Finley's Story: “Things are really different now than they were two, even one year ago!”

Finley's Story: “Things are really different now than they were two, even one year ago!”

This June, 7-year-old Finley Kroeker will take part in the 2016 Winnipeg Brain Tumour Walk for his first time. Over the past two years, Finley has gone through more than what most people do their entire lives – and his brain tumour journey continues still. 

“Finley was huge when he was born!” remembers his mom, Shannon. “He was more than 11 pounds at birth but then we noticed his growth slowing a lot by the time he was 2 and 3.” Seeing that Finley’s size was smaller than typical, especially compared to his peers, Shannon started looking for answers to the changes in Finley’s development. By kindergarten, with still no improvements to Finley’s progress, Shannon says that’s when he started to struggle with frequent headaches and exhaustion. After missing a week of school, Shannon and her husband took Finley to their local ER. In the hospital, doctors ran simple neurology tests on Finley, but the then 5-year-old couldn’t keep up says Shannon. “The doctor asked Finley to follow his finger, but Finley couldn’t move his eye to look in the direction the doctor instructed.” CT and MRI scans came next, and that’s when the Kroekers would finally learn what had caused such major changes in their son: Finley had a brain tumour, and surgery was needed immediately to relieve the pressure building up in his skull. 
 
After a fast recovery from the shunt surgery, Finley was diagnosed with a craniopharyngioma – a non-malignant brain tumour but one that has no standard treatment protocol. Doctors wanted to avoid invasive surgery on the young boy, as the tumour’s location on his pituitary gland meant the nearby hypothalamus could be damaged in-operation and massively impact his weight, hunger, sleeping and body temperature regulation. Instead, the Kroekers applied to a 5-year clinical trial in the US as it offered their son access to radiation treatment not available in Canada. In the midst of having to make quick decisions about Finley’s health care, Shannon recalls the serious complications her son went through between his diagnosis and getting to the trial. “Finley got meningitis from the shunt surgery, which meant he had to go back into the hospital to remove the tube and was admitted for three weeks to heal.”   
 
That fall, in 2014, Finley began Grade 1. It was in October when the Kroeker family travelled to Tennessee after being accepted into the clinical trial. While in the US, Finley required another surgery as the cyst on his tumour was growing. Shortly after this surgery the 5-year-old had two strokes and lost the use of his right leg and arm and had limited speech. 
 
An emergency procedure not usually performed on kids was needed to stop the spasms in Finley’s brain. “The week after that operation was so scary,” says Shannon. “We didn’t know if the spasms would stop or how the strokes might affect Finley in the future.” Movement finally returned to Finley’s leg and arm and he was able to start physiotherapy to rebuild his motor skills. In 2015, Finley continued with the trial in Tennessee and received proton radiation to the tumour in his brain. Scans since then have shown the mass is shrinking!
 
Throughout the weeks and months of being apart from friends and family, including, at times, his beloved older sister Zoe, Finley has stayed strong and “only really complains about getting needles,” Shannon adds, laughing. And while last year things felt too fresh for the family to take part in their local Brain Tumour Walk, they are excited to join the annual fundraiser in 2016. “We really want to raise awareness about brain tumours, so that helps bring in more funding for research – and a cure!” explains Shannon. “Plus, it’s important that Brain Tumour Foundation of Canada can keep providing the support and information people need when they are on this journey.”
 
Today, Finley is 7 and a known jokester who loves swimming and gymnastics. He has four more years to go in the clinical trial in Tennessee and is on at least three different medications for the rest of his life. Soon, he’ll start getting growth hormone treatment and then testosterone therapy when he hits puberty, as Finley’s pituitary gland can’t produce the necessary hormones for his development.  It’s been a challenging two years but as Shannon looks back over their journey so far, she is optimistic about how things look for Finley’s future: “Things are really different now than they were two, even one year ago! We’re positive and things are going well for him, so we keep our chins up.”
 
Thank you Kroeker Family for sharing Finley's story and for joining the movement to end brain tumours! The movement is stronger because of you!

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