KANSAS CITY, Mo. — The plan is to play it by ear, to play it cool, but Shari LeGrande knows better. She knows at some point she’s just going to say to hell with it, reach out, grab Ryan Cook and hold on to him like there’s no tomorrow.
“I hope he won’t mind us giving him a big old family hug,” Shari says. “I hope he’s not germaphobic. Because he’s going to be a part of our big family hugs.”
She laughs. A giddy laugh. A mom’s laugh. Oakland reliever Ryan Cook is scheduled to visit their home in Lake Lotawana, Mo., on Friday, along with a couple of his Athletics teammates, a few hours before they’re to begin a weekend series with the Kansas City Royals.
Ryan Cook, who helped her baby make history. Ryan Cook, who helped her little man throw a pitch on a big-league mound from 1,800 miles away. Ryan Cook, who helped a boy whose world had been crumbling around him feel like the king of it again.
“I’m just excited to get to go put a face, a live face (to this),” Cook says, “and just hang out and just kind of talk baseball, talk life, talk whatever.”
Hugs? Hugs don’t do it justice.
“I want to be there,” Mike LeGrande says. “I want to meet this Ryan Cook. He seems like a pretty cool guy.”
You have no idea.
Before Nick LeGrande could win Cook’s heart, he had to break it first. In January, here’s a 14-year-old kid who’d been diagnosed with severe aplastic anemia, an extremely rare blood disorder that occurs in roughly four or five cases per million people per year.
In layman’s terms, Nick’s bone marrow had stopped making the things vital to everyday life: White blood cells, red blood cells and platelets. As a result, the teen’s immune system has been severely weakened — a simple cold might escalate to something worse — and his blood won’t clot properly, turning a paper-cut into a potential gusher.
It was out of the blue, an awful throw of life’s dice. There were no long-range warning signs, no real family history. There’s a medical term for that: Idiopathic.
“Which means it happens (and) you don’t know why,” Dr. Jaszianne Tolbert, Nick’s hematologist at Children’s Mercy Hospital, explains. “In the majority of cases, you don’t know why.”
They still don’t. All they know is that a firecracker of a kid was down to a flicker by last November. At Christmas, bouts of fatigue had become longer and more frequent. In January, a few little red dots began appearing on his arms. Then more.
Energy comes and goes. Mostly, it goes.
“It’s hard to stay energetic, yeah,” Nick says. “I just get tired real quick.”
School was out. Large crowds were out.
“We had to take him out of school and he had a home-bound teacher,” Nick’s father Mike says. “And that really, really got me, when I’d get up and be leaving for work and walk by his bedroom and it’s 9 a.m. and he’s still lying there and all the other kids are in school. That cut me like a knife, made me feel like life was passing him by. We’d drive by his school two or three times and he’d say, ‘I miss school.’ I’d never heard that before.”
But that wasn’t the worst of it. The worst was that baseball, the wind beneath his tiny wings, was out, too.
Nick had played since he was 5 years old, and been a part of traveling teams — where he’d rotated among first base, third base and pitcher — since he was 8. His mom would tease him that he had a “bubble butt,” a “baseball butt.” But Nick took the game seriously, even making a point to polish up the rough edges at the Mac-N-Seitz Baseball Academy run by former Royals Mike Macfarlane and Kevin Seitzer.
When the doctors told him about his fatigue, about the risks, about the limited contact with friends, about months of intensive treatments, Nick kept a brave face.
But when Dr. Tolbert put the kibosh on baseball, the little boy came out again.
And so did the tears.
“He just was crushed,” Sheri LeGrande says. “To him, that was all he knew.”
“That’s the only time I’ve seen him cry,” Tolbert says. “He still asks, every now and then. But he’s kind of come to terms with the diagnosis now.”
The family is coping as best they can, trapped on a hamster’s wheel of injections and prayers. Nick is receiving platelet transfusions every week and taking immune-suppressive medications designed to keep his T-cells from attacking his bone marrow.
