What are the odds of a life like Landon Powell's -- one as gifted, exciting, discouraging, tragic and blessed? It's only natural to wonder, since Powell is a catcher for the Las Vegas 51s in the Triple-A Pacific Coast League. Nobody would have bet on it, especially his wife.
"I never thought I would have two kids and live a block from the [Las Vegas] Strip," says Allyson Powell.
"At this point in my career, it's not about making money -- it's not about glorifying myself," Powell told "E:60." "At this point, it's the opportunity to tell her story and tell my story and the things I've been through, and how you can overcome anything and tomorrow's always a new day."
"Her" story is that of Isabel "Izzy" Powell, who suffered from hemophagocytic lymphohistiocytosis (HLH), a rare disorder of the immune system. Izzy's courageous fight to survive was chronicled on a Facebook page, Prayers for Izzy, started by her parents, Landon and Allyson. Izzy's parents thought of her as their "warrior princess" because of her spirit and strength in the grips of a relentless disease.
But on Jan. 26, the page announced her death, at 4½ months:
Izzy went to be with her creator yesterday evening. She fought until the end and squeezed my hand tight until she left. My heart is broken, but I am blessed to know she is healthy and whole in heaven. I like to think she is twirling around and singing. The bible says "children are a heritage from The Lord ... like arrows in the hands of a warrior. Izzy was our warrior princess, our arrow in a spiritual battle here on earth.
The Facebook post, which reflected the deep spiritual faith of Powell and his wife, logged 26,282 likes, 5,107 comments and 2,149 shares. Overall, Prayers for Izzy has 38,686 likes.
A doctor who treated Izzy at Cincinnati Children's Hospital, Michael Grimley, holds on to a memory of Landon Powell and his dying infant.
"It was always quite striking to see him holding her because she just disappeared into his arms," said Grimley. "She seemed to have him completely wrapped around her finger very quickly."
In death, Izzy was an organ donor. She gave a heart valve and cartilage.
HLH affects about 1 in 50,000 babies born in the U.S., or fewer than 100 per year. Those odds alone tell you something about Landon Powell's own story.
From the start, he was an outlier. As a Little Leaguer near Raleigh, N.C., he was the only player on his team able to catch a wild lefty -- future slugger Josh Hamilton.
He was so gifted as a high school player that his father arranged for him to take his GED early, skip his senior season, enter the 1999 draft and -- through a loophole in the rules -- become an 18-year-old free agent. Powell's father also arranged for agent Scott Boras to represent his son. The gambit spiraled into a public relations disaster, and no team signed Powell. He became a poster boy for greed.
"It kind of morphed out of what we were trying to do into a whole different thing and then it got into a contest between lawyers and Major League Baseball -- was his GED legal and all that stuff," recalled Ron Powell, his father.
For Landon Powell, the experience was bitter.
"As an 18-year-old seeing your name in USA Today with the headline 'Greedy High School Kid Seeks Big-Time Dollars' -- it started to affect me," Powell recalled. "It was like, Wait a second, that's not who I am.
"So I think I came to the point where I was tired of being a puppet on a string. Whether my dad was obviously trying to have my best interests in hand, or Boras, or whoever, it was difficult for me to sit there and have all these people make decisions about my life."
Powell decided to graduate ahead of his high school class, and in January of what would have been his senior year, he enrolled at the University of South Carolina. He went on to lead the Gamecocks to the College World Series finals in 2002 and was taken in the first round (24th overall) of the 2004 MLB draft by Oakland. At that point Powell and Allyson, whom he met in college, anticipated a jackpot of wealth and fame.
"It was exciting and kind of crazy and I thought it was going to be this glamorous, wonderful, easy lifestyle where things are paid for," Allyson recalled.
Powell met expectations in his first minor league season. But early in 2005, just a few days before his first major league camp, he played indoor Frisbee and tore the ACL in his left knee. The injury cost him a full season. He came back in 2006 and once again performed well. In 2007, he was promoted to Triple-A and was on a trajectory to Oakland when the repaired ACL in his left knee tore. Surgery and rehab cost him part of the 2008 season. When he returned to action, he damaged cartilage in the same knee as he ambled to first base after drawing a walk, short-circuiting a call-up to the A's.
Early in 2009, Powell was stricken with autoimmune hepatitis, a liver disease with an occurrence rate of 1-2 per 100,000, and for which there is no known cure. When he was stricken, Allyson was pregnant with their first child, Holden, and Powell came to a realization.
"I went home to rehab my body but also my heart, and that was one of those defining moments when I realized my life is not about baseball," Powell recalled. "I mean my life is about so much more."
At the onset, the disease left him severely weakened. With treatment and rest, Powell was able to go to camp and win a spot as the A's backup catcher. His ascent to the major leagues was coupled with the understanding that his liver would eventually fail and he would need a transplant. In 2010, while Powell held his spot as the A's backup catcher, he and Allyson founded the Donors on the Diamond charity event, in partnership with the nonprofit Donate Life South Carolina, to promote organ donation in South Carolina.
