Come back, kid

Colleen Smith is battling back from a dangerous illness to live out her dream.

The words swirl through Colleen Smith’s head, along with all the pain each step brings.

Just keep running.

She hasn’t had this chance since that day in late September 2011, when she started coughing up blood and the doctors finally put the pieces together. The anguish she feels now is unmoving, because at one point, when the chemotherapy wracked her and her body seemed unable to take any more, it did. She pushes forward because she remembers a day not too long ago when she could barely get out of bed, hardly even put one foot in front of the other to make it from class to class.

This early April day in Bloomington brings a semblance of that joy and excitement she once experienced so regularly with a volleyball in her hands, before one day a disease as rare as it is agonizing stripped the game away from her and left her on the brink of losing more than just her volleyball career.

The light jog is far more difficult than expected, a symptom of not being able to use these muscles much for the past 10 months. But she keeps going. A few more minutes, a few more steps. She welcomes the now-unfamiliar pain brought on by the shortness of her breath and the soreness of her legs.

She plods back to her dorm and greets a few of her teammates just inside the door. It’s been no longer than 10 minutes and at best a half-mile, no further than any of them could run without breaking a sweat, but their enthusiasm is genuine. They hug her, and she smiles brighter than she has in what feels like so, so long. Such a rush of relief.

It’s such a small moment, but this brief jog that felt like a marathon, for Colleen, is special. It’s a step toward normal.

******************************************

Colleen Smith

It’s not exactly clear when Colleen’s troubles began.

It could have been at birth, with an abnormal antibody that eventually would attack and destroy half of the blood cells in her body. Then again, it might have been that bout with mononucleosis, an infectious disease that research suggests could have triggered that antibody into lashing out against her. What’s clear is that something began to go wrong just as Colleen prepared for her freshman year at IU and first season as a setter for the varsity volleyball team — that’s when the physical symptoms started setting in.

Her knees, ankles and wrists became more and more inflamed, which she and doctors back in her home of Cary, Ill., attributed to her starting workouts sent by the Hoosiers’ training staff. The first diagnosis, tendonitis, led to some strong anti-inflammatory medication that had a side effect of reddening of the eyes.

That just so happens to be another telltale symptom of the news that was to come for Colleen. For so long, almost too long, the signs went unnoticed.

Even the light workouts during practice once Colleen arrived in Bloomington were too much. Soon, walking to classes, getting out of bed and the smallest of tasks became incredibly strenuous.

As strange as it sounds, throwing up blood — lots of it — was what wound up saving Colleen’s life.

Colleen, considered the No. 1 setter in the nation as a high school player, was being betrayed — her body was slowly destroying itself. On Sept. 16, 2011, while her team was away at a tournament in San Diego, the training staff and doctors for IU hunkered down to determine what was happening to the young athlete.

Less than a week later, they had an answer.

Colleen (far left) has always enjoyed the closeness of her family, whether it be during a trip to a Chicago Bulls game or through her illness.

Colleen has an autoimmune disease known as granulomatosis with polyangiitis, or more commonly as Wegener’s granulomatosis. It is so rare and under-researched that the prevalence of Wegener’s is uncertain. An estimate by the Journal of the American Medical Association in 2007 puts potential cases at 10 in 10 million.

The disease typically attacks the victim’s kidneys, lungs, eyes, ears, nose and throat. It can affect different patients in any of those places, but it hit Colleen in each one. By the time treatment began, her lungs had started to collect fluid, and the freshman needed two blood transfusions to retain the necessary levels.

Dr. Richard Hellman is a senior clinical nephorologist, or kidney care specialist, who works at the Indiana University School of Medicine. He focuses particularly in antineutrophil cytoplasmic antibodies, the abnormal antibodies that triggered the onset of Wegener’s in Colleen’s body.

“We don’t really know what sets the thing off,” Hellman said. “Certain types of infections in certain individuals cause the body to react in a certain way. The genetics aren’t enough. You have to have something happen.”

Wegener’s is rare among middle-aged adults, and even moreso in young adults. It is almost unheard of among NCAA athletes. When the staff first heard of Colleen’s condition — after figuring out “how you even spell that,” one trainer said — they tried to track down case studies, recorded examples, anything they could find that documented this happening to another student-athlete. They found three.

That trainer, Adam Clemens, faced the task of explaining a disease with no sure causation and a 90 percent mortality rate if left untreated. He and the rest of the department’s medical personnel also had to tell this young girl, who had just turned 19 a little more than a week before she might never play volleyball again.

