By Ed Morrone
For his first birthday back home in Williamsport, Pa., Nolan Redmond was treated for the first time to the delicious taste of cake and ice cream.
After more than 300 days spent inside hospitals during the first year of his life, the big guy had earned all the sweets that came his way. However, first came some reflection, a look back on a whirlwind year that saw Nolan diagnosed with congenital acute lymphoblastic leukemia (ALL) when he was just three days old. Sprinkled into that time window was chemotherapy, a brief remission that quickly and frighteningly devolved into relapse, a bone marrow transplant and a bout of sepsis that sent Nolan and his mother, Rachel, to Children’s Hospital of Philadelphia (CHOP) in a state of emergency.
When Nolan was initially sent to CHOP from Williamsport — nearly 200 miles and more than three hours away by car — Rachel and her husband, Bill, were met with a conundrum. Their son would require lengthy hospital stays and frequent monitoring by doctors in the Delaware Valley, so where would the first-time parents, going from two full-time incomes to roughly one-half of one, stay?
Well, not only did Nick’s House Swarthmore allow the Redmond’s a free place to stay, but perhaps more importantly, it allowed them to spend extended time in a home, which was desperately needed after the only new people Nolan got to meet were doctors and nurses in gowns and masks, poking and prodding his little body with all sorts of needles and tubes.
“Structurally, this place is a home,” Rachel said during a pre-Christmas chat at Nick’s House, with a smiling and cooing Nolan bouncing on her lap. “Developmentally, it was nice for him to be in a home and be able to go from one room to another, or to go outside and sit on the porch. Being in this house, he loved seeing people who weren’t wearing masks and poking him to draw blood. He lip smacks at people from across the kitchen, performing and smiling for them. Now that he’s out of the hospital, he’s got so much to see. He knows it, and he’s interested.”
Save for a visible feeding tube, there are not many outward signs that Nolan is anything but a normal 1-year-old baby. If anything, he is abnormal in how well-behaved he is, especially when considering all he’s been through. During the course of a more than 30-minute conversation, he only lightly fussed here and there; but he never cried, and mostly he observed his surroundings through curious, absorbent eyes.
Nolan may have been weakened by chemotherapy and countless hospital trips, but his spirit always remained strong. The little boy with a huge heart has been a fighter from the start.
“It’s something we’ve heard his whole life,” Rachel said. “If you didn’t already know he had cancer, then you would have no idea. He’s a little small for his age in stature, but he makes up for it in personality. He’s the most easygoing baby; if he’s upset, there’s a reason. He’s resilient. With the things he’s been through and come back from, he’s always smiling. He’s been in a lot of pain and undergone some awful treatments, and to still see him smile, that’s what I’m most proud of. He keeps the both of us going.”
As if being new parents wasn’t challenging enough, the Redmond’s entered, as Rachel said, a truly terrible fraternity that nobody ever wants to join: The Parents of a Child With Cancer Club. Luckily for Bill, Rachel and Nolan, the HEADstrong Foundation was built because Cheryl Colleluori, foundation president and HEADstrong founder Nicholas Colleluori’s mother, and her husband, Pat, were called into that club more than a decade ago.
Out of their grief and sorrow, HEADstrong was born, and years later Nick’s House opened to help those whose lives have been turned upside down by cancer. The Colleluori’s loss became the Redmond’s gain, as they knew exactly the kind of hell the first-time parents were enduring.
“You can tell who’s a part of that club, and right after she introduced herself, Cheryl hugged me,” Rachel recalled. “She knew what we’d been through. It’s a different language, one that she understood.”
“One of the benefits of that commonality is not the things you say to each other, but rather the things you don’t have to say,” Bill added. “Talking to someone on the outside, there’s layers of explanation to go through, but people going through it and those who have gone through it, they don’t have to say anything. That comfort and peace of mind, it’s a big thing.”
In the months the Redmond’s called Nick’s House their temporary home, they were able to bond and commiserate with other patients going through similar ordeals, another shared common ground that many Nick’s House guests say is crucial in the healing process.
“You become invested in each other,” Rachel said. “Invested because cancer is awful. You want to do anything you can for folks, whether they’re doing well or not. You become part of each other’s stories, and offering support and understanding is important.”
With the New Year upon us, the Redmond’s are back home in Williamsport, and after an arduous year, are finally hoping to begin looking forward, which of course started with a birthday celebration replete with cake and ice cream for the guest of honor. That said, Nolan will still be back in Philadelphia for monthly appointments and checkups, which will serve as a fond reminder of the place that became his second home.
“What we benefited from the most was the provided normalcy, at least as normal as any of this can be,” Rachel said. “Being in a home may sound trivial to people, but Nolan’s been alive a year and has spent more than 300 of his days in hospitals. We don’t take for granted being in a home. It’s not our home, but it feels like as much as it can be as any other place.
“As excited as we are to get back to our home, having people take us in in a city where we aren’t from and don’t have any family, they became our Philadelphia family. That home structure provided a huge level of normalcy, and it helped us out in a lot of ways.”