Kansas City's 'Virtual first-pitch' kid gets the greatest gift of all -- a donor match
SEP 06, 2013 1:49p ET
"They'll be part of my family," Mike LeGrande says of the anonymous individual slated to donate live-saving bone marrow to his son. "There are no 'ifs' or 'buts,' I'll want to meet them. Nick, me and our whole family ... it'll be just a given that we're blood brothers."
Nick LeGrande, a 14-year-old from the Kansas City suburb of Lake Lotawana, Mo., drew national headlines this summer when -- with the help of Google Fiber and Children's Mercy Hospital -- he tossed a "virtual" first pitch from Kansas City via a telerobotic link at O.co Coliseum, Oakland's home park.
In January, the teen had been diagnosed with aplastic anemia, a rare blood disorder that halts the production of bone marrow. As a result, his body had stopped effectively producing red blood cells, white blood cells and platelets, sapping his energy, his resistance to disease and, more important, his ability to clot.
The family's first hope, that a marrow donor could be found within the blood line, struck out. Neither of Nick's brothers was a genetic match. That meant trying to find a donor from the national registry; of the 12,000 trying annually to find a marrow match through donations from strangers, roughly half usually work out.
It was thought weekly platelet transfusions and immune-suppressive medications would stem the tide, but a July checkup at Mercy became a good news/bad news deal. Tests revealed that the effectiveness of Nick's marrow had plummeted from 15 percent to just 5. The drugs were barely stemming the tide at all.
"(The doctors said), 'It's done, it's nothing,'" Mike recalls. "That kinda hurt."
Crestfallen, the family braced for another slap when one of the specialists pulled out another file, barely containing a smile in the process.
A donor from the national registry was waiting for Nick, a perfect genetic match. And there were two more waiting on the runway if that one didn't happen to pan out.
"And I was just shocked," Mike says. "I was just blown away."
It was Christmas in July. Tears, then joy, then more tears. Mike was so emotional, understandably, that he had to leave the room for a spell.
"For eight months, it's just kind of numbed down -- it's weird," Mike says now. "You just kind of quit feeling, almost. Everything's either really down or, when you get good news like that, it's exhilarating."
Nick, who recently started his freshman year at Lee's Summit North High School, is scheduled to undergo a transfusion with marrow from the donor -- who, Mike discovered this week, is a 24-year-old male from Europe -- at midnight on Oct. 15.
"If, months later, we still hadn't found a match," Mike chuckles, "I'd be losing my mind, man."
Nick's mother, Shari, says she's been told a donor from outside the family, even one that's a genetic match, has an 85-95 percent chance of being accepted by Nick's system.
"I feel like this is going to be a new beginning for Nick," she says. "That he's going to come out better than ever."
The family was pleasantly surprised to hear that not just one match, but several, had been lined up so quickly. Some marrow donors have been known to back out at the last minute, so the LeGrandes were also thrilled to have multiple options.
"Really excited," Nick says. "Just thankful that they donated. And I wish that more people would."
The family has gone public with their son's fight not just as a personal platform, but to encourage donation to the national registry. Already knowing the shared anxieties and uncertainties, the LeGrandes want others to share in their same sense of euphoria and relief.
"I'll never forget," Mike says. "We'll be in this for the rest of our lives, for sure. It's so important. Because of Nick, I'm sure thousands of people have registered (to be donors); I'd like to think one of those will save somebody's life because of my son. We (may) never know who the somebody was who helped my Nick's predicament. But I do know that if you just keep throwing water on the situation, you will put it out, eventually.
"A buddy of mine said, 'Hey, man, you won the Powerball, the Mega Millions, everything, you got it all.' And in a sense, we did. But I don't want it to strike from my mind how it could've been -- because it is that way for other people."
Nick will have to undergo organ testing later this month before he can undertake the procedure, as well as intense chemotherapy, so he's not out of the woods yet. But at least he can see a clearing up ahead, almost close enough to touch. And, beyond that, a road to daylight.
For more information on the National Marrow Donor Program to become a donor yourself, visit www.bethematch.org.
You can follow Sean Keeler on Twitter @seankeeler or email him at firstname.lastname@example.org.
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