GTPulse: A Rock Star With a Heart of Gold

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Erin McKee Reyna started 2020 like the rest of us. She toasted the new decade, hopeful for what was on the horizon, not knowing the collective chaos COVID-19 would bring. Not knowing the personal challenges headed her way.

Erin is no stranger to adversity. Throughout her life, she has experienced more than her fair share.  However, with a strong will and relentless determination, she and her children have managed to come through each hard time a little stronger, a little wiser and armed with a new layer of boldness, worn like a battle scar to intimidate the next curveball thrown their way.

On June 1, though, it was more than a curveball being thrown at the Reyna family; it was nothing less than a parent’s worst nightmare.

“Lexi had been complaining that her arm hurt. It had been about a month or so, and she wasn’t complaining all the time, just maybe once a week.”

Erin pauses a moment, and I realize that between giving me answers, she is instructing a repair man about a broken furnace, and patiently answering questions posed by her son, who is on the autism spectrum.

“I’m sorry; where were we?” she asks, and then quickly answers her own question as she continues her train of thought. “So, on June 1, we took Lex to the emergency room after her arm wouldn’t stop hurting. And, it was immediate. We knew something was very wrong.”

A few hours later, after spending the night at Munson Medical Center, Lexi and her family were on their way to the DeVos Children’s Hospital in Grand Rapids, checking in to the pediatric oncology floor. Lexi’s diagnosis was osteosarcoma, a rare bone cancer, and would begin chemotherapy right away.

Erin was instantly flooded with information. Her mind swirled with treatment options and survival rates. She spent her days comforting her daughter after chemo treatments, speaking with doctors and nurses, juggling the caretaking demands of her special needs son, and riddled with guilt for not being able to be two places at once.

“I need to be here, I need to be with her, but I know he needs me, too. I need to be with him, too, and it’s all just so impossible.”

Still, Lexi’s spirit shone through, and even in these uncertain times, her generous heart was on display.

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“I know all parents adore their children—I adore all of mine—but Lexi is truly special. She’s always thinking of other people and their needs. She’s the first to volunteer to help. She never puts herself before others. She just has a heart of gold. Truly. She’s always had a heart of gold.”

Even the way Lexi was coping with her own illness was a benefit to those around her. “We would be waiting in her hospital room, in between chemo treatments, and, when she felt up to it, she would pull out her guitar and sing. People would line up in the hallway to listen to her. I think it was therapeutic—for her, of course—but also for the other kids and their families. Even the doctors and nurses.”

Erin sent several videos of Lexi playing her guitar from her hospital room, and I was moved to tears watching her depiction of strength. Lexi’s hair has fallen out, her skin is pale with fatigue, but her voice is full. It is firm and commanding as she ironically belts out the words, hammering the chords, of Imagine Dragons’ ‘Radioactive’ in between cancer treatments. “I think it was her way to feel normal,” Erin tells me. “She’s in this hospital bed, she has tubes and monitors attached to her body, but she gets to be a little normal just playing her guitar.”

Even with the chemotherapy, the bone cancer had consumed Lexi’s humerus, the long bone that runs from the shoulder to the elbow. Two weeks ago, doctors had no choice but to remove the entire bone. For Lexi, it means she can no longer play her guitar.

“That’s been the most infuriating thing for me.” Erin’s voice wavers, thinking about yet another loss for her daughter. “This cancer has taken so much from her. She’s just turned 15, she has her whole life…” Erin trails off for a moment before collecting herself. “And, now it’s taken her guitar. Lexi has the use of her fingers, but without a humerus bone, she can’t play the guitar. It’s just heartbreaking to watch her go through this.”

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We sit on the phone in silence for a moment. The helplessness of a parent forced to watch her daughter fight a battle is a hideous sentence, a sentence that is palpable, even through our cell phone connection. I keep telling Erin that I cannot imagine what she is going through. That I can’t imagine the pain she must be feeling, but the truth is, I don’t want to imagine it. Even imagining it is too painful. I think of my sons, my youngest just a few months older than Lexi, and my heart sinks.

Erin begins to tell me the latest development in Lexi’s story, that the cancer has metastasized, leaving dozens of small tumors in her lungs.  “The prognosis…isn’t good, and Lexi understands that, but she is nothing but positive. She has such an amazing spirit.”

Doctors and specialists are calling Erin personally to discuss the next steps, the next round of chemo, the percentages, the survival rate. “And, here we are in a pandemic and I am trying to keep her safe; her immune system is basically nothing right now, but I also want her to have everything she wants. I don’t want her to miss anything, in case…” Erin stops herself, clearing her throat, and returns her focus to Lexi’s spirit. “She never says ‘if.’ It’s never ‘if I get through chemo.’ It’s always, ‘when I get through chemo, and when I’m better.’”

Once again, silence.

I begin to ask another question, but Erin speaks first.

“If there is anyone who can beat these odds, it’s Lexi.”

We’re quiet again, and I start to ask Erin a question that has been lingering in my mind throughout this conversation. It’s a question, I’m sure, that every parent wonders when they hear about a parent struggling to cope with a very sick child.

“How,” I say and instinctively, Erin finishes the question,

“How am I dealing with this? Yeah, I don’t know,” she laughs.

It’s an honest laugh. An overwhelmed Mom laugh. The kind of laugh that could quickly turn into a whimper and a full on sob if left unchecked.

“It’s not day to day,” she continues, “it’s not even hour to hour. I think it’s minute to minute. I think I am dealing with this for sixty-seconds at a time. And, after the sixty-seconds, I think, ‘okay, that wasn’t so bad,’ and I do another minute.”

Sixty seconds at a time.

Thirty-six hundred seconds an hour.

Eighty-six thousand, four hundred seconds a day.

Erin has checked on Lexi at least a dozen times during our phone conversation. This time, she’s awake. She asks if Lexi would like to speak with me for a minute, and Lexi agrees. Her voice is quiet as she’s just waking up, but even so, I can hear her strength through the weariness.

We talk about her love of the Blair Township Park and how she hopes to get back to being on the Park Patrol.

We talk about chemo and she says it’s hard to describe what it actually feels like.

She tells me she thinks she got her positive attitude from her Mom. I smile.

We talk about music.

We talk about her favorite bands—a tie between Blink 182 and Hollywood Undead—and I say she’s a rock star.

She laughs, too humble to agree, but, it’s true.

Alexandra Reyna is a rock star.

And, she’s fighting to come back onstage for a second act.

Notes:

A GoFundMe page has been set up to help the Reyna family through Lexi’s journey. You can support the family by donating and/or sharing the link on your social media page.

Lexi’s love of playing guitar can possibly return through adaptive equipment. The Reyna family is looking for help finding her the right equipment for her unique needs. If you have knowledge about adaptive musical instruments, you can reach out to Lexi’s family through the GoFundMe page.

Categories: GTPulse