03 Dec Village of Support
North Lake Tahoe community steps up to help a family in need
In November 2015, Kyla Yorkey was an active, happy little girl. Talkative, energetic and full of smiles, she loved making her new baby sister laugh and running around Incline Village’s Village Green, throwing tennis balls to the family dog. In her first two and a half years of life, she only had one fever and a handful of runny noses.
Later that month, the Yorkeys were in South Lake Tahoe with family cutting down a Christmas tree, and a few of the relatives had minor colds. Two days later Kyla got a runny nose and a persistent cough. She was lethargic, her stomach hurt and she looked pale.
“She couldn’t get the energy to really do anything except for ten minutes here or there,” says Shelby Yorkey, Kyla’s mother. “She’s always been full of energy, running around smiling and laughing. But she would walk up the stairs and say her legs hurt.”
When Kyla’s cold lingered, Shelby scheduled a doctor appointment in Truckee on December 8. Shelby remembers the day clearly—Kyla’s lethargy, stopping for a snack and how upon arrival her child jumped up on a chair in the waiting room, suddenly lively and full of chatter.
The pediatrician confirmed what Shelby thought—Kyla was at the tail end of a virus. But because Kyla looked pale, they did an in-office blood prick just to be safe.
“It still gives me chills thinking about it,” says Shelby. “I remember when the doctor came back in and she had this awful look on her face. I just knew something was wrong immediately.
“[The doctor] said, ‘I don’t want to scare you. It could be something else, but her hemoglobin level is so low, the first thing that comes to my mind is leukemia.’ And I remember it was like someone knocks you out. I was shaking, holding Kyla, the room was spinning and turning black. I could hardly even stand there.”
After a blood test and two painful hours of waiting, the Yorkeys were advised not to return to their Incline Village home, but to go straight to the UC Davis Medical Center in Sacramento, where a room was already waiting for Kyla. Her hemoglobin was dangerously low, and they might not have been able to spare the extra hour.
For the next five days doctors worked tirelessly to figure out what was wrong. On December 13, Kyla was officially diagnosed with Acute Lymphoblastic Leukemia (ALL).
The Yorkeys’ world had been turned upside down. They began a new life centered around Kyla’s treatment.
The UC Davis Medical Center staff did its best to make the holidays a little brighter for Kyla and her family during their initial stay, providing gingerbread houses to decorate, photo by Jen Schmidt
Adjusting to Cancer
The family slept in the hospital room for another week after the diagnosis. Between a sick Kyla, a breastfeeding baby, nurses checking vitals every couple of hours and Kyla’s IV drip running out every half-hour, Shelby says they slept about eight hours total in the first week. “Sometimes in the middle of the night I still hear the hospital beeping noise,” she says.
With the stress of a sick child and the challenge of severe sleep deprivation, the Yorkeys needed all the help they could get. Family members brought toiletries, clothing and other items they had not been able to get when they rushed down to Sacramento that first day.
Lorinda Hedger, a registered nurse at the UC Davis Medical Center, met the Yorkeys their first week at the hospital.
“When she was first diagnosed, they basically had to uproot their family from their home with a very young baby, and they had to live down here in Sacramento for all the initial stuff,” says Hedger. “They did holidays down here, they did it all transplanted. If you’re ever diagnosed with anything you go where the best care is.”
For six weeks the family stayed in Sacramento for Kyla’s induction phase, during which aggressive chemotherapy is administered. Loved ones, friends and even strangers sent food and gifts. The medical center provided gingerbread houses for the kids to decorate. Family members brought a tree and ornaments, but Kyla didn’t feel well enough to play or open presents.
“She didn’t want to do anything except eat and lay in bed and moan,” says Shelby.
Although she doesn’t necessarily understand the scope of what has happened to her, Kyla understands that she is sick and fighting to get better, photo by Jen Schmidt
When the Yorkeys, who are longtime members of the Tahoe community, returned home in mid-January, they were met with meals, fundraisers and a whirlwind of support. Shelby grew up in Incline Village, and her husband, Scott, has been executive chef at Jake’s On The Lake in Tahoe City for nearly 12 years. Shelby’s parents still live in the area as well.
