Nolan’s Story – Why Research Matters

Megan Morrey CCAM, Stories

Nolan, then just 16 months old, had labored breathing in the few weeks before Labor Day 2015. Originally thinking it was asthma, his parents, Peter and Lydia, took him to the local emergency room where doctors ordered an x-ray. The news they received was terrifying in its uncertainty.

“They told us Nolan had a significant mass in his chest,” Peter said. “They didn’t say ‘cancer’ at that point, but we knew something was really wrong. You never want to hear the word ‘mass’ when talking about your kid.”

The night then became a whirlwind. Nolan and his parents quickly scheduled an emergency surgery early the next morning to remove fluid from Nolan’s lung and retrieve samples of the tumor.

Peter and Lydia remember sitting in the waiting room and looking at the clock, waiting until the time the doctors had said they’d likely be done with surgery. Prayer is what got them through those agonizing minutes. The image of Nolan right after he came out of surgery is one Peter says he’ll never forget.

“Seeing him hooked up to everything, with tubes coming out of him, it was frightening,” Peter said.

When they finally received the diagnosis that Nolan had an extremely rare tumor in his chest, his family felt relief to finally know what it was, but fearful of the road ahead. Fortunately, the Children’s Hospital of Philadelphia had recently wrapped up a multi-year study on the impact of a chemotherapy drug for cancers similar to Nolan’s. Peter and Lydia were relieved to hear that this chemo wouldn’t destroy Nolan’s immune system, but it had to be administered orally, which was a challenge.

Any parent knows how difficult it is to feed an uncooperative toddler – now imagine trying to feed him a large amount of medicine that tastes terrible. That’s what Peter and Lydia had to do with Nolan, twice a day, every day for eleven months.

“The first few times we tried giving it to him, he threw it right back up,” Peter said. “We tried every trick in the book to get him to take it – we tried to disguise the taste with maple syrup or chocolate flavorings but nothing worked. That was scary in and of itself because we kept thinking, if he can’t keep this stuff down, how is he going to get any better?”

Peter and Lydia finally found a flavored mouth spray that seemed to mask the taste a bit, and Nolan became more accustom to taking his meds, which shrunk the tumor to a point where it could be surgically removed. When doctors took the tumor out in August 2016, Peter and Lydia thought they were putting the cancer world behind them. Until four months later – scans found there was more cancer growing in Nolan’s chest.

Nolan had surgery again in January 2017 and went back on his foul-tasting chemo for another six months. Since then, every scan he’s had has been clear. Since his last surgery, the longer Nolan goes with clear scans, the better his chances are that his cancer may be gone for good.

Peter and Lydia are most excited that Nolan is back to his energetic, loving self. He’s a lover of all Disney movies, especially the ones that involve fighting bad guys. He’s a great role model to his little sister Ellie, who follows him around and loves to copy whatever he does. Peter and Lydia say that they just love watching the kids play together like any other siblings. It’s a reminder to them of how quickly things can change and how important it is to savor every moment.

Peter and Lydia also think it’s important to give back, since their son benefitted from a treatment that wasn’t around just five years ago. Nolan serves as a reminder of why research matters, and the kids it benefits today.

“If this happened in 2010 rather than 2015, who knows what the outcome would have been,” Peter said. “It just goes to show how important research is and why research matters. There are so many great people working for cures, and we’ve been a beneficiary of that. We feel very fortunate to have had access to the incredible treatment and exceptional care that Nolan received and we’re thankful for all the advances in this field. Hopefully what we’re sharing is a success story.”

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The treatment for Nolan’s cancer wasn’t around 5 years ago, but hardworking researchers have made it a reality. Learn how you can get involved and support researchers who are working on the next treatment breakthrough for kids like Nolan.

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