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While many are hoping this year’s holiday season will feature a little less snow and more freedom to move around, one Amherst family is grateful to be together and on the road to health.
Last year’s Christmas blizzard meant the Kruse family had to stay inside for a few days. It provided the family — parents Mandy and Mike, children Tyler, 12, and Taylor, 11 — a rare chance to sit still, instead of running to baseball and softball practice, and to spend a little time together enjoying each other’s company.
When they were able to start digging out of the historic snowfall, Mike noticed that Tyler wasn’t quite up to his normal strength. “He had no stamina. After only five to 10 minutes of shoveling, he was tired. I joked with him, ‘C’mon, your sister is out-shoveling you, what’s up? She’s 11!’ but we didn’t think anything of it,” he says.
Tyler went back to his travel baseball team’s practice on December 27 but a few hours later, his teammates notified their coach that he wasn’t looking right to them either. Their coach called Mike, saying Tyler’s lips looked blue and encouraging him to take Tyler to urgent care.
Initial blood tests raised concern among the staff at the urgent care facility, sending the Kruses off to Oishei Children’s Hospital – and, uncharacteristically, Tyler asked both of his parents to go with him.
“Remember, all the roads were still shut down in Buffalo from the blizzard. The 33 was shut down. We’re trying to come from the 90, from Amherst,” Mike recalls. Eventually, they arrived at Children’s around 7:30 p.m. Two hours later, they received the diagnosis: Tyler had B-cell acute lymphoblastic leukemia and would be staying in the hospital for the next month. He is still in treatment for this disease by Matthew Barth, MD, a pediatric oncologist/hematologist at Roswell Park Comprehensive Cancer Center in partnership with Oishei Children’s Hospital.
“It’s still something I can’t believe we’ve gone through,” Mike says. “To top it off, December 30 is my wife’s birthday, December 31 is New Year’s Eve and, most importantly, January 7 is Tyler’s birthday. He was turning 13, which is a big milestone for him. It’s his baseball number. We were talking about going to the Bills-Patriots game because he’d never been to a Bills game. Everything was thrown for a curve. He was supposed to try out for modified baseball in three months which was his dream. Everything was on pause.”
Eager to help others
Everything was on pause except Tyler’s determination to help other children in his position. When a family friend designed a “Tyler Tough” shirt, originally for his family to wear in support, word quickly got out to his baseball team and they wanted to help. Soon more than 600 shirts were ordered and a second printing was needed.
“We raised close to $6,000 for the Courage of Carly Fund,” Mike says. That was just the beginning. Tyler wanted to do more to help. “He wanted to give back right away to Courage of Carly because they were helpful and made the experience a little more palatable for him. We did another run of T-shirts and added some hoodies in the spring, then we did helmet stickers for the Western New York baseball and softball community and sold close to 1,000 stickers. He’s donated more than $10,000 to Courage of Carly.”
While still undergoing treatment, Tyler noticed some children were spending a lot of time alone in their rooms, without their parents or grandparents to keep them company. Inspired, he decided to start collecting money and donations of Roku streaming devices.
“I want the kids to have something to do so they’re not all alone doing nothing,” Tyler says.
An organization called Memories Last Forever helped out, donating 115 Rokus to Tyler’s efforts, and thanks to the proceeds from a sale of Tyler Tough hats and the creation of an Amazon storefront, more than 150 Rokus will be distributed to both Oishei and the in-patient Transplant and Cellular Therapy wing at Roswell Park, because “adults shouldn’t be forgotten either,” Mike says.
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A holiday surprise
It’s only fitting, then, that Tyler, who embodies the spirit of giving and the light of the holidays, was asked to be this year’s guest of honor at the Tree of Hope ceremony and will be lighting Roswell Park’s holiday tree.
“There was a photoshoot with some of the Sabres and they took me into a room,” Tyler says. “Owen Power (Sabres defenseman) told me I was going to light the tree! That was really cool! I was very excited.”
The Kruse family has not attended a Tree of Hope ceremony before, but they’ll fill Kaminski Park with their loved ones this year for the event on Wednesday, December 6. “Christmas is my favorite holiday. I like spending time with my family. My whole family will be there, my mom, dad, my sister, my grandparents and aunts and uncles.”
Tyler has a very simple message to share with anyone coming to the event, or anyone gazing down on Kaminski Park from their Roswell Park room.
“I want them to know that I went through this journey too,” he says. “If I made it through this and all the hard times, I know you can make it through the hard times as well.”
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.