At minimum, Colleen would have to take a medical hardship scholarship, which would make her a non-counter for IU’s scholarship numbers, still cover her financial obligations for the university but also make her ineligible to train with the team for at least two seasons. Even if she was perfectly healthy after those couple of years, and the Wegener’s was in full remission, there was no guarantee Colleen could be put back on active scholarship. That decision would be left to the NCAA.

As terrifying as the thought of losing the sport was to the Colleen, she found out just in time.

IU volleyball coach Sherri Dunbar (center) has playbooks for just about every situation in her sport, but there isn't a playbook for dealing with a situation like Smith's.

“If it would have gone untreated for another month or two, we would have been — we would be talking about something different right now,” Clemens said. “There would have been significant kidney problems. System shutdown.”

She still couldn’t understand at first. She laughed, asked the doctor to repeat the name of this crazy disease she’d never heard of three times, sat bewildered by the medical jargon and everything else she heard. Only one thing sunk in.

“What do you mean I can’t play?”

Her family, a five-hour drive away, scrambled to reach Colleen. Her older twin sisters, Breanna and Danielle, were the first to arrive. Her mother, Krista and her dad, Robert— who prefers to be called Bubba — arrived with younger sister Kylie afterward. They weren’t the only ones. Teammates, friends, the coaches and trainers — so many tears.

Colleen has a bubbly personality, one that fills her sentences with smiles and “likes.” Those close to her know her for laughing at the smallest jokes, and that happy-go-lucky attitude that brightens any room.

That smile evaporated in those lonely moments as she lay in a hospital bed, surrounded by tubes and machines, but she still managed to throw up a front as soon as someone walked through the door.

“Everybody was just an emotional wreck,” Bubba said. “Thank God she’s such a strong young girl. She gave us more support than we tried to give her. It was just amazing.”

On the outside, she was somehow the most calm, the most composed of those around her. The inside was a storm of denial, anger, doubt and sadness, tearing at her as harshly as the disease she’d inherited from God knows what.

Smith's IU career was derailed, but it's slowly getting back on track.

Like any athlete who makes it to the college level, there were so many hours put into this sport, so much effort. Unlike most athletes, she had a good shot to be one of the best in the sport by the time her career was over. She was the MVP of a National Championship club volleyball team. She was the captain of a Cary-Grove High School squad that went 41-1 in her senior season, its lone loss coming in the Illinois state finals.

Then, volleyball was gone, with none of the recognition and none of the goals accomplished. She’d only played four matches, and the last day she practiced was her birthday, Sept. 13 — the day the team left her behind to head to California. All of a sudden, that was it.

Unacceptable.

******************************************

Colleen’s half-mile run from her teammate’s house to Memorial Stadium is nothing now. The stadium stairs, though — those are as terrible as she remembers.

The 90-degree heat in late June doesn’t help. It came just in time for her one week in Bloomington, a trip that’s been a long time coming. After not being able to spend much time with her family for months on end because of treatments and classes, getting to be home and taking a family vacation to Cape Cod after Colleen’s second semester was more than welcome. She hadn’t had a chance to leave Bloomington since Easter weekend, and she was really missing her dogs: Duke, the golden retriever and “just the best dog ever,” and Holly, a lab-Dalmatian mix. From the way they rushed up when she got through the door, it was clear they missed her, too.

Still, the excitement of coming back to Bloomington is undeniable. This place, despite all the bad memories, has become a second home.

Clank, clank, clank, clank…

Her 6-foot frame rushes up the grandstands, each step more grueling than the last and bringing a new round of sweat dripping from her long, brown hair. Even for a healthy athlete, workouts like this are difficult.

Clank, clank, clank, clank…

She hurries down, which is just as daunting. The control it takes to hit each step cleanly and keep from falling works her muscles, too. There are no breaks here.

Clank, clank, clank, clank…

Back and forth she goes, straight up the 72 rows of bleachers on the East side of the stadium and right back down to do it all over again, heart pounding, chest heaving. One time. Two times. Three. Four.

Clank.

Colleen reaches the bottom of the grandstand, legs shaking and energy spent. She takes out her phone and calls her mom, so happy to have made it this far.

So happy, she just keeps on running, right back to that house on 10th Street and Lincoln Avenue, 10 blocks away.

******************************************

Colleen hadn’t taken much medicine before — maybe Advil once or twice. Just days after her diagnosis, she was taking 12 pills a day. She admitted she didn’t know some of what was being given to her at the start.

There was the 80-milligram dose of Prednisone, a powerful steroid drug used to treat lupus and many of the symptoms Wegener’s carries. Cytoxan, a chemotherapy drug, is used in treatment of the disease as well. Rituxan, an injected form of chemotherapy that is given over the course of several hours — 10, in the case of Colleen’s first treatment, because the doctors made an error — was another in the long list. All of them are toxic if used over a long period or in very high doses and have the usual side effects of chemotherapy. Cytoxan began to be too toxic for her liver enzymes, and so the balancing act began: Getting Colleen into remission without poisoning her body through the treatment.

