Perfect Match: Inside Project 44 and how late Andrew Smith helped save a 2-year-old
How the late Andrew Smith inspired change and helped save a child
Before his end, Andrew Smith's final years on earth brought incredible tales of white-knuckle perseverance and phenomenal, odds-defying health recuperation.
The young man had already beaten cancer once. All 83 inches of him knocked it down and kicked it to hell. Months after came a collapse that left him unconscious and plunged him into a coma. But he came back, all the way back, and faster than logic suggested. Eighty-three inches reviving to life, to full-blown awareness. Back to physical capabilities, back to marriage. Back, miraculously, to a cycle of normalcy.
Those triumphs were supposed to be what defined Andrew Smith before the next 50, 60, 70 years of his life. Instead, they were prelude to cancer's boomerang ricochet from hell, infecting him once more and robbing Smith's loved ones of the man many called "Moose."
The inspirational story of Andrew Smith has become local lore in Indianapolis, where he grew up and was part of Butler's back-to-back runs to the NCAA Tournament title game in 2010 and 2011. He graduated from Butler in 2013, then got a contract offer with a Lithuanian basketball organization in a competitive European pro league. Smith's first battle with cancer -- followed months later by his inexplicable return to life after collapsing, falling unconscious and ceasing breath for 22 minutes -- was previously documented in an extensive feature on CBSSports.com.
"Unbelievably great teammate, a guy that was all about the team, never about himself," Emerson Kampen, a former teammate of Andrew's and current Butler assistant, said. "He was the happiest guy every single day just to be a part of the team. That showed throughout his life."
It won't be the cancer or the collapse or the coma comeback that will define Andrew's story. It will be life. Not his. Others'. Those who live on, and surely some who've not yet been born.
Nearly two years after Smith's death, CBS Sports returned to the community he touched to find a scene of action -- to see how his life, and death, have affected others. Project 44 is the positive agent of change born from tragedy. This story andinvolve myriad interviews with those on all sides of the organ-donor program. What was revealed was an astonishing story of finding hope in tragedy.
This mission began with what Andrew learned in May 2015. What he chose to do next, even as the cancer viciously returned, spread and transmuted, is the legacy: Andrew's doctor confirmed he would need a bone marrow transplant, a last resort to beat the disease. He tried to make sense of the injustice happening to his body, the injustice of a world plagued by cancer and the injustice of the fact that were this happening to his wife, Samantha, she would be staring down certain death.
Since Andrew was a white male of European descent, his chances at receiving a donor whose marrow was a match were relatively good. Samantha, whose family history going back generations is much more diverse, would almost certainly die waiting for a donor. And why? Because bone marrow registries in the United States not only lack donors, they specifically lack donors from ethnic, multi-cultural backgrounds. In Europe many people sign up for bone marrow registries when they turn 18. It is a cultural norm, like getting a driver's license, that has not come to exist in the United States. The idea that Samantha would have almost no chance angered Andrew.
"That's not OK," he told the doctor.
Andrew didn't have to wait long for a match. He received his transplant Nov. 6, 2015. Cruelly, the cancer was a step ahead. Andrew's initial diagnosis, in 2014, was T-cell lymphoblastic lymphoma. It was rare but beatable -- and he did just that. But in the final months of his life, Andrew's fight was against leukemia. That cancer was more aggressive, attacking his white blood cells -- the cells that were trying to give him life. Andrew's transplant never got the chance to cleanse his system because it was fighting a fast-acting, devastating host.
"Sam had called me the night before I think we were getting ready to play Detroit at home, and Sam had called me right before the game and said, 'Andrew's prognosis has become dire,'" former Butler coach Brad Stevens, now coach of the Boston Celtics, said. "'He's obviously in hospice care and will probably only be cognizant for the next however many hours.' And having lived that with my wife's mom when she was going through the later stages of her life with hospice care, it was really important to me, and [former teammate] Ron Nored came up from Northern Kentucky and joined us.
"It was really important for me to be there when he was still communicating, still cognizant of people that were there, so I knew that that time was really dwindling, and so we went down there and it was -- super glad we did it -- and a very, very difficult day. Because there were times during that day when he recognized what was going on. He understood that his time was dwindling and that's why we were there."
