St. Jude mother, worried her son would be forgotten, realizes he left a legacy.

Amelia Salas lost one son to cancer. She’s counting on what St. Jude researchers and doctors are learning from genetic testing to save another.

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It’s been 3½ years since Juan Salas died, and his mother Amelia worries that he’s been forgotten.

Juan was 9 when he was diagnosed with a rare brain tumor.  Amelia said an oncologist at a children's hospital in Arizona told her Juan had just months to live, even with available treatment.

With treatment at St. Jude Children’s Research Hospital, Juan lived for another six years, each day a chance to create more memories. Amelia is grateful for that.

Juan was 15 when he died on June 8, 2018.

When a child dies, many people are unsure what to say so they say nothing at all. Her family isn’t the kind that talks much about death, not even in whispers. It’s just too sad.

St. Jude patient Juan

Amelia wants to talk about her son. There’s not a day she doesn’t think about him, that she doesn’t wish he still was here.

It’s not true what people say, that it gets easier with time.

She and her younger son, Javier, who’s 13, talk about Juan, wondering aloud if he’d like a movie they’re watching or what he’d think of the latest family news.

“We have to keep talking about him,” Amelia said. “It’s how we keep him from being forgotten.”

Only pictures, a chest filled with his belongings, an urn holding his ashes, and their memories mark that Juan was here.

Amelia had imagined planting a tree in Juan’s memory, maybe a park bench marked with his name where she and Javier could sit and read. For a lot of reasons, those things didn’t happen.

“I want something that will have his name, so he’ll have a legacy,” Amelia said. “So his name will go on.”

As Amelia talks about Juan, of what he was like, the things he did and the people he met along the way, she sinks back in her chair. In telling Juan’s story, she has a sudden and striking realization.

Her son hasn’t been forgotten. Juan did leave a legacy. A living one.

‘There’s something in his head’

Juan had been sick that weekend in July 2012, throwing up and running a fever. By Monday, he was well enough to go to school.

But when Amelia picked up Juan from the after-school program, a staff member told her Juan couldn’t hold onto anything with his left hand.

That night at home, Juan’s left arm went numb. Something was wrong.

Amelia couldn’t afford health insurance, so they’d been to the emergency room before. Sometimes, they’d wait hours to be seen. This time, Juan was rushed to an examination room.

Juan and family

The doctor asked Juan to smile. Amelia watched as only the right side of his face turned up.

It could be a stroke, the doctor said. Amelia stayed with Juan as he was taken for an MRI. “You can’t go back there,” someone told her. She could watch the monitors.

“There’s something in his head,” Amelia whispered to her sister Elizabeth on her cellphone.

In the images on the monitor, Amelia could see a hazy circle next to her son’s brain. The next morning, surgery to remove the tumor relieved the pressure causing weakness on Juan’s left side. He woke up and smiled at his mom, both sides of his mouth turning up.

Amelia wouldn’t give up.

Finding hope at St. Jude

The oncologist referred Juan to St. Jude. Amelia had seen the ads on TV featuring children with cancer. Children who got better.

Within days, Amelia and Juan were on their way to Memphis, the first time they’d been on an airplane.

Juan in hospital bed

At St. Jude, the staff told Amelia they wouldn’t give up either.

While in Memphis, Amelia felt a lump in her breast. She didn’t give it much thought — she was only 26 — and her concern was for Juan. He had a second surgery and received 33 rounds of radiation over two months.

Juan finished treatment in late November, and they flew back to Phoenix. They’d return to St. Jude for checkups, every three months for a year and then every six months.

Juan had kept up in school with help from teachers at St. Jude. He played with Javier and stayed the night on weekends with cousins.

To Amelia, life felt normal again.

It wouldn’t last.

Did she want to know?

Amelia’s doctor sent her for a mammogram — and then a biopsy.

On Feb. 1, 2013, she was diagnosed with cancer, invasive ductal carcinoma, unusual for a woman her age. She had a double mastectomy, chemotherapy, and radiation, followed by hormone therapy to keep the cancer from coming back.

