A year ago this month, I had the honor of writing about Matt Allen.
Perhaps you remember his story. The Edmond resident started battling brain cancer three years ago, and yet despite numerous surgeries and treatments and triumphs and setbacks, he continued to live his life to the fullest. That included being a volunteer assistant for his daughter’s softball team at Bishop McGuinness High.
Matt’s motto: Play hard, and have fun.
I can honestly say that he is one of the most inspirational people who I’ve ever met.
His story resonated with many of you when it appeared in the newspaper and on the website last September, and it continues to have impact. We learned Tuesday that it has received an award from the American Cancer Society as the top Feature/Human Interest story at a big-market newspaper in this region. While I’m honored to get this notoriety, I’m even more excited to have reason to update everyone on Matt.
He is still playing hard and having fun.
His wife, Kelly, regularly shares steps of their journey on Matt’s CaringBridge page. In the past year, Matt has had some serious setbacks. More tumors. More treatments. More scary moments. But in Kelly’s most recent update, there was the best possible.
“Matt’s MRI showed that he is basically empty-headed,” she wrote. (As a side note, you might want to know that Matt and Kelly have been able to laugh and joke through this whole thing, and Kelly loves to talk about Matt’s empty-headedness after his surgeries.) “After the Gamma Knife procedure, there is almost nothing left of the five tumors that had been there before (just one very small one that may continue to shrink as time goes on). Also, we have decided that the chemo is also working since no new tumors have emerged. You’d better believe we all went out for ice cream Monday night.”
To Kelly, thank you for sharing your family’s journey.
To Matt, thank you for allowing me to share your story with our readers. But more than that, thank you for having a spirit that continues to inspire.
Want to read my original story on Team Allen? I’ve posted it below.
If not for the scar arching from Matt Allen’s right ear to the top of his head, you’d never know.
He fixes catcher’s masks for the girls on his daughter’s softball team and fills water bottles for the boys on his son’s football squad. He sells pharmaceuticals for the sick. He finds coaches for the teams and hires referees for the games in the Catholic youth basketball league. He serves the body of Christ for the church. He smiles and laughs and jokes and makes people feel good just being around him.
He just brings people together. There’s something about him — his quick smile? his kind eyes? his I-don’t-take-myself-too-seriously attitude? — that has created this huge network of friends.
He’s a glue guy.
But that scar …
It starts just below his temple where the surgeons sliced into his head three times in the past two years. It cuts a softball-stitch pattern up his scalp where staples held him together after brain surgery.
It is the only sign of trouble Matt Allen shows the world, the only hint of the aggressive, insidious brain cancer inside his head.
That’s why he sometimes goes to the parking lot to take his chemo pills before a softball game at Bishop McGuinness High School, where he is a volunteer assistant. Then there are the times he hides behind a tree at practice because he doesn’t want anyone to see him throwing up.
“You won’t hear me say the words, ‘I’m sick,’” Matt says. “I’m on an adventure.”
It started two years ago Sunday when doctors removed a fist-sized tumor from the right side of his brain. It has taken Matt through radiation, chemotherapy, experimental drugs and clinical trials. It has caused him to lose weight, gain weight, fatigue easily and sleep lots.
“But I will tell you that the day I start acting like I’m sick, I might actually be sick,” Matt says, “and I’m working really hard to show people I’m not sick.”
Matt does that a lot.
“I can go through life and be poor me and be sad; that would be very easy to do. What I have has never been cured, has never been stopped, and there’s only one end result.”
Matt’s wife, Kelly, says, “No matter what happens, Matt’s already beaten this thing. He beats it to death every day he gets up and hugs his kids.”
Some people get hope.
Matt gets options.
“I was never scared for myself,” he says. “I was always worried about Kelly and the kids.”
But remember, Matt is a glue guy. He’s why students at McGuinness made bracelets and sold T-shirts. Why duffers from as far away as Ohio and Minnesota packed Fairfax Golf Course last spring for the Matt Allen Invitational. Why a high school kid created a “Matt Allen is a Warrior” page on Facebook. Why hundreds of people have signed up to get email alerts every time Kelly updates a CaringBridge page on the Internet.
“We’re living this out loud,” Kelly says.
What a statement they are making.
Matt often asks, “How do you not know you have a tumor the size of your fist in your head?” Truth is, you just don’t. Prior to 2:45 am on September 24th, 2009, we didn’t.
The headache hit Matt on a Tuesday night.
It was September 2009, and he began working as a volunteer assistant for the McGuinness softball team earlier that season. He was at practice that day, hitting fly balls to the outfielders and playing good cop with anyone who got chewed out.
Everything seemed fine.
Better than fine, actually.
Helping with the softball team meant Matt was getting to spend time with his daughter, Taylor. Dads don’t always get to do that when their little girls become teenagers, and when Taylor got interested in drama and music, Matt wasn’t sure what to do. He doesn’t know much about those things.
Softball was different.
“This is what my dad and I do together,” Taylor says. “And it has been since I was 8 years old.”