She had the supplements, too: an iron pill, magnesium, potassium, a multivitamin, calcium, “something for pneumonia.” Colleen wasn’t in control of her body, and as treatment began, she wasn’t in control of what was going in it either.

“This disease knocks you out,” she said. “I see my grandma with these pill cases, and now I’m carrying around this thing.”

It was a homemade case teammate Jordan Haverly put together, just one reminder of the outpouring of support she received from those around her. Still, it was hard for Colleen to escape feeling like she was on an island in Bloomington.

People just couldn’t understand. How could they? The words “Wegener’s granulomatosis” don’t have the same effect as “cancer” or other commonly known diseases. The first reaction was curiosity. And Colleen had to answer those same loaded, painful questions time and time again.

It was clear she wasn’t fine. She was pale from the nausea, bloated from the medication, run ragged by everything that had happened in the weeks after her diagnosis. People would still ask that stupid question, though: “Oh, how are you feeling?” What, really, did they expect her to say?

“I’d always just say I was fine,” Colleen said. “It was so hard to explain without starting to cry.”

So she harbored that frustration, coupled with the agony of not being able to play the sport she’d played her whole life and the obvious strain put on her by repeated treatments, school and everything else. But what happened to her next was decidedly different.

Dr. Chris Carr, a Sport and Performance Psychologist for St. Vincent Sports Performance, described it as “resilient reintegration.” Carr has partnered with IU for its sports psychology services offered to its athletes since 2005 and worked extensively with Colleen following the Wegener’s diagnosis. With his help, and the support system around her, Colleen kept the positive attitude and the smile those close to her were so accustomed to.

Although there might have been a war going on inside her body, Colleen worked to make peace in her mind and find a way to turn this setback into an opportunity. “Resilient reintegration,” Carr said, is about more than coming back. It’s about coming back better.

“That oftentimes happens where an athlete has had a significant injury, where they’ve lost a great amount of time,” Carr said. “They’ve looked at building their confidence, they’ve worked at defining new talents and abilities. Sometimes, coming back, they find they have to build their weaknesses up, so that becomes a strength.”

A number of factors go into Carr’s treatment of patients like Colleen: Dealing with the mental and emotional pain associated with losing a part of the athlete’s identity, helping to establish a sense of purpose and smaller goals along the road to recovery and developing confidence that progress is being made.

Colleen never fell into that dark place some can’t climb out of. She took on the treatments, with all their side effects, and she planned out the small steps she would take to reach the day she pictured so vividly in her head.

******************************************

The weight lifting, the sprints, all the sweat and pain and vomit drift away for just a little while as Colleen closes her eyes.

She lies in the twin-sized bed in her dorm room, working on the journal Dr. Carr asked her to keep to evaluate her feelings each day. It’s a perfect time to visualize that glorious moment, the one she’s ached for since her diagnosis.

The national anthem echoes through the University Gym in Bloomington. The announcer makes the call:

“At setter, Colleen Smith!”

She runs along the line of teammates, a celebratory procession of high-fives and special handshakes. She takes the court, eyes on the sideline, waiting for the signal of where the coaches want her to place this first serve.

Her preparation is as it used to be: two bounces of the ball, a spin on the hand and a leap into the air. That jump float she perfected her freshman year of high school zips across the net.

Another moment. The ball rises toward her hands, and she fires off that oh-so-perfect set that can only result in a rocket of a hit. The roar of the crowd. The enthusiastic screams of teammates around her.

Another. She springs into the air, using the blocking technique her coaches taught that hasn’t gotten to put to use for the last few years. The ball smacks against her hand and plummets to the floor. It’s so exhilarating, the look of defeat in her opponent’s face.

It all floods in so rapidly: The joy, the empowerment, the feeling that she can’t be stopped because she says so, and that’s all that matters. Point after point, so powerful. Better than ever. Colleen, in short reverie, is everything she thought she would be when she became a Hoosier.

It’s beautiful. This moment might be years away, but when she shuts the world outside away like this, it feels so real. And best of all, in this silent moment, she can believe it.

“It’s finally coming true.”

******************************************

It has been an unwelcome journey for all those close to Colleen, but an experience from which they have all learned much.

As Dunbar said, they don’t train coaches to deal with this kind of thing. It isn’t in a manual or class or part of the NCAA rulebook. It’s life with all its complications, fears and unknown outcomes. This one was certainly the most unforgettable of those experiences.