At 10:55 a.m. on Jan. 12, 2016, Andrew Smith lay in Samantha's arms and died in his sleep at the age of 25.
Seventy-one days and 343 miles away from Andrew's death, 2-year-old Deegan Scott was sitting on the kitchen countertop watching Mom prepare macaroni and cheese. It was a Wednesday: March 23, 2016. Deegan, the youngest of seven children, had seemingly fallen ill from the flu like most of the rest of his family in the previous week. But he wasn't recovering like his siblings. He would feel better, then have his energy sapped. That's not Deegan.
"If he's not dirty he's not having fun," Amy Scott, his mother, said.
As Deegan sat on the counter, Amy noticed his lips and tongue were shading to blue. His father, Cliff, was in the cold driveway, near the crooked-rimmed basketball hoop, installing new brakes on Amy's Chevy Cobalt. Once the car was ready, she rushed Deegan to their local emergency room in Salem, Ohio. His hemoglobin logged at a dangerously low level of four. Then, in the middle of Deegan's chest X-ray scan, a doctor came in and told Amy that her son needed to be transported immediately, via Life Flight, to Akron Children's Hospital.
"The way the doctor said it to me was almost like it gave me some hope," Amy said. "When the doctor says, 'I'm not saying it's leukemia,' I kind of held on to that. 'So it might not be, it might not be.' That's all I kept telling myself."
"He looked scared to death, and I felt helpless."Amy Scott
They bundled the boy up, strapped him to a gurney and loaded him into a medic helicopter. With multiple medical personnel needed in the cabin, Amy was told she couldn't fly along with him. She would have to drive.
"That's where the nightmare began," she said. "He looked scared to death, and I felt helpless."
With so many children back at their house, Amy and her husband shuttled kids to different grandparents' homes while their son was airborne over Ohio. Those new brakes on Amy's car got little use as they eventually sped northwest toward Akron. She remembers the 45-minute drive as the longest ride of her life.
Deegan underwent a litany of procedures and tests upon arriving in Akron. Amy soon found herself holding Deegan, sitting in a rocking chair in a little room in the Pediatric Intensive Care Unit. A bag of blood hung from an IV pole; a transfusion was underway to raise his hemoglobin levels.
"Wondering where we go from here," she said. "Seeing people walk in and out of the room and they didn't have faces. Staring at the clock and I didn't want to put him down for nothing. I remember sitting there having to pee so bad but I didn't want to let him go."
The diagnosis came shortly before 1 a.m. A doctor she hadn't seen before walked in and pulled his chair up very close. She knew then it wasn't good news. Deegan had acute myeloid leukemia (AML), a rare and aggressive blood cancer.
"I honestly don't remember when I slept next after that," Amy said.
Deegan was a rarity. The median age for those afflicted with AML is 72. The American Cancer Institute estimated 21,380 new cases of AML in 2017, with a tiny fraction of those occurring in children under 5. AML is considered fatal if not treated within the first 8-14 weeks after it develops, and treatment involves a long journey of repeated chemotherapy sessions. Doctors anticipated Deegan's 2-year-old body would need five rounds of chemo in the ensuing eight months. The Scotts were given no promises the treatment would work.
"As a mother you're supposed to be able to kiss their wounds and make them better, and when you're put in that situation when you know you can't," Amy said. "At that moment I think I tried to completely shut off my emotions and stay strong for him."
A few days later, doctors told Amy that a bone marrow transplant was necessary -- a last resort for extending Deegan's life.
Needing a transplant brought on an entirely new state of stress. Finding a match added to the anxiety. And no family members qualified.
A Mediport was implanted in Deegan's tiny chest and hooked up to tubing for medications and chemotherapy. The cancer was attacking his cells, and when good cells were being made they were taken over by hostile ones. Amy watched as nurses would suit up in what looked like garbage bags to inject Deegan with the poison needed in order to save his life.