During a checkup at St. Jude in November 2014, Amelia told Juan’s doctor about her cancer. He asked if she would be interested in genetic testing through the Department of Genetics at St. Jude to look at possible hereditary predispositions to cancer. They’d test Javier, 6 at the time, too.

Juan had been tested. The results showed a mutation in a gene called TP53 , which carries instructions for making a tumor-suppressing protein of the same name. TP53 mutations are common in many different cancers and are associated with Li-Fraumeni syndrome.

People with Li-Fraumeni Syndrome have a high likelihood of developing cancer. Half develop some type of cancer by 30. By 60, the risk soars to 80 to 90 percent.

Did she want to know? Amelia asked herself. It could explain Juan’s brain cancer. Her breast cancer. What would it mean for Javier?

The results showed Amelia and Javier had the same _TP53 _mutation.

Amelia couldn’t help but worry. When Javier was 9, throwing up and with a fever, Amelia thought, “This is it. It’s going to happen exactly like it happened with his brother.”

Javier was fine. But it was a reminder of what could happen. It’s always there, in the back of her mind. She tries to keep it there.

“You have to live life,” Amelia said. Juan taught her that.

During a follow-up visit at St. Jude in July 2016, doctors discovered Juan’s tumor had grown back. Surgeons removed it, followed by another 33 rounds of radiation. The next year, Juan was treated at St. Jude for months with intravenous antibiotics for an infection. He was enrolled in two clinical trials.

But in June 2018, at home in Phoenix, Juan had a seizure. The next day, he went into hospice. Amelia never left him.

St. Jude patient Juan

Just before Juan died, only a day after being admitted to hospice, his eyes met hers. Amelia smiled at her son. In that moment, she remembered the day he was born, his eyes locked on hers just like that.

She was the last person Juan saw.

“I was broken, still am, will always be,” Amelia said. “However, I am grateful that St. Jude gave me time with Juan.” Time to make memories. Time with his family. Time she was told he wouldn’t get.

“I cherish every extra moment I had with my son,” Amelia said.

In telling Juan’s story, Amelia realized others also cherished the time they spent with her son. He changed the people he met, taught each of them something. That’s Juan’s legacy.

The nurse

On the living room wall in Virginia Green’s house in West Memphis, Arkansas, 1,434 miles from where the Salas family lives in Arizona, are framed family photos, of children and grandchildren, and of Juan.

Virginia, a nurse, retired now after 39 years, met Juan at St. Jude in 2012. She knew when she met a patient that she had just minutes to connect so that the child would trust her.

Virginia told Juan she wouldn’t start a test or procedure until he was ready. He’d smiled at her, their deal sealed. Juan insisted Virginia put in his intravenous lines. It didn’t hurt when she did it.

Talking to Juan was like conversing with an adult, Virginia said. He wanted to know about day-to-day stuff. How her dad was. Movies she’d seen. Time spent with grandkids.

“He was beyond his years,” Virginia said. “I think cancer causes our children to grow up fast.”

When Virginia asked, “How do you feel today?” Juan would say, “Oh, I’m fine,” even on the days she could tell he was worried or hurting. Juan never complained.

“There were times like that when you just had to hug him and love on him and tell him, ‘We’re just going to take this thing one day at a time,’” Virginia said.

Nurses aren’t supposed to get attached to patients. “It’s hard not to do that,” Virginia said.

She tells her children and grandchildren what she learned from Juan.

“He taught me to do everything in your power to make each day count,” Virginia said. “He taught me to cherish everyday moments.” There’s joy in those. Juan knew that.

Virginia sent Amelia a picture of Juan on her living room wall.

“I wanted her to see that Juan still is in my household,” Virginia said. “I won’t forget. I won’t ever forget.”

The runner

When Nicole DiSturco met Juan in 2014 while working in the Phoenix office of ALSAC, the fundraising and awareness organization for St. Jude, she thought he was brave to speak at the opening of the local St. Jude Walk/Run.

