“Shandy’s fight was not in vain”

“Shandy’s fight was not in vain”

It was the day before Shandy’s tenth birthday when she told her mom about a terrible headache she’d been having. “Turns out Shandy had kept quiet for a couple of weeks about it,” recalls Barbie. “She didn’t want to worry me.” When the pain continued and Shandy’s attention span declined, Barbie began to investigate potential reasons for the changes in her daughter. Trial and error and several doctors’ visits would result in an MRI scheduled for weeks down the road, and despite her health, Shandy continued on with school and completed Grade 4 with exceptional marks. 

When Shandy’s symptoms progressed to morning nausea and vomiting, but there was still a wait for the MRI appointment, Barbie brought her daughter to their local ER. “That’s when they wouldn’t let us leave,” Barbie explains. 

Rushed into a brain scan, soon the family learned the cause of Shandy’s illness was a golfball-sized tumour in her cerebellum and that urgent surgery was required to remove it. Within days, Shandy underwent a 10-hour operation that successfully resected the large mass – but that was just the beginning of the young girl’s journey. 

For the following two months after surgery, Shandy was treated with radiation and chemotherapy. During this time, the pathology results from the tumour came in and Shandy was diagnosed with one of the most aggressive kinds of medulloblastoma brain cancer. Travelling hundreds of kilometres back and forth between their home in Edson, Alberta and Stollery Children's Hospital in Edmonton, Shandy continued with additional chemotherapy and blood transfusions for six more months. And as severe side effects multiplied, additional medications were added to Shandy’s treatment regimen to help manage their impact. “We just kept promising her that by her 11th birthday, everything would be ok. It was amazing how strong she was – and we had to be equally as strong,” Barbie adds. Just two weeks before Shandy’s 11th birthday in May 2014, the brain cancer was declared “in remission.” 

Sadly, it was a brief reprieve for Shandy and her family as the first follow-up MRI that August showed tumour recurrences in Shandy’s brain and on her spine. Having seen Shandy unable to walk or eat properly due to her previous treatments, Barbie and her husband Rob posed a question no parent should have to ask of their child. “We asked Shandy if she wanted to pursue more treatment and she said she couldn’t go through more pain. She would have suffered more.”

In the four short months between the recurrence and Shandy’s passing, Barbie and Rob saw their once vibrant daughter deteriorate rapidly. Shandy soon lost her vision and was paralyzed, forcing her to stop going to school and begin palliative care at home. One thing that brought a smile to Shandy’s face was the possibility of helping others on the cancer journey. “From the very beginning, Shandy wanted to find a way to fundraise and support other people diagnosed,” explains Barbie. “With the last drawing she made before she went blind, Shandy insisted we try to sell and donate the proceeds to charity.”

Shandy’s dream came true when her drawing was featured in the 2015 Brain Cancer’s Got Me Thinking art show in British Columbia. For Barbie, it’s a fitting tribute to her daughter’s generous spirit and kind heart. “Fundraising has made a huge difference for us – it helps keep our family going.” Barbie and her loved ones plan to host a summer community walk and celebration of Shandy’s life and all other Canadians affected by brain cancer. “People rallied around us when Shandy was sick. This is our way to give back so we know Shandy’s fight was not in vain.”

 

 

 

 

 

Thank you Barbie for sharing Shandy's story!
The movement to end brain tumours is stronger because of you.

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Story posted: October 2015


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