Of the many concerns with AML, one of the most unpredictable facets of the disease is its propensity to attack the spinal column and the testicles, so Deegan also had to be sedated in order for chemo to be put into his spinal fluid. Amy had to hold Deegan down while his Mediport was "accessed" and "de-accessed," procedures that sterilized the stent-like apparatus and kept infections from arising. The solution used to clean the area around the Mediport and puncture into his chest burned his sensitive skin.
"I've never seen a kid -- and I have seven -- I've never seen a kid as strong as him," she said.
Because he was 2, Deegan couldn't clearly verbalize the pain. Family and doctors had to monitor his body language to gauge his discomfort. He wasn't able to consistently communicate what hurt or how it hurt. He would throw up without warning. It was hell for him, for his family. Cliff, his father, stayed in the hospital for the first month. Amy stayed by Deegan's side for another three months after that. She did not sleep at her house until Deegan was able to do the same.
"Trapped in a hospital room," she said. "Life-changing. You feel disconnected from your family and your life every day. You don't realize how much little things, that you would [previously] stress about, you wish you could be dealing with."
Amy had to switch insurance companies to cover the transplant. A friend set up a GoFundMe page to help. A social worker at Akron Children's Hospital got the family in touch with organizations that could provide more assistance, financial and otherwise.
Life became a trudge, a cycle of repetition. Deegan was stuck living the same day over and over. He wasn't allowed to leave the unit, meaning he couldn't leave that floor of the hospital. The bald boy would ride a tricycle in the hallway and pass by other families who had children fighting cancer. Nurses would come in at 7 p.m. asking Amy if she ate at all that day. Some days the answer was no. It would never occur to her.
"I looked at it as: We walk around these hallways. Almost every room has a child fighting," she said. "They need you too. I can wait."
Andrew's revelation with his doctor was the first stage in this story. Eight months later, pen to paper pushed the plot. Andrew's Celebration of Life ceremony was held Jan. 17, 2016. Stevens gave the eulogy. A worship band played, a wounded community prayed and everyone made sure to smile that day just as much as they mourned. In the lobby, tables were set up with Be The Match signup forms. That was Samantha's doing.
Be The Match, which started in 1987, has a registry of donors-in-waiting that's 19 million deep. It's an organization that links cancer patients with bone marrow donors, and has facilitated more than 80,000 transplants over the past 30 years. The wonder of modern medicine has given rise to the powerful realization that millions of people are walking the planet and, without even knowing it, are a potential cure to someone else's cancer. That is what bone marrow donation can do.
"You think you're prepared for it emotionally and mentally, but you never are," Brad Stevens
But instead of having 19 million people on the registry, what about 190 million? What if Be The Match's purpose was common knowledge, part of the greater good, part of the American way of life? That's what Andrew pushed for in his final months.
"A lot of times we get it wrong. We mourn the loss," Scott Flatt, Andrew's high school coach, said. "In this situation, Andrew was safe. We knew he was going to heaven. He didn't have to deal with a body that was wracked with cancer and live with pain."
At his Celebration of Life, dozens committed to the cause. It was the start of Project 44 before Project 44 had a name. The unfunded program, run almost entirely by volunteers, was born out of Andrew's death. The idea, cultivated by Butler alumni Krissi Edgington and Michael Kaltenmark, was an extension, an attachment to Andrew's enthusiastic, earnest push for Be The Match awareness and donor ambassadorship he embodied in the final year of his life.
Edgington had previously been the strategic communications adviser for Butler. Kaltenmark can be seen at every Butler game, as he's the caretaker of Trip, BU's beloved live bulldog mascot. When the duo brought the idea of Project 44 to Butler's marketing department, the school agreed to partner up without hesitation.
"We were also in close communication with Samantha Smith, working with her to determine program goals that were in line with Andrew's work and how he would have wanted it done," Edgington said. "Somehow, despite having lost her husband just weeks before, she was selflessly able and willing to participate in building a program that would save the lives of others."
Among those who registered for Project 44 at Andrew's memorial service: Chase Stigall.
