It is every parent’s worst nightmare, and for Amanda and Garrett McCallum of Brockville that nightmare has just begun.
On Sunday Aug. 30, Amanda, a 27-year-old mother of two, was at work at Winners, but was distracted thinking about her five-year-old daughter who had been under the weather lately.
“I left work early, and decided to take Hope into emerg,” said McCallum.
Still, she never imagined it was life-threatening. She knew something was wrong and thought it might be as serious as kidney problems but that was as far as she was willing to go in her mind.
“We had started noticing something just wasn’t quite right about three weeks ago. Hope would sleep a lot more than normal. A normal thing for a child, like jumping off a couch, would make Hope scream and cry in agony,” recalls Elizabeth Helmer, Amanda’s best friend.
The McCallums had barely arrived at Brockville General Hospital’s emergency department, when they were whisked into triage and nurses started taking blood samples from Hope.
“After about half an hour, I noticed the nurses started looking at me differently. They weren’t laughing and talking outside our door; it was weird,” said McCallum.
Another half hour went by before a doctor walked in. He started to tell McCallum what he suspected.
“I really don’t remember anything after he said the word ‘leukemia.’ I know I started to cry,” said McCallum. “Within an hour of arriving at BGH, we were in an ambulance headed to Kingston.”
Sometime during the ride, or maybe after arriving at Kingston General Hospital, McCallum reached out to Helmer.
“It was supper time. I remember because I had a mouthful when I answered Amanda’s call. She was bawling so badly at first I couldn’t understand what she was saying,” said Helmer.
Five year-old Hope has been diagnosed with Acute Lymphoblastic Leukemia and is being treated at KGH. She has youth on her side and a very good chance of survival, but will need to follow a gruelling two-and-a-half-year treatment protocol that includes chemotherapy treatments injected directly into the spinal column, according to McCallum.
It is as she recounts this last indignity to her daughter’s body that McCallum breaks down completely.
But Hope is a sunny, cheerful little girl, with a wisdom beyond her years.
“She’s strong, she’s so strong, so positive and funny about it too, it’s like she’s 80 years old,” continues McCallum.
“Hope is this five-year-old spitfire; she is the most caring, loving and kind-hearted girl. She is also way too smart for her age,” said Helmer, herself a mother of three, whose eldest daughter, Nevaeh, age eight, counts Hope as a special friend.
“She’s always really nice to me; she’s like my little sister, and she always brings her stuff over and likes to play the same things I like,” said Nevaeh.
Now that Hope is so sick, Nevaeh says she’s going to see her friend all the way through this bump in the road.
“I’m going to support her. I just made tonnes of presents for her and I’m going to support her,” said Nevaeh, emphatically.
Both McCallums, mother and daughter, would have been starting school this week. Hope would have been going to Heritage Christian School and Amanda had already given two weeks’ notice at work, and was looking forward to starting a program in mental health and addictions. School is on hold now.
Hope’s treatments mean she has to be driven to Kingston twice a week for three to four hours of chemo most days, or as long as six hours on some days – with all the parking expenses added on – for the next two-and-a-half years.
“When my boss at Winners found out what had happened he said: ‘I’m keeping you on the schedule,'” said McCallum, choking up. She’s been told she’ll be able to take a leave of absence, for which she is very grateful, but as she points out, that only gives her eight weeks.
And the expenses are adding up. For now Hope’s treatments are covered through her mother’s work benefits and the Cancer Society, but McCallum has been told that there will be drug expenses as treatment progresses.
Their home has to be altered to make if safe for Hope. Her condition means she bruises easily and those bruises can be very serious. When she gets even the smallest bruise, McCallum says she has to call the doctor immediately and then monitor the bruise until the bleeding stops. If Hope were to cut herself, they’ve been instructed to rush her to hospital.
“I took Amanda shopping last week, because she had to remodel Hope’s bedroom to make it safe for her – she had one of those high beds with the desk under it, but that’s not safe for her now,” said Helmer.
With a younger child at home, McCallum also has to arrange babysitting on treatment days, because her husband Garrett works full-time in Ottawa and they need the income.
“We’re going to do some fundraising together. I used to make candles to sell, and Hope is going to design a candle with me, that we’re going to sell on my Instagram page – @CandlesByDelight,” said McCallum.
But there are others in the community already thinking ahead to the expenses that will continue to pile up as Hope’s treatments progress.
Helmer started a Go Fund Me page. In less than a week she raised more than $10,000.
As of Thursday afternoon, that total had climbed to $11,435.
Sweet Life Café on King Street is launching a cookie fundraiser for the family, even though they don’t even know the McCallums.
“We were contacted by a friend of the family. We don’t know the family directly, but I just felt bad for them in a time of need, with all the driving they’re going to have to do for the next two-and-a-half years and what they’re going through,” said Jennifer Miller, at Sweet Life Café.
Meanwhile, Helmer says, Hope is a fighter and her doctors are amazed at how well she’s coping. According to Helmer they credit Amanda and Garrett for Hope’s sunny optimism. The couple have been careful to keep their worry and emotional agony to themselves.
“I try not to let her see what I’m feeling, but it’s hard,” said McCallum.
Her efforts may be unorthodox but they seem to have the desired effect on Hope, as Helmer explains.
“There are lift devices at Kingston General, that include ropes and cables, and the other day, Amanda was zip-lining on the device just to make Hope laugh,” said Helmer.
COVID-19 restrictions just add another layer of difficulty, restricting the number of people who can be allowed into the hospital. Only one family member is allowed – Amanda.