So, it was weird when Matt said his headache was so bad that he wasn’t going make practice that next day.
He figured it had to do with a home improvement project, the demolition of some ceramic tile in the hall and kitchen. He went to the doctor who agreed that the dust had irritated Matt’s sinuses. Medicine was prescribed, and patience was suggested.
But the headache didn’t go away.
Wednesday night, it was back and worse than ever.
Early Thursday morning, Kelly drove Matt to the emergency room. Doctors sedated him before doing a CT scan.
“I wasn’t awake,” Matt says, “when they came and told my wife that I had a tumor about the size of my fist.”
About 24 hours later, Matt had surgery to remove the tumor. The procedure took five hours, but as Matt started waking up, he was greeted by some familiar sounds coming from just outside the intensive care unit.
He heard the voices of the softball girls.
The entire team was in the waiting room.
“All the girls. All their parents,” Matt says, wonder in his voice. “How do I not find a way to keep coming back?”
There was never a question — he was going to keep coaching.
Sunday, Nov. 8, 2009, 11:03 a.m.
From the early days of this journey, I told Matt that we were on a magic carpet ride. We learned pretty quickly that we had no control over what was happening in our lives. None. We couldn’t control the cancer, and we had very little say in what was going on around us. We could either fight our feelings of helplessness or roll with it. Hence the magic carpet ride. We decided that as long as we were along for the ride together, we could do anything. We didn’t know where the ride was going to take us, but Matt’s creed is “Play hard, and have fun,” so that’s what we decided to do.
The next few months were a blur of appointments with cancer specialists at MD Anderson in Houston, radiation treatments in Oklahoma City and chemo pills by the dozens.
Matt and Kelly tried to explain to their daughter, Taylor, and son, Chris, why he was so tired so often.
“It’s like getting a vaccination, this radiation thing,” they told the kids. “Maybe there’s pain for a few days. Maybe you even get a mild case of whatever you are trying to prevent.
“It isn’t the cancer making him sick. It’s the treatment.”
But as awful as Matt felt, he knew that life was continuing, so he’d muster the strength to do whatever he could. Carving pumpkins with the kids at Halloween. Watching Taylor in McGuinness’ production of “Alice in Wonderland”. Going skiing on spring break. Cheering Chris at the Boy Scout Court of Honor.
Then, there were those times when the family saw the bonds that Matt had created.
They showed up at Mass the Sunday night after his first brain surgery and watched as Chris and his sixth-grade baseball teammates went to the front and explained what had happened to their coach. They said they’d be standing at the exits with bags if anyone wanted to leave a donation. They also said they’d be going into the church gym to shave their heads just like Matt’s had been shaved in prep for surgery.
Before the shave-a-thon was over, dads and deacons had joined in, too.
“It was a frenzy,” Matt marvels.
“The next week when we go to church and look out and see all these bald-headed people was something.”
People who Matt didn’t even know had shaved their heads.
The glue guy had done it again.
It was good that the support system was growing; doctors realized that Matt’s tumor was growing again only eight months after his first surgery.
They sliced back into his head on May 26, 2010.
Thursday, August 12, 2010, 5:43 p.m.
Monday was about the lowest I’ve seen Matt. He made it downstairs but never made it off the couch unless he was in the process of being violently ill. Tuesday was somewhat better, and Matt was able to eat some more. The girls had a softball game that night, and so you know him — he went. He also went to the games Wednesday night, was a base coach for one of the games, had the time of his life and then came home and collapsed for the night.
Matt returned to the McGuinness dugout last fall, but Kelly had some coaching for the girls, too. They needed to make sure Matt was drinking enough water. They needed to tell him to sit down if he looked pale. They needed to look out for him.
These girls had cried at practice that day they found out about Matt’s cancer. Of course they would look out for him.
And before you know it, girls who’d never really talked to each other before were talking.
“It’s always a constant factor that we’re all thinking about,” Taylor says.
Imagine the girls’ excitement, then, when Matt’s tumor started shrinking last fall. It was 4 centimeters in September, 6 millimeters in October, and then in December, it wasn’t even measurable.
Matt’s chemo was working.
Only six months after doctors had been skeptical of his goal of seeing his kids graduate in 2012 — Taylor from high school, Chris from middle school — they told Matt that patients in his position lived between five to seven years.
It wasn’t a cure.
It was hope.
Wednesday, February 16, 2011
Matt has been feeling great lately during non-chemo weeks and tolerating his chemo pretty well. All of Matt’s lab results were good. In the MRI scan, they found a small spot that is “more conspicuous when compared to prior examinations.” While this could be new tumor, it could also be necrosis from prior treatments or scar tissue.
The reality is, we just don’t know.
Why does medicine that was working so well for so long suddenly stop?
Why is a good man with a good family that has already come through so much asked to endure even more?
In April, doctors discovered the spot had doubled.
In May, they operated on Matt’s brain again. The spot was a tumor.
The cancer was back.
Friday, June 3, 2011, 10:00 p.m.