A durable, level-headed shooting guard whose four years at Butler mirrored Andrew's, Chase started alongside Andrew in the 2011 national championship game when Butler amazingly made it there as a No. 8 seed. Together, they helped the Bulldogs average 28 wins across four seasons and redefined big-picture expectations for mid-major programs.
"If it wasn't for Andrew, I wouldn't have signed up," he said.
Smith wore No. 44 (no Butler basketball player has worn it since), and so the goal of the enterprise is to save 44 lives. But the odds of someone on the Be The Match registry getting that call is 430-to-1. Do the math: 430 times 44 lives saved equals 18,920 registrations needed in order to statistically get to 44.
Project 44 was officially put into action in affiliation with Butler University on March 17, 2016, literally seconds before the start of Butler's NCAA Tournament game against Texas Tech (the Bulldogs won). Coaches who've prominently patrolled Butler's sideline -- Stevens, Chris Holtmann and now LaVall Jordan -- are on the registry.
"You think you're prepared for it emotionally and mentally, but you never are," Stevens said. "There's that other part of you, that very, very small part, because everybody misses him so badly, that is thankful he doesn't wrestle with this kind of pain anymore."
After the memorial, Butler players and coaches joined Samantha at a dinner organized by Stevens. Unprompted, everyone there stood up one at a time at the dinner and shared their best Andrew stories. They did it for him, they did it for each other, but they mostly did it for Samantha.
"It was by far one of the most special things I've ever been part of," she said.
She had stood for two hours at the memorial service -- and still had more than a hundred people waiting in line to give condolences two hours after the service officially ended.
"What she's been through and how she navigated that, and the amount of support and love that she showed with the amount of strength she did simultaneously is incredible," Stevens said. "You hate to see anybody have to go through what she did, and again, the way that she did it and the strength that she showed was nothing short of miraculous to me."
It was time to cut the grass. Samantha had never used a lawnmower. But the winter had thawed to spring, it was April, the green was overgrown and she had to do it. She had moved back to the house she and Andrew bought in 2015, three months before his cancer returned. Andrew was the one supposed to be mowing the lawn now. It would take him an hour, tops; it took her three. She fell down attempting to do it because the property sits on a slanted corner lot. She eventually finished, went upstairs, and wept.
Then her phone rang. Chase. Less than three months after he scribbled his information on a sign-up sheet, he got the call. There was a young boy out there, somewhere, dying of cancer. Chase was told he might be the match.
Samantha sat in her closet and cried.
"I'm blown away by the odds of it," she said. "I felt a security of Andrew's legacy in that moment."
Of all the people to get the first call, it was not only someone they knew, but a four-year teammate. Someone who was in the trenches, someone who helped turn Butler basketball into a national program -- and has now made the legacy of Andrew Smith a national sports story.
"That's Andrew tapping her on the shoulder saying, 'I'm still here,'" Chase said.
Soon thereafter, Chase donated 10 vials of his blood for further testing. The process took maybe 10 minutes. A few months later, on Aug. 9, 2016, he underwent a 20-minute procedure that involved taking a liter of bone marrow out of the back of his pelvis through two tiny punctures.
"Chase has always been a giving person," Stevens said.
Afterward the procedure hardly hurt; it felt like Chase took a rough charge in a game and landed on his tailbone.
Chase's wife, Rachael, was 36 weeks pregnant at the time.
"I always tell people, 'My wife waddled to the hospital, and so did I,'" he said.
It's something they laughed about then and still do now. Andrew, from beyond, put them in that situation. He put them in their situation from the start too. It was Andrew who introduced Chase and Rachael to each other during college. In a small way, or maybe not so small, they owe their marriage -- their life -- to him.
"A lot of things that happened, and the way I live my life now, is because of him," Chase said.
The day after Chase's donation at the Cleveland Clinic, a 2-year-old boy who had lost all his hair from chemotherapy, and who 140 days before was strapped down on a medical helicopter zipping over Ohio, sat on the floor at Akron Children's Hospital, played with his favorite toys and received his transplant.
