Bone marrow transplant next step in Barbosa’s battle with Leukemia

Some mornings, Decatur senior goalkeeper Jose Barbosa wakes up to a “bad day.”

On these days, he’s greeted by bones so sore, so tender, he’s afraid to move. It’s the kind of day that makes it feel as though the chronic myeloid leukemia coursing through his bones since February 2016 has turned them into flimsy toothpicks, ready to snap at any moment.

The oral chemotherapy regiment Barbosa has taken this last year has helped spread these bad days apart. And Barbosa hopes days like those, which have become all too familiar, are gone for good when he goes in for his bone marrow transplant/transfusion Wednesday at Seattle Children’s Hospital.

If all goes well, Barbosa’s remission and cure rate will jump to 85 percent or greater. But even prior to his impending surgery, Barbosa has greeted his cancer with a smile and champion-like attitude. Barbosa has routinely fought through bad days to make sure he’s between the goal posts for the Gators, and his dedication on the pitch has helped lead Decatur to its first postseason birth since the 2013-14 season.

“I know I have two choices in this whole thing,” Barbosa said. “I can be down about it and how hard it has been, or I can go the other way and tell myself I can do this, get through this. I can fight this, no matter how hard it is.

“That’s the route I’ve chosen. I have to show my family, my friends, the person I am. I’ve used it as motivation to push me harder than I’ve ever been pushed before.”

It’s just the flu

February of 2016 brought with it perfect training weather, and Barbosa took advantage of it.

Club tryouts were around the corner, and after a car accident in 2015 put an end to his hopes of any club soccer, he trained extra hard for the upcoming season.

But one day, Barbosa woke up not feeling well.

He began feeling tired and felt as though his mind and body were out of sync. Days later, the fatigue grew worse. Barbosa and his family simply chalked it up to a case of the flu.

“I started getting a lot of fevers,” he recalled. “I’d get one, break it. Another one would come along and so on.”

When Barbosa’s body rejected over-the-counter flu medication, and he felt so nauseated and dizzy he wouldn’t dare stand, however, the family decided to see a doctor.

At first, his doctor also thought it was a bad case of the flu.

Before the exam wrapped up and he was sent on his way, the doctor strangely asked if Barbosa was experiencing any kind of pain, and that’s when he remembered the soreness he’d felt in his abdomen.

Barbosa didn’t think to mention it because, as an athlete, he spends countless hours training and in the gym. It certainly wasn’t the first time he’d experienced muscle soreness.

After hearing that news, the doctor told Barbosa to take a seat. Approximately nine hours later, he had an answer — leukemia.

And not just any leukemia, either. Barbosa was diagnosed with chronic myeloid leukemia, which, according to the Mayo Clinic, rarely occurs in patients younger than 40.

“Is this really happening right now?” Barbosa recalled of his reaction. “Why would this happen to me? This is just so random. It took me a couple minutes to realize what was happening.”

A new friend

Doctors referred Barbosa to the Seattle Children’s Hospital, where he would later meet pediatric hematologist-oncologist Dr. Rob Irwin.

Irwin was shocked to discover just how positive and determined Barbosa was to face his challenges head on.

“Working with Jose is — easy because he’s always got a great attitude, and he always does what is asked of him [with his treatment],” Irwin said via Facebook video.

The two hit it off immediately as Barbosa began his chemotherapy treatment, Feb. 29, 2016. Barbosa saw Irwin almost every day early on, and the two grew close. Soon, Barbosa began to see Irwin as an idol.

It was Irwin’s demeanor and caring attitude upon that first visit that not only drew Barbosa to Irwin but also helped fuel a passion for a career in medicine.

“Before I was even diagnosed, I knew I wanted to go into the medical field but was super indecisive about where,” Barbosa said. “Once this happened, I met him, and we’ve spent a lot of time together. I got to see that he’s just a super good guy. Now, I want to be just like him, a hematologist-oncologist. Because of him, that’s where I want to go.”

With a treatment plan in place, Barbosa faced one of his toughest challenges — telling his Decatur High School soccer brothers what was going on.

The first to know was junior midfielder Juan “Chapo” Iribe.

The Barbosa and Iribe families have been close friends for many years. Barbosa and Iribe grew up playing club soccer together and made sure they both played together at Decatur.

Barbosa called his “little brother” over to the Barbosa home to deliver the news.

“We talked about the good journey we built with a lot of good memories,” a tearful Iribe said. “We’ve gone through tough times with this, but we’re getting through them together. We’re being positive and looking forward.”

Next Barbosa called a team meeting on March 3 to deliver the news that he would have to miss the entire 2016 season in order to fight the cancer.

Decatur manager Brad Plemons, who was a volunteer assistant coach at the time, remembered the impact Barbosa’s message had on the team.

“I think it was tryouts, like, not the first day, but the second day,” Plemons recalled. “I remember him coming on to the field, I didn’t know who he was, he told everybody and everybody’s head went down.