As Matt put it today, he always played team sports for a reason — he always wanted to work hard, play hard, never let his team down and win as a team — but if there was ever a time that his game was off, he knew his teammates would be there to support him and maybe pick up some of the slack, knowing that next time he’d do the same for them.
Matt had stopped responding to his chemo drug, so when he and Kelly heard about a clinical trial designed to re-sensitize the tumor and reactivate the meds, they jumped on it.
“Now,” Matt says, a twinkle in his eye, “the title of this trial is, ‘How Much Can a Human Tolerate?’”
“Who was in the room that day when they were doing ‘Name the Trial’?”
The name does fit, though. A typical chemo cycle goes five days on the meds, 28 days off. Matt now does 21 days on, seven days off.
But, of course, it hasn’t kept him from coaching. There are times when he has to take his chemo right before a McGuinness softball game. He tries to hide the fatigue and the nausea that often comes from the meds.
“I don’t think he does as good a job of it as he thinks,” Taylor says. “There will definitely be days where he’s up and cheering. On days when he’s really sick, we know.”
One night earlier this season, Matt threw up during the JV game. He tried to find a place to hide but didn’t make it in time. Some of the players saw him and tattled to their moms. They tried to tell him that he needed to go home, but he wouldn’t have it.
So, one of the moms tattled to the head coach.
Kelly says head coach Bryan Wade used “man logic” on Matt.
“We need you at the Collinsville Tournament,” Coach Wade told him. “If you stay, you’re going to be too sick for that. I need you to go home.”
“Put me in, Coach,” Matt said. “C’mon, I’m ready to play. Today.”
Channeling his inner John Fogerty didn’t work.
“I got benched,” Matt says, smiling again.
Still, he keeps coming back, carrying the medical kit and hitting fly balls, fixing the catcher’s mask and making sure the team has enough of whatever it needs.
He keeps coaching in a way no one else can.
“I’ve seen him throw his chemo pill up right in front of me … and never lose the smile on his face,” Wade says. “Some people are like that because they’re scared and they’re hiding. That’s not him. He’s not afraid. He wants to live every day. He wants to rub off everything he can.”
McGuinness pitcher Nicole Frazier is grateful for that. When she transferred to the school a few years ago, she didn’t know many people. She remembers Matt being one of the first people to put an arm around her shoulder and make her feel like she belonged.
And when things aren’t going so well for her during a game, Matt always seems to know exactly what to say to her.
“He always makes me feel better,” Nicole says.
Her mother, Melba, feels the same.
“Seeing the time he’s given has made me a better person,” she says. “Nothing slows him down.”
Not everyone thinks this Energizer Bunny routine is always a good idea.
Kelly has come to peace with letting Matt make the decision about coaching, but it has been a struggle. Should he do it? Should he stop? This is her husband and father of her children, after all. He is struggling to keep up his weight. He is enduring more and stronger headaches. There have been lots of nights when she’s thought he should be at home instead of on the softball diamond.
“Resented may be too strong a word,” she says as she surveys the McGuinness softball field, a game in full swing, “but he’ll come out here tonight and if you’re watching him, you’ll think he’s fine. You really do. You think he’s fine. You think he’s great. But when he goes home tonight will be the end of it.”
Matt will collapse in his chair, fatigued and finished.
“There were times that I’d think, ‘That’s not fair. You give everything to everyone else, and you have nothing left for us,’” Kelly says.
“But … this gives him so much life.”
How can you take that away from a man who is battling death?
Wednesday, August 17, 2011, 7:31 a.m.
Matt hasn’t been able to do softball every day the last couple weeks … but the girls have been understanding. He tries to make the days that he is at practice and games count. I think he is a good role model for the girls about determination and drive and doing what it takes to reach your goals. There are days that Matt truly has to force himself to take those dreaded pills, but he has his eyes on the prize, and he is all about winning.
Matt hears the questions all the time.
Why are you at the softball park? Why are you at football practice? Why are you at the gym?
“Doing things like that make me feel good,” he says. “It’s completely selfish. If I make one of these kids smile and they benefit from something I’ve done … it makes me feel good.”
And doesn’t he deserve that?
Matt isn’t so sure. He insists he’s not doing anything out of the ordinary. He promises he’s not special.
Those who’ve been touched by the glue guy think otherwise. They leave messages on the CaringBridge page saying that Matt is rocking worlds, that his example is a gift to many, that God has chosen him as a light. They proudly call themselves members of “Team Allen.”
This is the most important team Matt has ever coached.
Nothing can replace coaching his kids, of course. Nothing can erase the memories that the family has made on fields and in gyms all over the state. Nothing can change the way he made the kids smile and laugh and learn lessons that they never even knew they were learning. Whatever happens next week or next month or next year will never change any of that.
But “Team Allen” is different. It is goes beyond season or sport.
It is forever.
Wednesday, September 21, 2011, 7:20 p.m.
Matt’s done a lot of living in the past two years, and he hasn’t let anything stop him yet. We’ll keep plugging away with this plan and see where the magic carpet ride takes us next.