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Inside the Bills: For a grieving family, the Bills provide solace and support

Buffalo News - 10/14/2018

Oct. 13--Be like Sally.

As Matt and Nicole Kabel have dealt with the waves of grief crashing over them since the death of their daughter, they've reminded themselves of those three simple words.

Sally Noel Kabel was just 6 years old when she died at 2:01 p.m. on Sept. 19 at NYU Langone Hospital in Brooklyn. Her body, ravaged by two years of intense chemotherapy treatments to fight Infant Mixed Lineage Leukemia, could fight no more.

When she was born on Sept. 11, 2012, Matt wore a red Bills hooded sweatshirt. The Orchard Park native has loved his hometown team for as long as he can remember, and passed on that fandom to his three children -- Thomas, 12, William, 9, and Sally.

"All three kids, I had to put a Bills shirt on them when they were born," Matt said.

On the day his daughter died, Matt wore that same Bills sweatshirt.

"We hadn't slept in days and I was cold," he said. "Family was bringing us some things to the hospital, and I asked them to grab my sweatshirt. We didn't know that was going to be the day, but yeah, I was wearing this when I was holding her when she passed."

The Bills were a bond that Matt and his daughter shared.

"She knew the Buffalo Bills. She knew the logo," he said. "If I put a Bills shirt and anything else out, she would always pick the Bills shirt. Williams could be playing a video game or I could have a college game on, and she would always say 'Let's Go Buffalo!' She knew what a football was and she always wanted to play. Even a week before she passed, she still loved to play.

"She didn't know what a baseball, basketball, hockey puck was. She didn't know any of that, but she knew what a football was. She knew Buffalo and she knew the Bills."

The diagnosis

Sally was perfectly healthy until about 9 months old. It was then that her parents noticed symptoms of dehydration, paleness and limpness. They took her to the emergency room near their home in Bay Ridge, Brooklyn, and soon, doctors delivered the devastating news that turned the Kabels' world upside down: Sally had the signs of leukemia. She was transferred to Memorial Sloan Kettering in Manhattan, one of the world's leading cancer centers.

Early treatment appeared to work. There was a brief "honeymoon" period, where doctors thought there might not be anything wrong with Sally. On July 15, 2013, however, a routine blood test formally diagnosed Sally with leukemia when her white blood cell count skyrocketed. Specifically, she was diagnosed with acute lymphoblastic leukemia with a MLL translocation of her (4;11) chromosomes -- a particularly rare from that doctors told the Kabels appears in fewer than 50 cases a year around the country. Sally was admitted into Sloan Kettering to begin chemotherapy treatments that lasted two years.

"We had a lot of ups and downs throughout those two years," Nicole said. "She had seizures, she had broken bones, she had a feeding tube inserted on her first birthday, which she used all the way up until she passed away.

She went through all of it with smiles and happiness. We had our ups and downs, but she was a fighter. She was a good kid."

Sally made it through those two years of treatments, and there was a six-month stretch where she was in good health -- a new "normal," as Matt put it.

But after those six months, Sally's parents started to notice her behavior changing.

She was diagnosed with epilepsy as the result of the intense chemotherapy treatments.

"Because of the aggressive nature of infant leukemia, she actually got more chemo than most adults will ever get," Matt said. "That took such a toll on her body."

"She had a neurological decline from it," Nicole said. "She went from being cognitively an average child to more and more impaired over time. Her development just really slowed down. She stopped being able to run and climb. Physically, she didn't have the strength."

Doctors told the Kabels that scar tissue had developed in Sally's brain, which was affecting other aspects of her life.

"When the seizures started, things really declined," Matt said. "She hit a point where, and they're not sure if it's epilepsy related or if her lungs had some form of damage post chemo that she started to develop recurrent pneumonia."

That meant she was put on an oxygen machine over the last year for nearly 24 hours a day, among a plethora of other health issues that developed. Most painful for the Kabels is, they don't know why.

"We don't have any answers yet of what transpired," Matt said.

That includes a cause of death.

"I've seen it a couple times in articles that she died of cancer," Matt said. "We don't think that's what happened. We're not sure, but we don't think so."

The pain of losing their daughter is magnified by that uncertainty.

"It haunts us," Matt said. "We had to make the decisions that no parents should ever have to make, and we made a lot of them over the course of five years of fighting something. ... Ultimately, all of our decisions were based on giving her joy while she was here. We did the best we could, and we can't regret anything, but it still haunts us -- what if we did this? What if we did that? Would our little girl still be here?"

After Sally's death, the Kabels donated her brain and spine to scientists in an effort to learn more about what happened.

That's staying true to how the family approached Sally's illness from the moment she was diagnosed.

"We made a decision when she started treatment that we would share her story, so people could learn," Nicole said. "We knew nothing about childhood cancer.

Their first discovery was "it's a very outdated form of therapy that's extremely painful," Nicole said. "These kids go through hell."

