#StillStrong: Devon And Leah Still's Journey From Cancer Diagnosis To Now
Since his daughter's cancer diagnosis 13 months ago, Bengals defensive tackle Devon Still has documented through social media Leah's brave battle with the disease, winning fans with their courage, incredible bond and commitment to raising awareness for pediatric cancer.
On Wednesday, the dynamic pair will be honored with the Jimmy V Perseverance Award at the ESPY Awards in Los Angeles.
But before the Stills take the stage -- Devon in person, Leah by satellite -- we look back with Devon on the past year and everything they've been through.
THE DIAGNOSIS -- Leah was supposed to be performing in a dance recital In Delaware, where she primarily lives with her mother, Channing Smythe, but the 4-year-old never made it there -- she came down with a high fever and ended up in the emergency room instead.
After discovering severe pain in Leah's hip, the doctor performed an ultrasound and explained several possibilities, one of them being cancer. A series of other tests, spanning hours that felt like an eternity, revealed the worst.
"When I saw the doctor walking out and her lip was shaking, I kind of knew what she was about to say," Devon shares. "So, when she actually said it, I just felt empty. It felt like I was just hit a train."
After hearing the doctor explain the disease, the multitude of treatment options and the frightening 50-50 prognosis, Devon took it upon himself to share the news with the rest of the family. "When I walked out, I was composed, but once I went to open my mouth to tell her grandparents that they found cancer, I just broke down crying."
TELLING LEAH -- Leah was undergoing additional tests when her family learned of the diagnosis. Like he had done with the other family members, Devon took it upon himself to tell her: "I told her that she had cancer, and that was a disease that some grown-ups get and some kids get, and that she was going to have to fight as hard as she can to win the battle. I didn't go into depth, I didn't tell her what some of outcomes could be."
Leah didn't ask what would happen if she didn't win the battle, but she agreed to fight all the same.
Four days later, she started her first round of chemotherapy.
THE TEAM -- Football was the last thing on Devon's mind after he heard the news. And when he did finally think about it, he couldn't fathom the thought of leaving his daughter's side to play in another state. "When the doctor said she only had a 50 percent chance of winning, I realized I would be giving up time to spend with her if I went back to the team," he says.
But then reality hit: The treatment would cost upward of $1 million.
However, his insurance through the Bengals would cover 100 percent of it, so Devon was "left with no choice," and he returned to Cincinnati ahead of the 2014 season. He was ultimately placed on the team's practice squad -- a move designed to allow him to spend more time with Leah while continuing to be on the team's insurance plan.
While he was touched by the team's generosity and thoughtfulness, having never been cut from a team before, the announcement still stung. "I remember telling my defensive line coach after he told me that it would probably hurt a lot more if I didn't just get the worst news of my life a couple of weeks ago."
However, a few weeks into the season, Devon was moved to the active roster. And though he had appreciated the flexibility of the practice squad, he was thrilled. "If I had to be out there, away from Leah, to get the insurance, I wanted my life to be as normal as possible," he explains. "That's one thing they tell you about cancer -- you need to try and go about your daily life as you usually would so you can have some sense of normalcy. So when I was promoted back to the active roster, I was happy to be able to go back out on the field with my teammates and get a break from everything for those couple of hours during a game. But I never actually stopped thinking about Leah and what was going on."
JERSEY SALES -- Unbeknownst to Devon, the Bengals decided to donate all of the proceeds from his jersey sales to the Cincinnati Children's Hospital to support pediatric cancer research. He found out the news on Twitter.
"I was really caught off guard," Devon says. "I can't fully put into words what that meant to me, but I really feel like I was blessed to be a part of that organization. Not only did they step up to help me, but they helped the cause that I was fighting, and helped raise money and awareness for pediatric cancer."
However, no one -- neither Devon nor the Bengals organization -- could have anticipated the astounding sales of the No. 75 jersey. The team initially ordered 1,000 jerseys to be made available for purchase, but during the six-week fight, it sold close to 15,000, raising more than $1 million.
"That was when I first saw the impact my daughter was having. She was just making so many people fall in love with her. There are so many things in this country divide us, but to see people from all walks of life step up and purchase those jerseys, it was just amazing."
SURGERY -- On September 25, Leah headed to the hospital for surgery to get her tumor removed. Devon made sure to be home for the occasion, and accompanied her to The Children's Hospital of Philadelphia, where she was receiving her treatment. Not thinking of anything other than finding a way to make his young daughter smile, Devon gave her a pre-surgery pep talk and then shared it with his followers on Instagram.
It immediately went viral.
"Before Leah was diagnosed, I used to post random videos of me and her on Instagram all the time, so I didn't think much of posting that on there. I really thought of it as a video between me and her. But I guess for a lot of people, it became something more."