The trouble with transplants is, for all the hope they bring, they do not always take. Be The Match is extremely protective of the identities of donors and patients for numerous reasons. Andrew Smith never got to meet his donor; his transplant could not catch up to the leukemia preying on his cells. Patients must wait a year after a transplant before they can meet their newfound, earthbound maker. This helps protect the donor and the patient from any undue pressure.
Although Andrew's body rejected the transplant, it did buy him and Samantha more time. It allowed them to have one more Christmas together. It gave them time to have conversations, even the worst kinds of conversations. And after Andrew died, the phone call Samantha got from Chase kicked in emotions of hesitation and fear for a child whose identity she did not yet know.
"I prayed for that little boy more than I can say," she said. "I've thought about Deegan more than that little boy knows."
The Scotts were warned that the medicine alone could be fatal to Deegan's body before the transplant was done. That medicine, though, was necessary to wipe out all the tainted cells in his body.
Deegan is a wild child, a tornado in size 5 clothing. He is also a medical wonder. Not only did the boy respond well to chemotherapy, his body's reaction to the transplant was advanced to the point that it was wowing the doctors and nurses who deal with children's cancer on a daily basis.
"When it happened as fast as it did, it was amazing not just to us but to the hospital staff too," Amy said.
In recovery he was taking as many as 11 medications at once. Astonishingly, approximately a year after the transplant Deegan was off all of them, even after two tough battles with Graft-Versus-Host Disease. Symbolic milestones over the past year have included Deegan getting to throw his medicine bottles in the trash one by one, every few weeks. We're done. You don't have to take that anymore. Today, Deegan's only inconvenience is being lubed up every day with Aquaphor. He hates it, but it's needed to keep a close eye on his tender skin.
"They wish they could bottle Deegan up to study him, study his counts, understand what it is about his body that allowed it to respond so well," Amy said.
By November 2016, when he turned 3, Deegan was home for good. But it would be another year until he and Chase knew of each other.
On Nov. 11, 2017, in Minneapolis, Be The Match arranged for Chase and Deegan to see each other for the first time. Their meeting was the centerpiece of Be The Match's annual council meeting.
"The man that saved my son's life. ... You see someone and what they did for your child and they're now a part of your child, and it's like an instant connection," Amy said. "You feel like you have love for someone that you never knew until that moment you're meeting them."
Chase told his story to a packed room that day. Amy, waiting backstage with Deegan, Cliff and some of her other children, learned not only of Chase but also of a man who wasn't there. His name is Andrew. She discovered then how deep this story goes.
"What I could say if I could talk to Andrew," Amy said with a pause. "Being faced with cancer himself, and then losing his battle, but he still is spreading the word. He's still -- Deegan is an example -- saving lives."
Samantha was also in Minneapolis that day to see the first life saved under Project 44.
"It was one of the most defining moments and I didn't want to let go of him, because I almost felt like I was just hugging a piece of Andrew," she said. "It is Chase's blood running through Deegan, but it is very much so the heart of Andrew. There's a little boy that is embodying everything we've been trying to accomplish and to show people that it's important and that literally lives are being saved through Project 44 and Be The Match."
Deegan has spoken about Chase's blood. He understands. He knows Chase's blood is his blood -- it's what saved him. The transplant process is called "rebirth" because a patient receives new cells to bring life to the body. So Deegan now has two birthdays. He turned 4 on Nov. 22, but he also turned 1 on Aug. 10.
In Minneapolis, he gave Chase a thank-you gift: a sign made from wood. It reads: You made one decision and it saved my life. Love, Deegan.
On Dec. 30, Butler had its annual Be The Match/Project 44 awareness day. No. 1, undefeated Villanova was in town. It was the biggest game on Butler's schedule this season. Sign-up sheets were placed in every seat of the student section. Posters and directions were up in the concourse of Hinkle Fieldhouse, directing people where they could sign up.
This way to save a life!
There's a woman in her young 20s standing next to the entrance where signups are happening.
"I can't," she says to the man standing next to her. "I'm too chickenshit."
if it wasn't for Andrew, we wouldn't be sitting here right now."Chase Stigall
And that's the biggest hurdle.