Mike says Nick’s marrow is only functioning at about 15 percent right now, but they’re hoping medications show a boost in that percentage — any boost — when the marrow is reassessed later this month. In cases where the functioning improves with immune-suppressive treatment, the cure rate is at about 70 percent.
But if there’s no progress via medication, then a marrow transplant is in order, and neither of Nick’s two older brothers are a match. Which means the LeGrandes are going to have to search for a donor from the national registry — another throw of the dice. Of the 12,000 folks a year trying to find a marrow match through donations from strangers, only half usually wind up working out.
“The horrible thing about this whole thing is there’s so much waiting and watching and you can’t control any part of it,” Mike says. “You’re just a spectator. I’ve been in construction all my life. I can fix a building, fix just about anything. It’s just so against my nature to just stand in the shadows and hope that something happens that turns this thing around.”
The virtual ball actually got rolling several months earlier. Google, which had recently set up shop in Kansas City as a Google Fiber test market, was looking for a way to promote the speed of its new broadband network. The company reached out to Children’s Mercy to find them a baseball-loving patient; the folks at Children’s Mercy, in turn, reached out to the LeGrandes.
“I told (our public-relations staff) the story,” Tolbert says, “and they pretty much fell in love with him.”
Out in Oakland, Cook was hooked, too. Nick’s tale got back to the A’s right-hander via the sister of his girlfriend, who works for a company with Google ties. It tugged every heartstring, especially as one of Cook’s close friends had recently lost his father to a form of cancer.
“And through this process, I learned a little bit of how tough it was to get a blood match,” Cook says. “And they actually did get a blood match for him, but his body didn’t get strong enough through chemotherapy to then go through with the transfusion.
“But it was more just the fact that it completely wrecks my world to know that this kid with incredible baseball talent could be stripped from playing the game that he loves, and the game that has done so much for me in my personal life. I figured, what better way to try to give back than to help bring the game back to him?”
So Cook ran it up the flagpole, and the club hopped on board with both feet.
“Within a day, or two days,” the pitcher recalls, “it was not so much about ‘Can we do this,’ as opposed to ‘When can we do this?'”
Phone calls were made, arrangements were finalized, and secrets were kept under lock and key.
On June 12, with Shari trying to convince him that he was on the way to his grandmother’s birthday party, Nick LeGrande turned up at the Google Fiber headquarters in Kansas City and became the first person to throw out a virtual first pitch at a Major League Baseball game.
Atop a dirt mound inside a miniature stadium in the Midwest, the teen donned a white A’s jersey and cut loose. As friends and family watched here, a Google robot in Oakland attempted to mimic Nick’s movements.
The robot had a camera attached, so Nick could get a live-stream view of O.co Coliseum back in Kansas City. Cook caught the robot’s pitch, then got on the public address system to welcome Nick to The Show.
“It was just one of those things that really reached out and it touched you,” Cook says. “To be honest with you, it just hit me deep. And I thought, ‘I need to be — we need to be — a part of this.'”
He still is. The virtual pitch became a national sensation, all right. But the story didn’t end there.
“Nick is Ryan’s No. 1 fan,” Shari says. “He is brought up in our conversation daily. Before (the pitch), Ryan Cook was never mentioned, so yeah, that’s a big deal.”
So is this: As Shari pulled out of the Google Fiber parking lot that night, she heard a chortle of delight coming from the back seat.
She looked into the rear-view mirror and noticed Nick staring at his smartphone, grinning from ear to ear.
“Mom,” Nick said, “Ryan Cook just followed me on Twitter.”
@ryancook_48 thank u so much can’t wait to have u come over with your friends
“He was just so excited about that,” Sheri says. “He just thought that was so cool.”
And it’s about to get cooler. Cook got his teammates to autograph the baseball that Nick had virtually thrown. He promised to deliver it personally during the Athletics’ only scheduled trip to Kansas City.
“We just can’t wait to give him that big family hug,” Shari says. And there’s that laugh again.
“He’s going to get one, whether he likes it or not.”
There’s a medical term for that, too. Love.
You can follow Sean Keeler on Twitter @seankeeler or email him at firstname.lastname@example.org