There’s one thing the NCAA guidelines did teach the coach: Colleen could come back and regain some eligibility if the Association accepts an appeal to remove the medical hardship label on her scholarship. This would require Colleen to submit an application to the NCAA Committee on Student-Athlete Reinstatement, which has historically provided waivers for athletes who suffered from cancer or other debilitating diseases that can enter remission. The precedent bears no guarantees, but it is a bit of hope for Colleen, and it is the reason she continues to train.

“We would fight the NCAA and try to get a year back if it fit into what we’re trying to do here scholarship-wise,” Dunbar says. “She’s a part of our program, and a big part of our program.”

Clemens and the rest of the medical staff have learned plenty, too, most of it applicable to the rest of the players they’ll have to treat in the years to come. It showed them nothing is out of the question in diagnoses and that research should always be a priority for the staff.

He learned what it’s like to watch someone come back from the brink, too. He has seen a kind of inexplicable joy, one that is full of accomplishment, hope and hunger every time Colleen tells him about a recent workout: Her first half-mile run. Some light weight lifting. Getting to play some beach volleyball with old friends in her hometown.

“Her personality’s back,” Clemens says. “Now, she’s kind of the jokey, bubbly Colleen that we knew as a recruit and a freshman when she got here. You would have thought she just won a million dollars. Just grinning ear to ear just because she can work out.”

Colleen officially went into total remission in mid-April, and those two words produced a feeling Bubba could only describe as “euphoria.” The doctors told her she’d no longer need to be on any drugs, and Colleen is currently weaning herself off five milligrams of Prednisone, a far cry from her 80-milligram dosage when treatment began.

She has worked out with her sisters back home, all athletes in their own right, be it with weights or two-on-two basketball in the yard — the youngest, Kylie, is a hell of a shooter. Those runs are still a staple, every day, at least a mile. And finally, she’s gone from just setting a ball against the wall every chance she could get to playing live volleyball with her sisters. It’s a sand league, nothing too intimidating. But it’s so, so special for her.

There are no guarantees the disease won’t resurface. Research on reoccurrence of Wegener’s varies, but through his practical experience, Dr. Hellman said it is quite likely, even without a lifelong regimen of immunosuppressant drugs, that anyone who goes into full remission will stay that way.

“It’s one of these things that is uncertain because you don’t know your base populations,” he said. “The literature says 20 to 30 percent of people will relapse, but in my experience, it’s been rarer than that.”

That’s good news for Colleen, no matter how uncertain her future might be, because she isn’t ready to let go of volleyball. It’s unthinkable, no matter how sick she was or what happens from here, to give up on the goals she set when she enrolled: Becoming an All-American, being one of the best players in IU’s history, propelling the team into the national spotlight.

She might be forced to, be it by NCAA denial or because of health issues. This is no clear-cut Cinderella story. But for Colleen, and for those around her, the possibility of failure just seems impossible.

She’s been through so much, they said. She’s fought back so mightily. The fact that she deserves this more than anyone else on the court is evidence enough that it is meant to be.

“It’s like a miracle,” Colleen says. “It’s hard to explain. I’ve just, like, been through so much, and it’s all over.

“It was the best thing ever to hear.”

******************************************

This isn’t a dream any more. Colleen’s eyes are wide open.

She’s practicing with the 16-and-under AAU team she used to play with in her high school days, Sky High Volleyball, at their facility in Crystal Lake, Ill. It isn’t the first time she’s played since she reached remission, but it is certainly the most competitive. Despite being young, Sky High is still one of the best clubs in the nation from top to bottom, just like it was when she left its 17-and-under group as the No. 1 team in the U.S. a year ago.

The jitters are undeniable. Answers to so many big questions lie in this moment. Can she can still compete at a level suitable for college play? Is she able to keep up with the pace of the game?

Was all of this pain worth it?

The nerves start to seep away as play begins. Colleen does what she used to do: She sets, a player hits, the ball hits the floor, everyone cheers. A couple longer rallies show she’s still got that explosiveness meshed with incredible control when the ball leaps off her fingertips. It’s the exact skill that got her to Indiana in the first place, a skill that, in all likelihood, probably saved her life to begin with.

This is where Colleen feels most at home, most alive, and for the first time since this horrible journey began a year ago, she feels normal.

Normal. That word means so much to her now.

She isn’t certain, though. She’s been gone so long, and the sets look good enough, but she needs to ask. She needs to hear it from someone else.

She looks at one of the hitters, the one that just bounced another one of her balls straight down onto the opponent’s side of the court.

“Was that okay?”

“Yeah,” her hitter replies. “That was perfect.”

She smiles.

This story originally appeared in the July 2012 issue of Inside Indiana. To subscribe, call 800-524-9527 or visit Magazine.InsideIU.com