She realized he’d faced tougher challenges.

Juan and Nicole

Nicole admired Juan. He was endlessly patient with his little brother. He was protective of his mom. He was brave for them both.

Nicole was at St. Jude for a meeting in July 2016 when Juan’s tumor came back. She visited him after his surgery.

Juan still was at St. Jude when Nicole ran in the Rock 'n' Roll Las Vegas Marathon to raise money for St. Jude. She texted Juan a picture at the finish line: “This is for you.”

“That’s awesome. Thank you!” Juan texted back. “I love you.”

Nicole still runs for Juan – and Javier, too – raising money for St. Jude in their names.

“I think about Juan every day,” Nicole said. “Not only because I loved him and I miss him and I don’t want him to be forgotten but because he serves as my inspiration to keep going.”

Juan was the first child she knew who didn’t survive cancer. For him, Nicole works even harder.

The cop

Juan Salas leaned close to his young cousin who shared his name and told him, “You will always be in our prayers. No matter what happens, we’re going to love you and think about you. There’s never going to be a day I don’t think about you.”

Juan and Juan

Phoenix Police Officer Juan Salas had been on duty the night he got a call from his mother telling him that his cousin was in hospice. It wouldn’t be long now, she said.

Juan, the officer, was a teenager when his cousin was diagnosed with cancer. They were close, even with eight years between them. The younger Juan stayed the night almost every weekend at his Aunt Susana’s house.

The younger Juan was smart, taking high school algebra in eighth grade. He listened to his older cousins’ conversations, taking it all in. He learned to play their video games and got good quickly.

He wanted to do what they did. Except when they came up with some antic, something that could get them in trouble. “Nope,” he’d say, “don’t do that.”

“He was kind of watching out for everybody,” the older Juan said.

The younger Juan didn’t want anything to change. Pretend I don’t have cancer, he told his cousins. “I’m a normal kid. I’m just living my life,” he said. “Let’s just keep living.”

When Juan became a police officer in 2016, his young cousin gave him a coin he bought in the St. Jude gift shop. On one side was a police badge, a prayer on the other.
“It’ll protect you,” young Juan said.

Juan put the coin in his wallet next to his badge.

The night his mother called, there was no pretending young Juan didn’t have cancer.

At his bedside, Juan opened his wallet, pushed aside the coin, and took out his badge. He tucked it in his cousin’s hand.

“He should have it,” he told Amelia. Juan was braver than anyone he knew.

Juan thinks of his young cousin every day.

“I have to use what he taught me,” Juan said. His cousin didn’t let anything get him down. Not even cancer. “He smiled through tribulations he had to endure and reminded his family that we were what mattered most to him,” Juan said.

He tells his son, Nehemiah Juan, who’s almost 2, about his brave young cousin.

“For me and for Juan, I’m raising my son, and I’m teaching him Juan’s ways,” Juan said. “I want him to be just like Juan.”

The supporter

Heidi Guest was touched when Amelia asked her to give Juan’s eulogy. She knew theirs was an unlikely friendship, an 11-year-old boy and beauty industry executive 41 years his senior.

“We were kindred spirits,” Heidi said, “and we both knew it.” Instantly.

Heidi, an on-air regular on the shopping channel QVC and longtime St. Jude supporter, met Juan in 2014 at a rally for the St. Jude Walk/Run at a Phoenix bowling alley.

Juan and Heidi

“Of all the people who spoke that day, Juan had the greatest level of grace,” Heidi said. Watching him, she thought, “This kid is going to be a star.”

“He talked about his St. Jude journey with reverence and respect, but it was not his life— it was his circumstances,” Heidi said. “He refused to let those circumstances define him.”

She remembers just one time when Juan’s circumstances, the weight of it all, made him falter. It was a year later at another St. Jude event.

