Breaking News

A pitch for bone marrow donors from 1,800 miles away

Updated: 2013-06-13T12:09:28Z

By ERIC ADLER

The Kansas City Star

Although sports are often filled with what are called do-or-die moments, no single touchdown, no hit, no throw and no slap of a puck that didn’t cause grievous injury has ever meant the difference between life and death in any true sense.

But Wednesday night, when Nick LeGrande stepped up to pitch a baseball from a specially created mound at the Google Fiber offices on Westport Road, the boy’s father hoped it would mean just that.

“Someone’s life could be saved,” said Michael LeGrande of Lake Lotawana.

Of course, he and his wife, Shari LeGrande, figured the pitch could also just turn out to be a grand, feel-good moment of joy for a soon-to-be ninth-grader who so lives and breathes baseball that he has traveled the country playing in tournaments.

But Nick, who turns 14 today, is very, very sick.

When the people at Google Fiber came to Children’s Mercy Hospital a while back to say they wanted to use their technology to tell stories and help others, the hospital quickly chose Nick, a Little League pitcher and baseball fan since age 4.

Google set up the mound. At close to 9 p.m., Nick wound up and threw in the offices at 1814 Westport Road. Through Google magic, his throw crossed a sensor that instantaneously linked to a robot set up on the field in front of some 35,000 fans gathered at O.co Coliseum in Oakland, Calif., for a game between the A’s and the New York Yankees. The robot, a modified pitching machine, then slung the ball toward the plate.

Nick, shown on the giant scoreboard screen along with a story about his illness, threw out what a commentator described as the first telerobotic pitch in Major League Baseball.

The crowd in Oakland and group of well-wishers at the mock-up ball diamond in the Google offices erupted in cheers.

“It felt good,” Nick said afterward as people rushed up to give him a hug. “I was just in the moment. I’ve been wanting to do that for a long time.”

A’s pitcher Ryan Cook caught Nick’s 60 mph “throw” from 1,800 miles away. Cook then came up to the camera linking Oakland and Kansas City to say he would have all the players sign the ball Wednesday and would deliver it to Nick when his team next comes to Kansas City.

“I don’t know what to expect out of all this,” Michael LeGrande had said earlier. “I would do anything for my boy. If nothing else, if this is something that makes him feel special, then that alone is great.”

But a father also has to hope.

Maybe, the 62-year-old construction company owner said, someone among the thousands of fans or in the Googlesphere would see Nick on the big screen, hear his story and be inspired to do something heroic. Namely, to register as a possible bone marrow donor. Just register.

Perhaps it won’t help Nick. There is a small chance it would. Even if not, maybe it would help save someone.

“If nothing else, if you register, if you could do an act of love like that,” LeGrande said, “you could be a Superman.”

Nick has a rare blood disorder called aplastic anemia, affecting about six out of every one million people. Often it is the result of a genetic mishap, but in many cases, as with Nick, the root cause is unknown.

The result, said Children’s Mercy hematologist and Nick’s physician, Jaszianne Tolbert, is that one’s bone marrow — the factory that produces red blood cells that carry oxygen, white blood cells that fight infection and the platelets vital to blood clotting — “just sort of shuts down.”

Without oxygen or the ability to fight infection, the body eventually shuts down, too. Current thinking holds that aplastic anemia may be an autoimmune disease, in which the body’s T cells, infection-fighting cells produced by the thymus glad, attack the bone marrow.

“The immune defenses you have actually turn against you. We don’t know why,” Tolbert said.

In Nick, it seemed to happen suddenly.

Looking back, LeGrande said, he can see that early signs began to show at Thanksgiving. Nick is an energetic kid, “like a little reactor,” he said. His son seemed to be moving slower than normal at the family’s annual Turkey Bowl football game.

At Christmas, he was sluggish. Then January arrived.

“He started complaining about little red dots on this arms,” LeGrande said. They figured maybe they were bug bites from the yard.