The Kabels hope that by sharing Sally's story, people become more aware of the pain families endure.

"It's like anything in life. People always talk about the good stories," Nicole said. "There's always this taboo of the bad things that happen, people don't share them. People don't know that there needs to be change. Our hope is that, not just for our child, but all of our friends' children we watched go through all these stages with other forms of disease, that people will demand that the government spends more money (in hopes of improving treatment options) so that children don't suffer. It's a national issue."

The Kabels chronicled Sally's fight on social media and a website -- sweetsallysunshine.com. The name of the site is a combination of Sally's nicknames, "Sweet Sally" from mom and "Sally Sunshine" from dad.

Each post on the site is more heartbreaking than the last. The most recent entry, on Sept. 26 by Matt, announced Sally's passing.

"This is the blog post I never wanted to have to write, especially just six years into Sally's life," he wrote. "We needed more time. More time to spend with our little girl dancing, snuggling, laughing. More time for doctors and nurses to figure out what was occurring in Sally's body.

"It was too late. We had run out of time. Instead, I'm sitting here writing from Sally's room, laying on her bed, a lock of her golden hair resting next to me where she slept, trying to find the words to explain what happened. I'm in here because I needed to feel close to her as I wrote. I needed her strength to get me through this."

An outpouring of love

One of the other places Matt feels close to Sally is at New Era Field. The 39-year-old moved away from Buffalo after graduating Orchard Park High School, but never lost his love for the Bills. He took his daughter to a home game in 2015, and fondly recalls her running around the field, gleefully following around the Tim Horton's mascot.

Originally, Matt planned weeks ago to attend the Bills' Week 5 home game against Tennessee with his youngest son. Family trips by that point had become impossible given Sally's need for treatment.

Upon her passing, the Kabels decided to make it a family trip.

"That's something we could never do," Matt said. "They took a lot of effort and planning. There were a lot of things we just couldn't do, because there was so much caring we had to do for her. That comes with guilt, as well. It's easy to just pick up and go somewhere now, but at the same time, it's not with her."

After Sally's passing, the Bills sent the family a care package that included a Bills yearbook, hats, clothes, flags, trading cards, pennants, backpacks and two autographed footballs. It even included unicorns for Thomas, since he's more into those than football.

"The support from the team has just been amazing," Matt said. "Everything they've done for the kids has been great. We like to go places where we can feel Sally, and downstairs on that field, I felt her."

Prior to the game, the Kabels got to meet former Bills center Eric Wood and running back LeSean McCoy on the sidelines. William even got to catch a pass from running back Taiwan Jones. They posed for a family picture with the field in the background, and Matthew became emotional as he realized that it was the first one taken without his daughter.

"We were told that part of the healing process is we have to create new memories, and today, this weekend, is our first new memory," he said. "This is our first step."

In the last picture her parents took of Sally before she was admitted to the hospital, she was wearing a Bills dress. Matt had the game on against the Chargers in Week 2, but he turned it off at halftime. His daughter was uncomfortable, and needed him. So, Matt snuggled with her in silence for what would be the final time.

"This was right before we took her to the hospital," Matt said. "I needed to spend that time with her."

As parents of a child with cancer, the Kabels always felt divided.

"You always go to the one who is in the most danger first," Nicole said. "You have to put 80 percent or 90 percent of your energy into trying to save the life of one child, and that leaves you very little for your other children. We are very, very fortunate that we had a massive village of people -- family and friends -- to pick us up."

That includes members of the New York City Buffalo Bills Backers, an organization Kabel co-founded and serves as the president of. After Sally's death, the group's meeting spot -- McFadden's -- was decorated with sunflowers in honor of Sally. A moment of silence was also held.

"The whole Bills community, through social media, we have gotten so many words of support," Matt said. "Bills fans from around the country who maybe followed her story -- a bunch of them have reached out. Everybody -- from the organization, to friends, to fellow fans, has been so supportive."

#BeLikeSally

Before her passing, Sally's classmates at the Manhattan Star Academy presented her with a plaque for being the "class best friend."

"That makes me extremely proud, because it shows how loving she was," Nicole said. "She would cheer everybody on. It was always, 'You can do it!' Most people who have degradation of the brain like Sally did, they lose the ability to speak and communicate. She was losing the ability in her organs and everything else in her body, but she never lost that. She was very emotionally and fully engaged in her life.

"She was able to be excited and high five. If she caught a ball, she wanted a high five from everyone. She just loved to spread her joy."

That's why Matt has included the hashtag #BeLikeSally in his recent tweets.

"She didn't have a bad bone in her body," he said. "She was a common thread that brought a lot of people together in divisive times for everybody. She loved everybody, no matter who they were.

"So, before you have a bad thought, be kind. Hug your kids instead. Just do something nice, and if you do something nice, share and let people know. In her honor, do that."

In other words, Be Like Sally.

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