Juan began speaking and then stopped, his voice catching. Heidi stood up, but before she could take a step, Amelia was beside her son. She pressed her hand against his back. Juan continued: “We’re put in this role, but it isn’t who we are.”

Juan loved books, especially Greek mythology, videogames, and math. He wanted to be a teacher.

The two families spent time together. Heidi’s husband promised to teach Juan to drive.
Her son, Nick, tutored Juan, though more often, the boys went for burgers and to the movies. “Mom,” Nick told Heidi, “Juan just needs to be a kid.”

Juan’s favorite superhero was The Flash. He’d roll his eyes because Heidi couldn’t remember which superheroes were Marvel Comics and which were DC Universe.

Heidi was in Philadelphia, filming at QVC, when her husband called to tell her Juan was in hospice. She took the next flight back.

At Juan’s bedside, Heidi recited which superheroes were Marvel Comics — Spider-Man, Iron Man, Captain America — and which were DC Universe. Batman. Wonder Woman. The Flash.

Juan didn’t open his eyes, but he smiled. She’d finally got it right.

Juan’s eulogy was surprisingly easy to write. Heidi had learned so much from Juan.

“In just 15 years, Juan left an incredible legacy and many lessons,” Heidi told the crowd in the Serenity Chapel at Greenwood Memory Lawn in Phoenix on June 14, 2018.
“Namely, how to comport yourself with grace, love and acceptance, even when life isn’t fair, even when life is downright cruel.”

Don’t complain. Juan never did. Lead by example. “It isn’t what you say,” Heidi said. “It’s what you do.” Cherish your family and friends. Don’t let your circumstances, however dire, define you.

“I would like to propose that we honor his memory by adapting his approach to life, not just a life well-lived but a life well-loved,” Heidi said. She has. It’s how she honors her friend.

The brother

Javier was 4 when his brother Juan was diagnosed with cancer. He grew up with it.

On the days Juan didn’t feel well, Javier stayed close to him. If Juan didn’t feel like talking, Javier told him, “Just lift your finger. Up for yes, down for no.”

Javier never believed Juan would die. His brother had always been there.

Juan and brother Javier

On Javier’s first day of kindergarten, Juan, then a worldly fifth-grader, walked him to his classroom and hugged him.

“I don’t want to go,” Javier mumbled into his shirtfront.

“It’s a thing you have to do, buddy,” Juan said. Juan promised he’d like school.

At home, Juan would ask, “Do you have homework?” No, Javier responded automatically.

Juan would rummage through Javier’s backpack. “What’s this then?” he’d ask.

Juan kept Javier out of trouble. He nudged him to sit still in church. If Javier spilled cereal on the kitchen floor, Juan would say, “Oh, sorry, Mom, that was me.”

“He wanted me to be successful,” Javier said. “He was my big brother. We loved each other. We had a bond.”

At the beach in Mexico, the boys jumped in the waves, side-by-side. They played video games and watched cartoons together.

A friend made Juan’s favorite cartoon character T-shirt into a pillow. Javier keeps it on his bed.

“I’ll never forget him because he was an important person in my life along with my mom,” Javier said. “I’m going to remember him.”

Juan taught Javier to make quesadillas — and more.

“I learned about staying positive, thinking about being kinder to everyone and to be grateful for my family,” Javier said.

In some ways, he’s like his brother. He’s kind to classmates and settles squabbles between his cousins. He works hard in school. He wants to be a doctor, like the ones at St. Jude who can make even the sickest patients smile.

Javier knows his chances of getting cancer are higher. He doesn’t think about it much.

“You can’t live life that way. If something does come up, I will accept it,” Javier said. “I’ll be like my brother.”

That’s part of Juan’s legacy, too. Because of Juan, Javier is a St. Jude patient as part of a study. Twice a year, he undergoes scans and lab work at St. Jude so if any cancer develops, doctors will catch it early.

What St. Jude researchers are learning from genetic testing from patients like Juan could mean his legacy also includes saving children he never met. Juan's legacy may even include saving his brother.

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