During the Yorkeys’ first stint in Sacramento, the Tahoe community began to lend its support. The families involved with Tahoe’s Connection for Families (TCF), where Kyla and her parents attended classes and play sessions, arranged everything from meal deliveries to Christmas gifts.
“We consider all TCF members as part of a TCF family, so when any of our families need our help, we step up,” says director of education and TCF founder Laurean Meyer. “We sent care packages to Kyla in the hospital, including a doctor’s kit, stickers, things to keep her engaged… we also FaceTimed with her during Circle Time when she couldn’t attend, and she got to sing songs and play games as if she were attending TCF that day.
“It was so good for everybody—the kids were waving to her and walking up and putting their faces right up to the screen.”
During Kyla’s first few months of chemotherapy treatments and countless trips to Sacramento, TCF members took turns bringing meals and making sure the Yorkeys always had dinner waiting for them when they returned home
Kali Smith, Shelby’s lifelong friend and fellow 2001 Incline High alumna, says she felt unsettled from the moment she received a hurried text about Kyla on December 8. Smith gave birth to her second child on December 9 and could not imagine the burden Shelby and Scott were bearing.
Smith’s husband, Dustin, came up with the idea of creating a GoFundMe fundraising webpage to help the Yorkeys with their financial burden. He had found that, according to the U.S. National Library of Medicine, the average out-of-pocket cost of childhood ALL treatment ranges between $55,000 and $160,000.
Smith thought that Shelby, being a private person, might not allow her friend to set up the webpage. With encouragement from her husband, Smith finally asked. “I remember I texted her and she got back to me, like, ‘GoFundMe? What’s that? Do you think people would actually donate?’”
Smith knew people would donate. Friends and loved ones had asked her repeatedly how they could help. She also grew up in Tahoe and had seen how the community comes together to help its own.
She and Dustin set up the GoFundMe page in early January 2016. “It really opened up my eyes to how amazing people are,” Smith says. “There were a couple people who donated some really random numbers, like $23 or $19.”
When she showed the numbers to her husband, his response gave her goose bumps. “He said, ‘Kali, think about it. If it’s a weird number like that, that’s probably literally all someone can donate.’ When he put it in those terms for me… that’s incredible. Someone is doing whatever they can, and that just warmed my heart.”
In late February 2016, Jake’s On The Lake arranged a fundraiser for Kyla that included a full buffet provided by Jake’s, the restaurant’s purveyors and other local restaurants for $25 a person, with 100 percent of the proceeds going to the Yorkeys. Businesses lakewide donated to the silent auction and raffle—everything from hotel rooms to art, gift certificates, clothing, personal chef services and gas cards—while all Jake’s staff members donated their time and tips.
“As soon as people knew the story behind it, then everyone wanted to participate,” says Jeff Hill, general manager at Jake’s. “Even before the event happened, people said, ‘I can’t be here, but here’s $100, I just want to contribute.’ That is the sentiment that was just so overwhelming.”
Close to 400 people attended the event that day. Hill had been hoping they would be able to raise $20,000, but the final tally was closer to $33,000.
“It was just amazing, so moving,” says Shelby. “I cried the whole night, I feel like. There was nowhere to sit; standing room only. The line to the buffet wound all the way up the stairs and out the back hallway.”
Other local businesses stepped up, too. Tim and Lauren Salveson, owners of IVY Studio Tahoe, offered donation-based yoga classes that benefitted Kyla and are planning a golf fundraiser in the spring. Tahoe City’s Trunk Show contributed proceeds from its anniversary party, while Northstar California’s Autumn Food & Wine Festival, which Scott has participated in for years, donated money. Participants in the SnowFest! Ladies’ Night Out Bunco Bash pitched in, too. There were even a few regulars from Jake’s whose churches donated out of the blue before the GoFundMe account was up and running.
The bills and insurance are convoluted and never-ending. Despite hitting their $20,000 maximum annual out-of-pocket in December and then again in January, Shelby still spends hours upon hours sorting everything out.