I went home to rehab my body but also my heart, and that was one of those defining moments when I realized my life is not about baseball. I mean my life is about so much more.
"-- Landon Powell
For three seasons, Powell was a solid defender who hit .207 with 10 home runs in 363 at-bats, but after 2011 the A's cut him loose. In 2012, he signed with the Astros and played at Triple-A Oklahoma City.
On Sept. 10, 2012, Allyson gave birth to twin girls, Ellie and Izzy. Diagnosis of Izzy's HLH, and her intensive treatment, coincided with Powell's release by the Astros. With free agency came a loss of insurance coverage. He signed up for COBRA coverage, at about $700 per month, as the bills for Izzy mounted.
The overall cost, Allyson says, "is in the millions ... and we get new bills every day." One bill, covering one of the last days of Izzy's life, came to $360,000. Insurance does not want to pay for the ambulance and airplane that transported Izzy from South Carolina to a hospital in Cincinnati. Their share, she said, ultimately will be in the "tens of thousands" even though they had thought their maximum out-of-pocket per dependent was $1,500.
"I think what's so difficult is it kind of hangs over your head," said Allyson. "Bills just keep coming in every day, and I don't know when they'll stop. ... My greatest fear would be that the bills would be too much and we lose our house or we'd lose what we worked for for so long. But I'm staying positive. I'm pretty confident we'll be able to take care of it."
Izzy's illness, and medical bills, added a new urgency to Powell's career. As a major leaguer he would earn $665,000, pro-rated, while his minor league pay is $100,000.
Powell signed a minor league contract with the Mets in January, about a week before Izzy's death. In the midst of his grief, the new job offered a shred of solace. It provided "a fresh start," as Allyson put it, somewhere to go, a way to clear their minds, and it gave them all-important health insurance. Minor league insurance is comparable to major league coverage, except minor leaguers have to shell out a portion of premiums on dependents while major leaguers do not.
Powell went to the Mets spring camp motivated to win a spot on the major league roster, but he did so with grave concerns. His two surviving children, 3-year-old Holden and 8-month-old Ellie, are considered susceptible to the type of HLH that was fatal to Izzy. Each child has a 1-in-4 chance of getting the disease because both parents are carriers of the gene. Of particular concern is Ellie, because 70 percent of familial, or genetic, HLH cases manifest in the first year.
"Babies get rashes, so we're looking at Ellie and I'm like, Is Holden OK? Is his nose running?" said Allyson. "I'm told any kind of fever can bring it out in him, so we're on edge with all of that. Always, constantly."
Results of tests on the two children are not yet completed. If HLH is diagnosed in either child, he or she would undergo a bone marrow transplant, a procedure that could not be carried out on Izzy because she was too weak. Bone marrow recipients have a 70 percent survival rate for HLH.
Said Landon Powell: "Hopefully, they'll just give us a phone call and tell us everything is going to be OK. For Allyson and I, it's terrifying to know that the phone could ring and it could be bad news. I found it best not to go there, and I try to convince Allyson the same thing, which is to take this one day at a time and not even think about that."
Powell went to camp with concerns about himself as well. He needs another year and 19 days of major league service time to reach the four-year mark -- a threshold that would qualify him for a lifetime of major league health insurance. With his autoimmune hepatitis, its daily medications and the likelihood of a liver transplant, the major league retiree coverage, which has a cost-sharing component, would ensure quality treatment. The imminent arrival of Obamacare, while shrouded in uncertainty, could answer his needs.
While at camp, Powell reflected on the chronic uncertainty of his life -- the roll of the dice.
"I've spent a lot of my life in limbo, not knowing what tomorrow is going to bring," he said. "The knee injuries, the liver disease. Could I overcome those? And then obviously with Izzy, not knowing if she would make it to the next day. ... As a catcher, mentally, you take it pitch by pitch and out by out, and what's happened has already happened, and all I can do is move forward."
At the end of March, the Mets sent Powell to Las Vegas to share time with two younger catchers, 24-year-old Travis D'Arnaud and Juan Centeno (23), while John Buck (32) and Anthony Recker (29) hold down the big league jobs. When "E:60" caught up with Powell in late April, he vowed that Izzy's medical bills will be paid, over time.
"If we have to downsize our house or live a little bit more modestly, then that's something we'll do," Powell said. "We're out here right now in Vegas living in a [small] apartment and making it work. Family is what makes us happy and loving each other, not the possessions and things we have."
As for his own fate, he seemed sanguine.
"After going through everything I've gone through with my knees and liver and my family, I learned long ago that baseball doesn't define me," Powell said. "If I never played another game in the big leagues, I'll be OK."
As of May 14, in 48 at-bats, Powell is hitting .188 with one home run and two RBIs.
Steve Marantz is an "E:60" researcher. Producer Vin Cannamela contributed to this report. Friends of Landon and Allyson Powell have set up a foundation to help pay Izzy's medical bills: For Izzy's Fight, P.O. Box 27263, Greenville, SC 29616.