideal donors are 18-year olds, but registries welcome donors ages 18 to 55. Embry-Riddle students in Daytona Beach can join the registry with a quick visit to campus Health Services or by visiting https://caringlikenicholas.org/howtoregister/.

Andy keeps a hectic schedule. He has served as a peer mentor and lab monitor and now runs the 3D print lab. He is president of Kappa Mu Epsilon, the mathematics honor society, and president of Pi Tau Sigma, the national mechanical engineering honor society.

What he doesn’t do is worry. “I used to stress during my freshman year, worrying about keeping my grades up because of my scholarship,” he said. “In dealing with life-or-death situations, you realize other things will work themselves out.”

Despite his busy schedule as a graduate student, he continues to organize and promote bone marrow registry drives. “It’s my way of continuing the story,” he said. “If it saves one life, it’s worth it.”


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    Our Mission

    Caring Like Nicholas's primary mission is raising the number of people who are registered to be potential bone marrow donors, thus increasing the likelyhood that some child out there will find a perfect match and survive. Our plan to do this is by educating people on the need, how easy it is to register, how easy it is to donate, and get people involved.