THE GOOD NEWS -- While the video's success was fun, it paled in comparison to the news Devon received after the nearly six-hour surgery: It was a success and the tumor had been removed. "It was a big weight off my shoulders," he says. "We had gotten so much bad news, to finally get good news was amazing. But, being new to the process, we thought that was the end of the hard part, and we quickly found out it was still a long road ahead of us. "
MEETING LAUREN HILL -- Just a few weeks after hearing Lauren Hlil's incredible story, Devon had the chance to meet up after practice with the inspiring Mount St. Joseph's freshman basketball player, who was battling terminal brain cancer. While he gravitated toward her because of their common and unfortunate bond with cancer, Devon was moved by her willingness to raise awareness for her disease, but also her determination to continue playing basketball despite everything.
"She helped me out a lot," he says. "Traveling back and forth after every game was wearing me out, mentally and physically. I had just had back surgery, so flying on planes and sleeping in the hospital for three days and then going back to practice was really wearing me down. But then I met Lauren, and I saw what she was going through, and how she was fighting cancer herself but still going out there and practicing as much as possible because she just loved the game.
"When I saw that, every time I felt like I couldn't do it anymore or wanted to give up, I thought about her and how she was actually battling cancer and she kept pushing forward. That helped keep me going."
After their meeting, Devon called Leah and told her all about his new friend.
BENGALS HONOR LEAH -- After raising $1.3 million through jersey sales, the Bengals presented a check at halftime in a game against the Jacksonville Jaguars to the Cincinnati Children's Hospital in Leah's honor. Having not been able to attend other games during the season due to her treatment, Leah was thrilled to see her dad in action, and even happier to receive a standing ovation from the adoring crowd.
For Devon, the day was emotional. While he tried to keep his feelings in check during the game, he struggled: "It made it really tough to play football that day. When you're playing football, you're supposed to be aggressive and not mushy and emotional, but that was almost impossible. It was great to see that Leah's battle with cancer wasn't happening for no reason and that some good was coming from it."
The day was special for the Stills for another reason as well: Devon invited Lauren Hill to be a guest of his, and she sat in a luxury box with Leah and the rest of his family. "It was really fun for Leah to meet Lauren," Devon remembers. "I told her about Lauren the first day I met her, and she always asked about her. To finally get to meet her was great. She considered Lauren a close friend even though they had never met before that game."
SEASON ENDS -- After the Bengals' season ended with a 30-10 loss in the wild-card round to the Baltimore Ravens, Devon might have been the happiest player in defeat, as it meant he finally got to go home to be with Leah full time. The season had been tough, as he traveled between Cincinnati and Philadelphia, but he could now finally just focus on the one thing that mattered most -- spending time with his daughter. He and his fiancée, Asha Tillison, moved into an apartment down the street from the hospital to ensure he could spend the most time with Leah. "
It was something I really needed," he says. "When I was in Cincinnati, it felt like the weeks and the days weren't going by fast enough. And at that point, I still had no idea what direction the disease was going in. Every day I spent out there felt like a day I was losing to spend with her.
"I just wanted to make up for lost time as soon as I got home. It was awful to not be with her every day, and comfort her when she needed it. As a parent with a child with cancer, all you can do is be supportive and be by their side. Everything else is in the doctor's hands and God's hands. Being able to be home and be there during those tough times in the hospital, and let her know that everything was going to be OK, was something I really needed."
THE BOOK -- Having captivated the country with their powerful story, Devon and Leah wanted to help children who had been diagnosed with cancer, and wrote a book on their experience called, "I Am Leah Strong." After fielding questions from children and parents alike, the two felt their insight could be valuable to others undergoing the same battle. While Devon says he helped the writing process, he credits Leah for most of it.
"That book was written by her," he explains. "I talked to my daughter and asked her if she wanted to do a children's book to help kids who are fighting pediatric cancer now, as well as kids who will be diagnosed in the future, to help them with the transition from normal life to being in the hospital all the time."
A portion of the proceeds go to pediatric cancer research.
CELEBRITY STATUS -- As her battle continued to get more attention, thanks to her positive spirit and infectious smile, Leah was becoming a national celebrity. From appearing on shows like "Today" and "Ellen," to walking in a runway show at New York Fashion Week, Leah loved her newfound fame. "She thought she was a movie star," says Devon with a laugh.
"I remember the first video she did [with Hoda Kolb of 'Today'], she called me right after and said, 'Dad, I'm a movie star -- cameras were following me everywhere!' I think it kept her in good spirits and kept a smile on her face."
REMISSION -- After months of treatment, hospital stays and a roller-coaster ride of emotions, Devon finally heard the news he had been desperately waiting to hear: Leah's cancer was in remission.
"It was the best feeling in the world," he says. "It was like watching my daughter be born again, because it was like her getting a second chance at life. For that whole time, I constantly was telling her to keep fighting and to not give up, but I realized I was motivating her because I was also really scared. And to see all of her hard work pay off, was just the best. She started cheering and hugging me when she heard the news."