Misconception is a constant fight for Project 44 and Be The Match. Misconception about how much pain is involved to donate bone marrow, misconception that it will temporarily hinder a donor's health. There is general hesitation because many people are predispositioned to think that signing up for the registry means they'll wind up putting their body in pain's way. That's why the odds are 430-to-1. It's why the grassroots ethos of Project 44 must continue, because that number needs to be a lot lower.
"Through everything we've been through, he brought us to this point," Chase said. "He saved a life. It's always been that Andrew saved a life. It's never been that I saved a life or Sam saved a life. That's the way we've always spoke about it because if it wasn't for Andrew, we wouldn't be sitting here right now."
Against Villanova, the Bulldogs pulled off their best performance of the season and to a capacity crowd of 9,244 inside Hinkle. Fans rose to a standing ovation, and remained on their feet, as Samantha and Chase publicly shared the news of Deegan's story. It was an emotional scene. This was the first widespread public reveal of what Project 44 is capable of.. It was an exhilarating scene, but the ending could not match what happened early in the game when Samantha and Chase were introduced and spoke
"It's what Andrew was talking about on that last day that I saw him," Stevens said. "It was about, 'How do we use this platform to help others, going through similar things, live longer, live another day. That's to me the coolest part of the story. Being in that room and listening to him talk through all the tubes, through all the pain, with Sam next to him, [former Butler teammate] Ron Nored and I are just sitting there glassy-eyed and listening, and then to have Chase be a perfect match ... it's a pretty incredible story of paying it forward."
For Samantha, the weeks still vary. She is living her life, living it well, but does not pretend that all days are a success. Sometimes, courage can be just getting out of bed. Courage can also be what she did in December in front of 9,244 people. She speaks of it with earnestness, but also bluntness: "Raise awareness. Help one woman not become a widow. Or help kids not lose their parents or lose grandparents. That's what I'm here to do. These are people that are going to die otherwise."
The mark of a legacy, a true legacy, often becomes truth after a person has left. That's a bittersweet circumstance. Andrew Smith helped start something he could never see come to life when he had his own.
"The impact of his life, but more powerfully, the impact of his death," Flatt said. "His death has meant more and has meant life for so many more. ... We don't want to say that, we don't want to acknowledge that in terms of, man, I don't wish that he had died, but certainly I see how his life has been used and his impact has gone far beyond because of his death. What has happened with Be The Match and Deegan Scott is a testimony of that legacy that is living on."
Stevens calls all that's happened with Chase, Deegan and Project 44 "the footprints" Andrew left behind. Stevens remembers the way Andrew's eyes looked, the sound of his voice, the sound of his conviction from a hospital bed only a few days before he died.
"You could hear it in his emotions," he said. "He spent the whole afternoon talking about how he and Sam could help others and how they could use all that they've learned to help others, and how they could use all that they've learned to help others, and then there were those brief moments where he got emotional because he knew, unfortunately, he was going to pass soon. That was tough."
There are people walking the planet right now -- healthy people; it might be you or me -- who are yet to get cancer. People who will one day eventually be saved because of all Andrew and those close to him brought forth with a life-changing project. There's a 4-year-old running around Salem, Ohio, right now. He's playing with trucks, climbing on furniture and riding bikes with his big brother Broadie.
"To be here, to wake up in our own house, and the noise." Amy said. "The noise! I mean, some of you will probably think I'm crazy but I missed the noise from my kids. It's so nice to be in a noisy house."
Deegan is No. 1 on the way to 44 -- and hopefully many more. The goal is not just to get to 44 lives saved, but for Project 44 to outlive everyone associated with it now. Butler assistant Emerson Kampen is the one remaining link from Andrew's playing career who's still with the program. He's helped rally to get all the players and coaches to be signed up.
"We're all waiting for the call," he said.
Who's next is unknown, but someone will be next. Samantha is waiting for call No. 2. The process can repeat, then happen 42 more times -- at least. There is no happy ending because there is no ending, only continuance, an extension of life. That is the win. A non-ending: a noisy boy in Ohio.
If you're interested in registering with Be The Match and/or Project 44, visit BeTheMatch.org or text "ANDREW" to 38470 to learn more.
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