“The general feeling was ‘how was this possible?’ Seriously, how was it possible an athletic, healthy young adult male – how does he get leukemia? It’s not fair.”

The hardest fight

Barbosa called the team meeting just three days after starting oral chemotherapy with Irwin.

He had two choices: Barbosa could immediately undergo the necessary bone marrow transplant required to fight the leukemia, or he could start with a pill form of chemotherapy.

Barbosa wanted to initially do the transplant, but it was after hearing the fear and concern in his parents’ voices that he decided to start with the pill.

“They were super-scared,” Barbosa said. “They pleaded with me not to do the transplant first. I honestly did the oral chemo because I could see how hard the transplant process was on them, so I did the chemo first in hopes that it would ease their worry.”

Barbosa ingested his first chemotherapy pill on the morning of March 1.

After just a few seconds, Barbosa became aware of just how hard this fight would be.

“I took it that Monday morning, and I remember I just started vomiting everywhere,” Barbosa recalled. “I felt it immediately. I felt so bad, so weak. My body was super hot. My bones hurt. I couldn’t move even if I wanted to. I took it and threw up like three seconds later. It sucked.”

Irwin recommended Barbosa take the pill in the evening after the bad experience, with the hope he would sleep through the nausea.

It didn’t help much since the routine fevers returned. Over time, however, Barbosa’s body managed the pill, and he began to feel less nauseated.

Barbosa then had to come to grips with going to school and soccer practice despite severe bone soreness and fatigue.

“I’ve gotten good at hiding the bad days,” Barbosa said. “I just don’t like people treating me differently. I don’t want people to look at me different, and I don’t want to be babied. I want to be like any other person.”

Barbosa’s advanced placement sophomore and junior-year chemistry teacher Steve Klein noticed one of his brightest students wasn’t himself. He was quiet and seemed distracted, which was out of character.

When Barbosa told Klein about the cancer, Klein was heartbroken.

“This is just so unfair,” an emotional Klein said. “He’s the kind of kid who does everything he’s supposed to do, the right way, and this kind of thing happens.

“It’s just not fair. He’s got a tender heart, and early on you could tell it was really bothering him, but he’s taken it with such a champion heart.”

On bad days, Klein has pulled Barbosa into his room to let him rest if he needs it or talk, just for the sake of talking.

“A lot of times I’d go to his room and just talk about how my day’s going,” Barbosa said. “He’d always tell me that he’s there for me. If I need something, he wanted to be the first person I went to. For my bad days, he told me I could go to his room. He’s been so incredibly helpful.”

The time has come

Barbosa moves to Seattle on Wednesday to being his bone marrow transplant treatment. If successful, the surgery could end Barbosa’s long fight with the cancer, with the odds of remission 85 percent or greater.

The aftermath will be the hardest part of Barbosa’s journey.

He goes into quarantine sometime between the May 20 and May 26, where he will experience all the symptoms of traditional chemotherapy. He will feel nauseated. He will lose all of his hair and his immune system will be extremely compromised.

Barbosa isn’t scared about the upcoming surgery; he’s only focused on being cancer free.

Despite Barbosa’s need to be alone for that first week, he won’t be alone at all — “Chapo” won’t allow it.

“From the first day he was in the hospital until now, I was there,” Iribe said fighting back tears. “I’ll be there for this treatment. I’m not going anywhere. We started this together, and we’re going to beat it together.”

It’s possible Barbosa could be available for Decatur’s district playoff game(s), but he would not be available if the Gators went into the state tournament.

Barbosa is typically the last voice the team hears before and after every game. With Barbosa’s impending absence, senior co-captain Angel Trejo-Delgago might have to fill that role.

Or, Plemons said he may put Barbosa on speaker phone to deliver his game-day message because just the sound of Barbosa’s voice is paramount to the program.

“His voice is so important, no matter the words,” Plemons said. “If he’s up to it, we still want him talking to the team before and after state playoff games if we make it that far.”

Barbosa doesn’t view his posible absence as a lost opportunity at all. Instead, it allows him to focus on his other dream of going to the University of Washington as a pre-med student, hoping to take over Irwin’s work with pediatric cancer patients.

“I start college in September, so I really want a new, fresh start for college,” Barbosa said. “I just want to be OK and ready to go. It’s going to suck, not playing, but I have all the confidence in the team. This is a team sport, and I’m just one member of the team.”

Barbosa remembers the bad days. He remembers having to fight through them during games this season and exams. He remembers them and smiles.

They are a part of his journey.

Barbosa has spent a lot of time walking the halls of Seattle Children’s Hospital in the last year. During that time, he’s come across children much younger, with far more aggressive cancer than his.

Visiting with them during Irwin’s rounds, Barbosa has come to realize that maybe bad days aren’t bad, at all. They’re simply teaching moments for when he inherits patients of his own.

“It’s opened my eyes to the people going through really hard times,” Barbosa said. “Like I went through some really hard times, but there are people out there going through far tougher times than I am. Not everyone gets good days like I do. It reminds me to always stay humble and try to help whenever you can.”

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