Teen defers dream while fighting cancer

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Alex Santiago felt called to be a member of the military. A proud member of the U.S. Marine Corps hopefully, just like his grandfather.

But for Alex, that childhood dream has been deferred by cancer.

Just when he was within 7 pounds of his goal weight to join the service, he and his parents, Felix and April Santiago, got the devastating diagnosis: acute lymphoblastic leukemia.

“I wasn’t myself,” Alex said from his bed in the hematology-oncology unit at Riley Hospital for Children last week. “I started sleeping all day and getting sick.”

One day back in April, he remembers feeling cold, so he thought a hot shower would do him good. But once the water hit him, he felt dizzy and collapsed. His dad found him and took him to the small hospital near their home in Akron, Indiana (population 1,000+).

April Santiago said doctors there told her his hemoglobin level was well below normal, indicating severe anemia. They gave him two units of blood and transported him via ambulance to a larger hospital in Fort Wayne.

Tests revealed the worst. The next day (April 19), Alex was flown to Riley in Indianapolis in critical condition. He was placed on a ventilator and spent the next several weeks in the pediatric intensive care unit at Riley, as doctors worked to stabilize him and find a chemotherapy regimen that worked for him.

That’s where PICU nurse Kelsi Lawless met the teen.

“He has come such a long way, it’s amazing,” she said. “It is truly remarkable to see how he has pulled through.”

With the exception of a couple days on the oncology floor, Alex spent 65 days in the PICU, his mom said, due to complications from his treatment. While there, he formed strong bonds with the nurses and therapists who he said made him feel less alone during a scary time.

Asked what he remembers from the PICU, he said, “Always having someone there for me even when mom and dad weren’t there. They always made me laugh.”

As a mom, April appreciates that more than she can say.

“The nurses here have such big hearts,” she said. “He was really scared, especially when he came back up to 5 (oncology) and he knew he didn’t feel good. He felt defeated when he went back to the PICU. They comforted him and did things like a dance-a-thon, they talked to him and brought in movies.

Lawless says his strength and his family’s support have made all the difference.

“He has been able to make big strides and is continuing the journey with his treatment,” she said. “He’s just one of those kids that you are in awe of because you have no idea how someone can be so strong.”

Now back on the oncology unit, Alex, who is under the care of oncologist Dr. Allison Yancey, is slowly making his way through treatment and trying to keep his head up. The former football player who graduated from high school last year has lost weight and muscle mass since he was diagnosed, so even participating in physical therapy is difficult because he is so weak.

That’s why when April saw her son work to reposition himself in bed by himself, she nearly cried. A small step, perhaps, but it was huge to her.

Oncology nurse Kayla Surface gave Alex a little pep talk when she stopped in his room to give him his medications last week.

“I’m doing good,” Alex told her, “but I’m tired of hurting.”

“I know that when you’re in pain it’s easy to get caught up in that,” she said. “But look at all you’ve done. You seriously have come so far. We are so proud of you.”

His friends in the PICU and oncology have signed shirts and banners for him, celebrating his 19^th birthday in June and offering encouragement. He posted his story on Snapchat, and word got out, leading to a flood of support from people around the world, including the Mikey’s Way Foundation.

“He has taken a few steps back, but we are making it out this time,” April said, hopeful that after Alex finishes this round of chemo, he can rebuild his strength in rehab, then go home for a couple weeks before starting his next treatment.

“This hospital has been amazing to all of us, just a very big blessing to us and we’re glad that he’s here.”

Last weekend, Alex got to take a short trip outside his room to go back to the PICU, but this time it was on his terms. He just wanted to say hi to his friends there and thank them for helping him during his darkest days. He brought a poster board with him decorated with words and signs of appreciation.

The past few months haven’t been easy by any means, but April said she feels blessed to have her son at Riley.

She remembers how she felt when she and her husband received Alex’ diagnosis in Fort Wayne and then learned that he needed more care than they could provide.

“When you hear that, as a mom, you’re like, what do you mean you can’t take care of my child,” she said. “I broke down and fell to the ground. But they brought him here, and I could not have asked for a better team to help him.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org