“One day,” LeGrande recalled, “he came to me and said, ‘Dad, I’m getting more of these red dots.’ They were clusters, like grapes. It was January so he was wearing long sleeves and long pants. When we saw his arms and legs, we saw so many bruises, it looked like I was beating him.”

They hurried him to his Blue Springs pediatrician.

“They pricked his finger and it shot out like a squirt gun,” LeGrande said. Blood wasn’t clotting as it should. The doctor told Shari LeGrande to get her son to Children’s Mercy.

The diagnosis came with some hope. Nick is the youngest of three boys. Skyler is 20; Alex is 16. If the bone marrow of one of his older brothers matched Nick’s, they could do a sibling bone marrow transplant. The cure rate of such a transplant is more than 90 percent. Nick would be fine.

“We tested Nick’s two brothers,” Tolbert said. “Neither was a match.”

But, she added, “we have other things in our pocket.”

Each week, Nick receives a blood or platelet transfusion that gives him energy for about two days before he tires.

He also is on immune-suppressive medications to keep his T cells from attacking his bone marrow and possibly to reignite the marrow to do its job. In cases where that shows signs of working in the first three to six months, the overall cure rate is about 70 percent.

Wednesday is Nick’s three-month milestone. At his request, Tolbert said, the plan is to test his bone marrow after July 4, so he can enjoy the holiday with his family.

Should the drugs not work, the next step is to look for a bone marrow transplant from a stranger. The cure rate is about 75 percent, but that requires finding a perfect match among the people on the registry.

Although 10.5 million people have registered, finding a perfect unrelated donor is very difficult. About 12,000 people a year are in need of unrelated donations. Only about half get them.

“Every donor on the registry brings hope to a patient,” said Mary Halet, director of the Be The Match program operated by the National Marrow Donor Program based in Minneapolis.

To talk to Nick, his dad and doctor both said, is to talk to an irrepressibly positive boy who has long dreamed of being a professional baseball player.

“An awesome kid,” Tolbert said. “An awesome kid. He never complains.”

Shari LeGrande, 42, said the only time she has seen her son cry through all of this was on the day that the doctors told Nick he couldn’t play baseball. Out on the field, he would take hits and bumps and screaming line drives to his legs without complaint. But the news of no more baseball struck hard.

“He just lost it,” his mom said.

Around friends, Nick is only positive. He hasn’t been in school since January. When he sees classmates, he rallies.

“He says, ‘Mom, I’m not going to tell them I’m sick,’” his mother said.

What’s curious and oddly coincidental to Michael LeGrande is that soon after his son was diagnosed, he wondered what he could do to make Nick feel better.

Possibilities, all centering on baseball, flashed through his mind even as he headed to the hospital. Maybe he could get in touch with the Royals, he thought, or perhaps George Brett might call Nick to lift his spirits.

“I wanted someone to make my son feel like he is not an insignificant child. He is special,” LeGrande said.

One image kept coming back. “I kept visualizing my son throwing a ball across a plate.”

Then, months later, Children’s Mercy said that the Google people had called.

On Monday, Shari LeGrande took her son for a haircut, although he had no idea why. The A’s and Yankees have sent him jerseys with his name and lucky No. 7 on it. Google hauled in dirt for the mound.

“It shouldn’t all be about my son,” his dad said. “Just the thought of saving someone’s life. I couldn’t imagine a better feeling.”

Still, he said of Nick, “All he’s ever wanted to do is play baseball.”

Wednesday night, he made the pitch of a lifetime.

The Star’s Matt Campbell contributed to this report. To reach Eric Adler, call 816-234-4431 or send email to eadler@kcstar.com.

Deal Saver Subscribe today!

Comments

The Kansas City Star is pleased to provide this opportunity to share information, experiences and observations about what's in the news. Some of the comments may be reprinted elsewhere on the site or in the newspaper. We encourage lively, open debate on the issues of the day, and ask that you refrain from profanity, hate speech, personal comments and remarks that are off point. Thank you for taking the time to offer your thoughts.

The Kansas City Star uses Facebook's commenting system. You need to log in with a Facebook account in order to comment. If you have questions about commenting with your Facebook account, click here