While a patient can't technically be declared cancer-free for five years, and there was still more treatment to be had, Devon was finally feeling hopeful again.
THE DEATH OF LAUREN HILL -- Shortly after receiving their own uplifting news, Devon and Leah were reminded of cancer's devastating wrath. Devon woke to a text message from his brother on April 10th, letting him know Hill had passed. Despite her terminal prognosis, he was stunned and momentarily speechless. "We knew it was going to happen, but when the doctors told her she only had until December and then she kept going and fighting, I really thought she was going to find a way to beat it, she was that strong" he says.
"It took me awhile to get out of bed and to figure out what I was going to tell Leah. She just asked me if the angels came down to get her. She still talks about her a lot -- she asked me about Lauren yesterday. It really affected her."
But, like so many others, Devon knows Lauren's legacy will live on. "She symbolizes so many things: strength, courage, selflessness," he says of his friend. "If anyone else were told they only had a few months to live, they would probably go out and try to accomplish everything on their bucket list. But she gave all that up. She just wanted to help other people and help find a cure for DIPG. I think that speaks volumes about the person she is, and her character. She is one of the toughest people I've ever met in my life."
STEM CELL TREATMENT -- Despite being in remission, Leah had to receive a stem-cell transplant to ensure the cancer would not return, and she was scheduled to return to the hospital for a lengthy stay on the day before her fifth birthday. Horrified that his daughter would reach such a milestone in a hospital room, he decided to surprise her with a trip to Walt Disney World.
Thinking they were going to Cincinnati, Leah didn't know where they were going until they boarded the plane. "It just gave us a chance to get away," he says of the trip. "Disney is a magical place, a place where you can just escape from everything else. I think that's something we both needed before going through another long stay in the hospital."
Devon doesn't know if Leah was fully able to focus on the excitement of the trip, or if she was thinking about what was to come, because she rarely talked about her ordeal. "I think it was always on her mind, but she didn't talk about it much," he shares. "I felt like she understood what was going on, but kept a lot of it bottled up. She was the rock of this situation, she was the strength of this whole situation. She kept us all together. She was fighting for her life and never showed any vulnerability. That was truly inspiring to me."
A SETBACK -- As a consequence of all the high dosages of chemotherapy Leah had received, she developed veno-occlusive disease (VOD), a serious -- and potentially fatal -- infection of the blood vessels and liver. While it was thankfully caught early enough to be properly treated, it was another frightening moment in a year full of them.
"It was really scary," says Devon. "It was the first time in Leah's battle that I felt like she was helpless. She couldn't keep that energetic personality that she always had; she couldn't keep that smile on her face. For maybe about five days straight, all she did was sleep."
Thankfully, Leah recovered from VOD and remained in the hospital for another several weeks to continue her stem-cell treatment. Her smile and positivity quickly returned.
FINALLY HOME -- After what felt like an eternity, Leah was finally released from the hospital. Devon, who had spent his time by her side, or inside his home with his supportive fiancée, was excited to have her back and even planned a welcome fit for a princess for her return. "It felt so good to finally be out of this hospital and to have my daughter home," he says. "It felt weird to not have her home. I really didn't go out at all or do anything when she was in there. I didn't feel comfortable enjoying things and being out with my family and friends when I knew my daughter was in the hospital."
THE PRESENT -- Leah's fight isn't over just yet. She is currently undergoing outpatient radiation therapy every day, and as she currently lacks an immune system; she's confined to the house when not receiving treatment. But according to Devon, she's perfectly content playing with all of her toys and watching TV.
When the 14-day radiation course is over, Leah will undergo a series of tests and scans to see if she remains in remission, or if the cancer has returned. But, per Devon, the prognosis will not change regardless of findings: "The doctor told us it never changes and it's always 50-50. Her being in remission is a good sign, but this is a really aggressive cancer, so kids often relapse. We're just trying to keep positive thoughts, and hopefully it doesn't come back."
THE FUTURE -- While the past 13 months have been a horrific experience on the family, Devon recognizes that his daughter's public experience with neuroblastoma has helped so many. "My daughter has really made an impact on this world in a way that many never do," he says proudly. "She's only 5 years old. She's definitely become a stronger person, and it's definitely changed me. To see a positive thing come out of something so negative has been amazing."
And the ups and downs of the last year have only strengthened Devon's hopeful optimism. "This time last year, I thought I was going to lose my daughter," he says. "I didn't know what cancer was about. All I knew was cancer killed people. That's all I kept thinking about. I thought that I might not have my daughter anymore and that I might not get to see her grow up. It's a relief to know she's in remission now, but the fight is definitely not over. We were able to make it through all the obstacles over the last year, so I really think we can make it through anything."