Kaylen Birk was a gamer, a fighter, a little more than a bit stubborn and a lot loving and caring.
She was not inclined to let anything stop her from going to school and being with her friends as long as she possibly could – not even a disease that, in the end, could not be cured.
Kaylen kept going to school until the day before she passed away. She died Saturday, less than a week before she would have turned 7.
The plight of Kaylen and her family gave rise to an overwhelming show of support and assistance that filled and then and spilled over from the Lincoln Elementary School community to involve hundreds more people in Wauwatosa.
Lincoln will have a all-school birthday party for Kaylen on Thursday, with cake for everyone and a release of live butterflies.
They will share the recipe and design she had told her mother she wanted – "My cake is going to be chocolate ice cream cake with vanilla ice cream and chocolate frosting," she told her mom. "It will say 'Happy Birthday Kaylen' in gummy bears... and it will have a pink heart."
And so it will.
'A devastating diagnosis'
Entering April, Kaylen was a perfectly normal, healthy and vivacious little girl with no signs of any silent threat inside her. On April 3, she had a small accident at school, in her Lincoln Elementary kindergarten gym class.
Kaylen collided with another child and came away with a broken nose and a mild concussion. She was treated at Children's Hospital of Wisconsin and released the same day.
But the next day, she did not seem all right, and her family rushed her back to Children's for another look at that concussion. Doctors ordered CT and MRI scans.
Tragically, it was no mere concussion that made Kaylen seem "off" and "out of sync" that day. The scans revealed a "diffuse infiltrating pontine glioma" in her brain stem – an aggressive tumor, inoperable and generally considered incurable.
"It was a devastating diagnosis," her mother, Kathy Birk, said. She and her husband, Jon, refused to take "considered incurable" as final, however. There was a doctor in Chicago who was developing a new treatment that showed some signs of promise.
The Birks pinned their lives on that slender hope and made their little girl a candidate for therapy. They said at the time that even if their worst fears should come true, at least Kaylen would be helping to advance knowledge about this disease that was tearing at their hearts.
An outpouring of concern and kindness
The moment the word got out, help began to pour in, help with cooking and shopping and babysitting Kaylen and her brother, Thomas. But that was just a first response. Much more was in store.
Lincoln moms connected with former alderman Michael Walsh, who agreed to use some civic connections to sponsor a fund-raiser if they would form a volunteer committee to do the heavy lifting.
They did. On June 28, more than 1,500 people turned out in Hart Park for the Koncert for Kaylen. Chris Leffler donated dinner from Leff's Lucky Town, and Brian Leahy donated a night of music. The Lincoln Brownie Troop held a bake sale. The event raised over $35,000.
The support continued throughout the summer as
Sadly, Kaylen's treatments could not save her – though someday, perhaps sooner than otherwise, another child will survive DIPG thanks to what Kaylen taught.
The family vowed to give any donated funds remaining after Kaylen's treatment ended to research, regardless of the outcome.
A father's testimonial to his special girl
Kaylen's dad, Jon Birk, wrote the following memorial to her on her CaringBridge pages, which the family agreed to allow Wauwatosa Patch to share:
"It’s with great sadness that we inform you about the passing of our daughter, Kaylen Elizabeth Birk. Kaylen passed away in total peace very early on Saturday morning, with Kathy and I watching over her. When she passed away, she truly looked more beautiful than ever. We will never forget that moment when God took her home.
"Due to the severity of her disease, we knew the cold statistics of her survival from day one. While we have been attempting to prepare for the day when Kaylen moved on, we are both happy and sad that her end came a bit faster than we expected. She really did not suffer, and she absolutely refused, until the very last moment, to give up. Kaylen fought right until the very end. This was completely in line with her personality and nature. Kaylen wanted (insisted) to continue going to school and seeing her friends until she could no longer physically do so, just the day before God took her home.
"If you knew Kaylen, then you knew certain things about her that made her truly special. Wise beyond her years, Kaylen at times seemed years older than she was. Kaylen was also remarkably smart, accomplishing many things we marveled at, and performed so very well at school.
"The day after her passing, many of our friends and family were with us throughout the day. So many stories about Kaylen were told, most of them revolving around Kaylen and her quick tongue and sharp personality. Stubborn as an ox, and so very strong-willed, if she didn’t approve of something, she certainly let you know about it. At the same time, Kaylen was the most caring and loving little girl in the world. She had so many good friends and loved being with people.
"Kaylen will live with us forever, and we look forward to the day when we can be with her again in God’s Kingdom. Until then, not a day will pass when our family will not be thinking about her. While her passing does not make sense to us, and we struggle with why this has happened, she is now an angel watching over us. We love you Kaylen so very much."
– Jon, Kathy and Thomas Birk
Funeral arrangement for Kaylen were still being finalized Tuesday afternoon.
Tentatively, services were being planned for Thursday at St. Sebastian Catholic Church, 5400 W. Washington Blvd., Milwaukee, with visitation from 3 to 7 p.m. with mass to follow, with a reception to follow mass at a location to be determined.
Final plans and a formal obituary were to be released early Wednesday.