During the girls’ naptimes, she’s on hold, calling their insurance company, then the hospital, then insurance, then hospital again, double-checking bills that have errors or duplicate services on them, which sometimes makes a difference of thousands of dollars. It can take an hour to reach the right person on each call.
“It’s just a back-and-forth game; you have to be so diligent and so on top of them,” she says.
The GoFundMe page enables friends and strangers near and far to donate so the Yorkeys can focus on Kyla’s health first and foremost. They’re able to help her thrive rather than just survive.
“When the bills come in, it’s not, ‘Oh my God, where are we going to get this money?’ Just to have that support has taken a huge weight off our shoulders,” says Scott. “It allows us to be able to focus on her a little more instead of worrying about all of those other things.”
Shelby, Kenzie, Kyla and Scott Yorkey play together during a mini-session photography fundraiser in early October 2016. Thanks to the kindness of friends and strangers alike, Kyla and her family are thriving. To visit Kyla’s GoFundMe page, go to www.gofundme.com/kylastrong, photo by Jen Schmidt
When the time is right, the Yorkeys would like to give back, either with education or fundraising. Shelby says maybe they’ll organize a soccer event—“Kick Cancer with Kyla”—or something raising money for pediatric cancer or the Northern Nevada Children’s Cancer Foundation, which paid the Yorkeys’ mortgage the first month of Kyla’s treatment, as well as a handful of other bills like utilities and Scott’s gas to get back and forth to work from Sacramento.
“It’s been a rollercoaster of emotions, of course, and it will continue to be,” says Shelby. “And you just pray that it doesn’t come back. The horrible thing with the chemo is it’s saving her now, but the effects that it has on kids in the future are awful.”
Kyla’s intense chemotherapy, which began the day of her diagnosis, ended in early September 2016; until February 2018, she will be on maintenance chemo. Five days each month she is on steroids, which wreak havoc on her system and emotions.
Despite and because of everything she’s endured, today Kyla is thriving.
“We’re having a lot more good days than bad days, especially recently,” says Scott. “Just to see her with a huge smile on her face and running around in the house and playing with her little sister and dog, it just makes you want to keep fighting and keep doing whatever we can to support her little body to get through this.”
“I remember telling the parents, ‘This will get better, this will get better,’ and I’m sure they did not believe us for a minute,” says Hedger. “And now they walk in and she just leads the pack… she’s blossomed and is completely OK with this, within reason. She has to come in and get a needle in her chest and she’s just like, ‘OK, well, let’s do this.’”
Shelby says Kyla has become accustomed to her blood draws, and wakes up asking her mother if she has to “go get my poke today.”
“It becomes their routine and it’s all they know,” says Shelby. “All she does is play with her doctor checkup kit, still to this day. She wants to check everyone out. She gives them pokes, she draws their blood, she does the heparin, she does the numbing cream before.
“She’s come so far. Now when she does her pokes, she puts her chin up, she doesn’t make a sound, she’s reading her book. She’s so good.”
Although she doesn’t necessarily understand the scope of what has happened to her, Kyla understands that she is sick and fighting to get better.
She also knows how many people are rooting for her.
“I know that one day she will understand because we’ll never stop telling her, ever. I think daily we tell her how many people are supporting her and supporting us, and on her side and helping us all through this,” Shelby says. “I think one day when she’s a little older she’s going to do amazing things because she’s going to want to help people, too. I know so.”
Shelby says she has a long list of people she’d like to write personalized “thank you” letters to, and it pains her that she will never be able to personally thank every person.
“I want everyone to know how appreciative we are,” she says. “I need everyone to know. We would not have been able to get through this without the support.”
Jen Schmidt is an Incline Village photographer and writer. She has known the Yorkey family since she photographed Kyla as a newborn in 2013. In October 2016, with Kali Smith’s help, Schmidt hosted mini-sessions on behalf of Kyla, raising nearly $2,500. Kyla calls Schmidt her buddy, and the feeling is mutual.
Visit Kyla’s GoFundMe page at www.gofundme.com/kylastrong.