Already virtually bonded, A's visit LeGrande

KANSAS CITY -- It's Friday morning at the LeGrande home, where a family of five is nestled atop a steep driveway tucked away in Lake Lotawana, a 30-minute venture east of Kansas City.

It's already a good day, simply because it's Friday. Not Tuesday, when 14-year-old Nick makes his weekly trip to the hospital for a blood transfusion. Sometimes it's a two-hour drip. Sometimes an eight-hour one. Parents Mike and Shari are by his side every second, no matter.

Then there's Monday. Mondays are sometimes harder than Tuesdays, at least for Shari. Like clockwork, that's when the worry sets in.

"Monday's the anxiety," she said. "You hope the numbers have gone up. Then Tuesday you do the whole hospital thing. Tuesdays come around real quick."

This routine is the new normal for the LeGrandes. It has been for the past six months, since Nick -- the baby of the family, their high-energy teen who lives and breathes baseball -- was diagnosed with severe aplastic anemia, a rare life-threatening blood disorder that affects six out of every one million people.

He's on immunosuppressive medications, but he still can't spend much time in crowds. His energy level has dwindled since November. Especially by the time Tuesday comes around.

And, like Shari said, "It's always Tuesday again."

But this is Friday, and they're celebrating with new friends Nick has eagerly been awaiting all morning. He greets Ryan Cook with a smile and a handshake. Jerry Blevins and Sean Doolittle, too. These A's relievers are here to brighten the day of a sick kid.

But it's also about so much more than that.

"Originally I just wanted to come hang out with Nick," Cook said. "I didn't want it to be a big production, with so many people and so many cameras. But then when you really sit down and realize this is an opportunity to help so many different people, not just Nick -- well, that makes a whole lot more sense. This is our chance to put the word out there."

Blevins admits to Mike that he didn't know much about blood diseases or bone marrow donations before meeting Nick, who initially came into the A's lives last month, when he made the first telerobotic first pitch in Major League Baseball history, with help from Google Fiber.

Google helped construct an indoor miniature baseball field at its facilities in Kansas City, complete with a set of bleachers and dirt straight from Kauffman Stadium. Nick's throw, coming from nearly 2,000 miles away, crossed a sensor that was linked to a robot, something of a modified pitching machine, stationed in front of the mound at the Oakland Coliseum. Cook was there to catch it, a moment that bonded them, that offered Nick a different kind of medicine -- a diversion of sorts from his life as a patient.

For people like Nick with such blood diseases, treatment options are limited. Should the drugs not work, doctors will soon begin their search for a bone marrow transplant from a stranger, since none of Nick's immediate family members -- including older brothers Alex and Skyler -- are suitable matches. For his body to accept these healthy cells, he needs a donor who is an absolute perfect match.

That's the only way he'll be completely cured.

"It's been one hurdle after another," Mike said. "We're hoping to clear one soon. It's so hard to keep your mind in a positive place, but we have to.

"I'm a person that believes everything happens for a reason. From the get-go, I kept thinking, 'How did we get here? What is the purpose of this?' It brought the awareness that there are a lot of other people in the same situation. This may be starting a fire that can't be put out, and it'll make a difference. Hopefully my son will get what he needs to save him, but if this whole story saves some other children, we all did something great. I just don't want it to stop. That's what means the most to me. It needs to get big."

Mike thinks of his son as a nuclear reactor, since "you can't do enough to keep him busy," he said. But around Thanksgiving time last year, "he just didn't have that punch he normally has."

"All of a sudden," Mike said, "he started becoming like a normal child, and so I just thought he was maturing, but he was getting ill."

"You don't think much of it, so I kept him in school," Sheri said. "But then the school nurse would call home."

Nick hasn't been to school since January. Instead, he has a teacher come to the house, and he can no longer play baseball, a sport that has taken him around the country for tournaments. He doesn't like telling friends he's sick. Just by talking to him, it's hard to tell he is sick.

"Not for one second of me being there would I have known he's sick," Cook said. "The way he smiled, the way he talked, to the plans he's made, you'd never know."

The two go at it in Nick's room, a space filled with baseball pennants and posters, for nearly an hour, engaging in an NHL video game that Nick wins, 4-3, in a shootout.

"And I tried," Cook said later in the day.

All the while, Mike and Shari are in the living room, telling countless stories of their courageous son, pausing every once in awhile when they hear his voice, his laugh, his banter with Cook. Sometimes they cry, but always while smiling. How can they not when thinking of Nick?

"The positivity that I felt there," Cook said, "from Nick to his brothers, it really made me feel like he's going to make it, that he's going to be fine. It gave me this whole uplifting feeling about it instead of feeling bad for him. It's like, how can he not make it when he has this incredible supporting cast around him?"

Cook can count himself as part of that group now. He even got a family hug, insisted upon by Mike, and by day's end was texting back and forth with Nick. They're talking about the family coming out to California, about Nick hanging out at the Coliseum, and -- without any Google magic -- him taking batting practice on the field.

For now, he'll simply look the part. Already equipped with an A's cap and jersey, Nick is now owner of an engraved necklace Cook brought him, inscribed on it the memory of his first pitch, that's joined by an A's pennant.

Nick repeatedly thanks Cook. So do Mike and Shari. But Cook said it's not necessary.

"When you hear people talking about going to get tested and how it can help thousands and thousands of people who are in need, families that are affected, you're obviously touched and moved," he said. "But then, when you actually put a face and a personality to it, and you really see these people who are going through these things and are still this positive about everything, it makes you really realize you can help. I hope we can generate some interest in the public in getting tested. I know I'm already looking into it."

Be the Match is a national marrow donation registry that connects patients with potential donors, who can learn more about the process or simply help financially at bethematch.org. Nearly 12,000 people a year are in need of unrelated donations, but only about half get them.

The LeGrandes are aware of this, but they are not shaken. Really, through it all, they've been strengthened. They gather for a picture with Cook, Blevins and Doolittle before the pitchers head off to work at Kauffman, one of many photos that will soon be added to a scrapbook Mike is making.

"To look back with Nick at all the fond memories down the road," he said.