Parents Janet and Dan Sawatzky paced the hallways – urgently needing the results, yet at the same time not wanting to know them. Those felt the longest days of their five-year-old son’s life back in the fall of 2016.
Janet tears up today recalling those three days. Prior to arriving at the hospital, she and her son Alexander had been out for a hike when her healthy little boy started veering left.
“His balance was off and my mom brain just thought – don’t wait; take him to a doctor right away.”
So Janet took him to their local health facility in Winkler. There, the Boundary Trails Health Centre team checked in with HSC Winnipeg Children’s Hospital for input and were told to do an urgent CT scan. The results prompted doctors to send Alexander and his family that same evening to the Children’s Hospital.
“We were told there is a mass in his brain that shouldn’t be there. My world dropped out from under me. I was falling and didn’t know when it would stop.”
Alexander had been their miracle baby. Janet was told she and Dan would need fertility treatments to have children, but while they looked into treatment they became pregnant naturally.
“He was a big baby and stayed a little giant,” Janet laughs, “but a gentle giant — so unique because he was so loving and kind. He loved to give hugs and to give other kids toys.”
While waiting for the test results at HSC Children’s Hospital, at times as many as five physicians would line the room checking varying aspects of Alexander’s symptoms and doing additional tests. Those were difficult and long days for the parents as well as their two-year-old daughter Victoria who was missing seeing her older brother. Yet Janet remarks, “We were blown away by the amazing care we were receiving.”
At the end of the three days the news was more than any parent should have to bear. Alexander’s diagnosis was DIPG (Diffuse Intrinsic Pontine Glioma), a highly aggressive brain tumor at the base of the brain where body functions are managed. There is no surgical treatment. The family was informed that Alexander had three weeks to just a few months to live.
The family opted to stay for radiation therapy at Children’s Hospital for six weeks in hopes of giving him more survival time.
“The treatments were hard on him. It was hard on me. It was about taking it minute by minute – no ability to look ahead. I didn’t eat and I couldn’t sleep — I was so afraid he’d die while I was asleep.”
Yet Janet also looks back on those few weeks fondly because, amid the treatments and stress, there are happy memories of their time there. Of nurses hustling to the cafeteria to get Alexander what he wanted to eat after he would wake from his radiation treatments. And the happiest being when Child Life Specialist Jessica would take Alexander to the playroom.
“It was there that his eyes would light up,” says Janet. In the hospital playroom amongst the toys and doing crafts, Alexander could just be a kid, instead of a sick kid. Janet still keeps his hand-painted Thanksgiving turkey craft that he made while there.
“In the hospital playroom amongst the toys and doing the crafts, Alexander could just be a kid, instead of a sick kid.“
She also recalls Alexander sitting in his bed and saying, “Mom, do you think Jesus loves bear hugs? When I see Jesus, I’m going to give him a big bear hug.”
From this, Janet and Dan felt their young son understood what was to come and as a family they found peace with it. After the six weeks of treatment there was improvement but no change in the prognosis so the family decided to return home to Winkler.
They continued to receive care in Winkler from community doctors and nurses. Alexander for a time was able to attend school to be with friends. Janet went along every day to ensure he got his medications and eventually the school was able to put care in place to relieve her. “Some days he could walk and other days he went in a wheelchair. He loved school, so it was very special for him to be there,” says Janet.
The family was even able to take Alexander for a January vacation to West Edmonton Mall where Alexander mustered up super-kid energy and enjoyed time in the waterpark.
But by April 2017, Alexander started losing too much function to return to school. The family and community palliative care support kept him comfortable, and on June 5, 2017, Alexander died in his home surrounded by his loving family.
The following year, while supporting a cancer group they belonged to, called the Candlelight Children’s Cancer Group, Dan suggested a fundraising challenge in which, if a certain amount of money was raised and toys purchased for kids at HSC Children’s, he and his brother would ride the 140 km from Winkler to the hospital to drop it off themselves. The group met and exceeded the challenge.
Dan and Janet continue to organize Alexander’s Ride as a toy drive for the playroom.
“We honour his memory with this every year on the Saturday closest to his date of passing. We know Alexander would have wanted other kids to experience that playroom the way he did,” says Janet.
Did you know monthly donors support programs like Child Life and the playroom at Children’s Hospital all year long? You can honour families like Alexander’s by signing up as a monthly donor today. Tax receipts are issued annually.
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