By Ed Morrone

ed@headstrong.org

Nettie, Teddy and Nate Prive came all the way from Alabama to stay in Nick’s House while Teddy was receiving leukemia treatment at Children’s Hospital of Philadelphia. During their stay, Teddy, 2, got to see snow for the first time in his young life.

Nate and Nettie Prive were living every young parent’s dream.

It was early April in 2017 when the couple’s first child, Theodore, or Teddy for short, came into Nate and Nettie’s worlds. As is the case for most new parents, Teddy’s arrival flipped Nate and Nettie’s world on its axis.

“It was such a beautiful thing; love at first sight, it really was,” Nate said. “The love you feel in that moment, you’ve never felt it before. You love someone in a way you didn’t even realize you were capable of loving another thing or human.”

The couple both had fulfilling full-time jobs and had just bought a house 10 minutes from the beach in Foley, Alabama. Once Teddy came into the picture, this young family had it all.

Until they didn’t.

“It was a short four months before all of that was ripped away from us,” Nate recalled. “Suddenly, we were being told to do something immediately, or our child is going to die. It’s definitely the worst feeling to ever experience in life.”

Problems first arose when Nate and Nettie discovered bruising on Teddy’s lower legs after picking him up from daycare, a strange occurrence considering that at four months old, Teddy was still relatively immobile. Nate took Teddy to the pediatrician on Aug. 30. Within an hour, after drawing some of Teddy’s blood, the doctor returned to the room, stone-faced.

“She said, ‘His white blood cell count is extremely elevated, and I think he has leukemia,’” Nate said. “You hear something like that, and you’re like, ‘What?’”

Doctors in Alabama admitted Teddy that same day, ordered a bone marrow aspiration and confirmed the diagnosis. Teddy began receiving high-dose chemotherapy the next day, the first of 227 consecutive inpatient days, or approximately seven-and-a-half months of Teddy not being able to leave the hospital once. The stay was so lengthy that Nate and Nettie converted Teddy’s hospital room into the family’s new home, complete with a pullout couch and an air mattress for the floor.

Teddy had to spend his first Thanksgiving, Christmas, Easter and birthday in the hospital, but on April 13, 2018, four days after his first birthday, Teddy went into remission, where he would remain for 16 months.

“Infant leukemia has a high chance at relapse within the first year, so we were super pleased when we hit the year mark,” Nate said. “We felt great, like we were pushing forward.”

On Jan. 17 of this year, the Prive’s were stopped in their tracks once more, as a visit to the pediatrician revealed that Teddy’s leukemia had returned. Local doctors in Alabama, having done all they could, recommended treatment continue elsewhere, where Teddy could get more advanced, specialized care. Nate and Nettie, wanting to give Teddy his best shot at recovery, quickly zeroed in on Children’s Hospital of Philadelphia (CHOP), a top-10 facility globally in pediatric oncology care.

How the Prive’s would get to Philadelphia from their home 1,200 miles away was a significant dilemma. Doctors warned against a 20-hour car ride due to Teddy’s compromised immune system. Medical air transport became the most palatable option, but how would the family pay for it?

They placed a few calls to some nonprofits before stumbling upon AngelMed Flight, an aviation company based out of Scottsdale, Arizona, that offered to pick up all of the flight expenses, totaling $281,000.

“The flight was an incredible blessing; God’s hands were on the situation,” Nate said. “When they said they wanted to do it free of charge, it was a total ‘Wow’ moment. The first time any of us ever got on a plane, it was a medical flight Learjet. It was a really cool experience for us.”

Nate and Nettie opted for CAR T-cell therapy for Teddy rather than a bone marrow transplant simply because the latter was less risky and invasive. The CART therapy was birthed in Philly and had promising statistics, and as of this writing the Prive’s were awaiting results to learn if Teddy’s healthy T-cells were successful in attacking and destroying his cancerous counterparts.

The family expected to be fully inpatient once again and prepared for another lengthy hospital homestead. However, after five days, CHOP doctors, encouraged enough with Teddy’s early progress, told the family they could proceed with outpatient treatment.

But where would a family from Alabama who knew nobody in Philadelphia stay? Already worried that a lengthy Philly stay would cause the Prive’s to lose their new home, they again caught a lucky break when another nonprofit stepped in to have the trio’s backs.

This time, it was the HEADstrong Foundation offering Nick’s House as a safe haven for Nate, Nettie and Teddy. Nate came to check in while Nettie and Teddy remained behind at the hospital, and he couldn’t believe the family’s good fortune as soon as he stepped inside.

“You walk in and you’re taken aback, because you don’t expect something like this to be offered to you for free,” Nate said. “It’s like a home that people pay to come vacation in.”

The key word for the Prive’s in this case was home. After spending close to half of his life inside a hospital room, Nate and Nettie longed for any sort of normalcy for their little boy. That meant being able to come home from treatment and socialize with volunteers and other guest families, play with his toys and have a life just like every other kid his age should.

“He gets to be a normal little boy here,” Nate said. “We can sit here watching TV while our kid is on the floor playing with Hot Wheels or his coloring book, how it should be. As a couple, it helps us escape and gives us the mental peace and clarity to be able to just breathe for a little bit.

“It continues to give us hope, and we cling to that. It’s easy on the hard days to fall into the ‘life is hard, this sucks’ trap; but then you come to a place like this where you can escape and live life like normal. There’s less of those days that punch you in the fact or gut, and that can’t be coincidental.”

This journey has been anything but typical for the Prive’s. Their only son has been fighting leukemia for a good chunk of his life, and they haven’t been home to Alabama since January. Nate and Nettie are hopeful to get good news on Teddy’s CART results sometime soon; if they do, the family should be able to head south in early May. If the CART doesn’t work, Nate and Nettie will consider future treatment options, which could include a bone marrow transplant and several more months in Philadelphia.

Regardless of what happens, the Prive’s are beyond thankful. The money they saved by staying at Nick’s House allowed them to keep paying their mortgage, and they picked up several new family members along the way as their odyssey twisted and turned its way to Philadelphia.

“If we didn’t have this place, we would have lost everything back home,” Nate said. “It has been so important in our healing and recovery. It’s kept us afloat, and allowed us to have a normal life even with what’s going on with Teddy. Nick’s House is ingrained and instilled in us. It’s kind of a weird dynamic, we’ve only been here three months but it feels like years with the relationships we’ve built staying in this house.

“Just being able to experience excitement on his face has been such a beautiful thing to see. We made wonderful memories here and built amazing friendships. I don’t know what we would have done without it, honestly.”

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