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Tyler’s wait continues
The piercing screech â€” eerie but comforting, scary yet exciting, surprising though prayerfully expected – was followed by an odd and hopeful few seconds of silence.
“Mom? Is it … ?” Tyler Nelson asked slowly, behind a half-smile and wrinkled brow.
“What was that?” his mother Cynthia, Nevels, asked of no one in particular.
The sound came from a pager. A pager Tyler has kept within earshot, arms length mostly, since it was given to him Nov. 15.
Since that day, he had been waiting to hear the beeps that would send him to Texas Children’s Hospital for a life-saving surgery and perhaps some normalcy.
Tyler has often stared at the pager, as if trying through force of will to make the tiny black box beep, checking on it every 10 minutes to ensure that he hasn’t missed a message . But nary a sound had come from the device before Wednesday evening.
A few minutes earlier, the ever-talkative Tyler, whose encyclopedic command of football statistics, knowledge of the game and pure love of America’s most popular sport enables him to break down X’s and O’s with his good friend Tony Richardson of the New York Jets, seemed at a loss when asked how he would react when that pager went off.
For the former quarterback Tyler, who on doctors’ orders had to “retire” a few years ago (at the tender age of 12), as he describes it, beeps from that pager could signify a critical event in his life.
The Dallas-area native came to Houston two months ago for lung and liver transplants. After a recent transjugular intrahepatic portosystemic shunt (TIPS) surgery to relieve pressure from internal bleeding, he moved up to No. 14 on the transplant list.
Last Friday, his family – older brother Jeremy, 17, and baby sister Alexandra round out the foursome – moved out of the Ronald McDonald House and into a townhouse across the street, hoping to have as close to a normal Christmas as they could, considering the circumstances.
Nevels had to sell almost everything in their Grand Prairie home to pay her son’s medical expenses, and now they don’t have much. But they have each other; they have hope.
When the pager went off, Jeremy was playing Uno with family friends visiting from Dallas; Alexandra was running around like 2-year-olds do; Tyler and his mother were wrapping up an interview.
Beep-beep! Beep-beep! Beep-beep!
Hey, it’s no big deal
Diagnosed with cystic fibrosis two days after he was born, Tyler D. Nelson, 16, is accustomed to trips to doctors’ offices and stays in hospitals.
Saddled with an assortment of 17 medications in his daily routine, pill after pill after pill, Tyler must undergo breathing treatments every few hours he is awake.
He has a cirrhotic liver and failing lungs, and in the past few months has dealt with internal bleeding that led to him coughing up blood and a chronic nosebleed. A few weeks ago, his mother said, his nose was dripping blood like a running faucet.
“That’s my life,” he says.
He looks small for his age, especially as he is almost swallowed up by his favorite dark blue Dallas Cowboys leather jacket, fan that he is.
But he has added weight – “all muscle,” he says – since the TIPS procedure, so he has 119 pounds on his 5-7 frame.
Through his physical struggles – he has had five surgeries – Tyler, who should be a junior at South Grand Prairie High School, but was too ill to attend school this fall, has stayed strong mentally.
Yet he has asked, “Why me?”
His answer indicates remarkable courage.
“God gave CF to me for a reason: He knew I could handle it,” Tyler said. “I’m big enough and strong enough and have the mental state of mind to take it.
“Maybe some kids wouldn’t be able to take it, they would be depressed or act out, or, and I hate to say it, but think about committing suicide or something, but I take it as it comes and deal with it.
“Maybe others will see how I handle it and it’ll make it easier on them.”
If attitude aids healing, Tyler is helping himself get better with an outlook on life that has endeared him to many – including Richardson, who met Tyler at a Make-A-Wish Foundation event at the 2009 Super Bowl in Tampa .
From the moment they shook hands, when Tyler recited Richardson’s career accomplishments, noting his selfless blocking for star running backs Priest Holmes and Adrian Peterson, Richardson said he was drawn to this personable young man.
“That energy, that smile, his laugh, man, I spent the first 20 minutes just talking to him and wasn’t even going around the room like we’re supposed to in that type situation,” Richardson said.
Soon thereafter, Richardson was in Dallas and he took Tyler and Jeremy , out to dinner. A friendship was born.
Point of reference
Three months after they met, Richardson again flew to Dallas, this time for Tyler’s 15th birthday, which was spent at Cook’s Children’s Medical Center in Fort Worth.
Plenty of pizza, chunks of birthday cake, no media, no attention. Just a couple of friends having a wonderful time.
“It shows that even if you’re famous, you’ve made it, you’re wealthy, that you can still care,” Tyler said. “He is a good friend .”
Richardson said he gets more out of the friendship than he gives, and only spoke publicly about the relationship in the past month or so, as Tyler’s need for a transplant put his life in danger.
“For the first year that I knew him, I didn’t even think about his illness, because it isn’t something he dwells on,” Richardson said. “He just has a great attitude about everything.”
If all goes well with the transplant surgery, Tyler could be in the hospital for just a week. He would then have to stay in Houston for at least three months to see if his body accepts the new organs.
Tyler’s situation is complicated by the need for two organs, which must come from a single donor and transplanted in a single surgery. The average wait for a transplant of one organ is 81 days, but for double organ transplant it is longer.
Tyler has a website (giftstotyler.org) that provides links to the Show Me Yours campaign, which encourages people to become organ donors and show off their organ donor card. Tyler believes that perhaps his larger purpose is to increase awareness of the need for people, especially youth, to sign up to be organ donors.
The site points out that every 13 minutes a name is added to the national transplant waiting list and every day 17 people die while waiting for a life-saving organ transplant.
“I tell him all the time that he’s going to be here, he has things to do,” Richardson said. “We’re going to host a show together one day, or I’ve told him that maybe he should think about playing quarterback for us when (Jets quarterback) Mark (Sanchez) is playing bad.”
Tyler said he’ll stay retired from football, but he will do something with all of that football knowledge. He likes coaching.
He doesn’t like to write – his favorite subjects are math and science and he wants to be a pilot – but he wrote a message on the home page of the site.
“Only the strong survive. I will not let this disease beat me. I am sixteen years old and I have CF. I need liver and lung transplants to live. Your gift could help my family and me win this race. Register to become an organ donor today. Your gift could save a life.”
On Wednesday, in the temporary home where hope abounds, the seconds of silence turned to mild confusion. Tyler handed the pager to his mom for close inspection as Alexandra tried to get her little hands on the electronic device.
There was no call-back number on the front of the pager. And the family’s home phone didn’t ring.
When the message that a donor has been found, that new lungs, a new liver and a new, healthy, pain-free life await Tyler at the hospital, a call-back number will appear on the pager. The home phone will ring.
This beep was a false alarm.
When it is for real, those hopeful few seconds of silence will give way to a hustle to the hospital that Cynthia Nevels expects to be similar to the moment she knew it was time for her to deliver a child.
The unplanned transplant drill, as it were, didn’t faze Tyler, who stood calmly, stretched and smiled.
“I’ll be excited and I’ll be ready to go,” he said. “Nervous? Scared? Naw, it’s just another surgery.”