Arizona mother thanks St. Jude Children’s Research Hospital for providing extra time with her son

PHOENIX (AZFamily) — A blue ribbon hangs on a special tree at Chaparral Park in Scottsdale. It was planted in honor of a boy named Juan.

“For me, it’s a way to remember Juan, you know? I just try to keep his legacy alive, and I think that’s one of the ways to do it,” his mother Amelia said.

Juan is missed by his family every day. It’s hard to choose one thing they miss most.

“Everything. Saying one thing is like picking a favorite child in most eyes,” his brother Javier said. “He’s just like that one person that’s just so amazing no matter what. Like my mom said, he never had any sad days.”

Amelia and Javier shared their story that began in 2012 when cancer hit their family.

“So just hearing that word is like, ‘My kid is going to die,’” Amelia said.

Doctors found a brain tumor when Juan was just 9 years old.

“Here in Phoenix, they basically told me that I should go home and enjoy my kid because even with chemo and radiation, he probably wouldn’t make it past six months, that the tumor was too aggressive,” Amelia said.

The Valley mom wasn’t ready to accept that grim time limit. That’s when she found St. Jude Children’s Research Hospital.

“They gave me that hope,” she said. “As soon as you walk through those doors, they connect you with someone that’s like showing you the ropes, kind of like with the nurse, and you meet your team. So you come into a world and you’re like, ‘Wait, am I really not getting charged for this?’ Like …too good to be true, right?"

For nearly three months, Amelia and Juan lived in Memphis as he was treated at St. Jude. They never paid a dime for travel, meals, housing or medical treatment.

“They gave me my son back, you know; it was after that second surgery that he just came back, and it was like it was Juan again,” his mother said. “I don’t know if that makes sense like it was him. He was joking around. You know, like, all he wanted to do was eat.”

Juan was well enough to go back home to Arizona. But then cancer would strike the family again.

“I was diagnosed six months to the day of Juan with breast cancer myself,” Amelia said.

Juan’s doctor at St. Jude believed this was more than just a coincidence. Juan tested positive for a genetic disorder that at the time didn’t even have a name.

“It just so happens that I was able to bring Javier along on that trip, and his doctor offered to test both of us at the same time, which then resulted in all three of us being positive for what is now called Li-Fraumeni syndrome," she said.

Amelia beat the cancer, but Juan relapsed three times.

“In 2017 was when it came back,” she said. “St. Jude put him in a couple of clinical trials, and then in March of 2018, we’re like, there’s nothing else, like, the tumor’s not responding to anything that we’re giving it.”

Juan passed away in Phoenix surrounded by his family, right after his little brother’s birthday.

Juan lived six years longer than he was supposed to, thanks to St. Jude Children’s Research Hospital, and his mom is forever grateful for that extra time they had together.

“I don’t think I would have had that additional time with Juan had I not had St. Jude,” Amelia said.

“Losing Juan has definitely shown me what heartbreak is. Like it’s a physical pain that I can’t even explain. It’s something that to this day, I can relive his last moments like it was yesterday. I can hear his laugh. I can remember the last year that Juan, Javier and I spent in Memphis like it was just yesterday. It doesn’t get easier,” she said.

That’s a sentiment that Javier shares.

“If you had a chance to say something to him, tell him anything, what would you tell him?” Arizona’s Family’s Tess Rafols asked.

“Nothing. Just hug him. Hug him like there was no tomorrow. I don’t think no words could ever amount to even one single second with him.”

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