It’s always a tragedy when a family loses a loved one to cancer, but when that loved one is still a child who has not yet had a chance to fulfill her promise, that loss stings just a little bit more.
For Cory and Lisa Boulerice, that nightmare scenario came to pass when their five-year-old daughter Kali passed away following a two-year battle with several brain tumours.
Kali was a feisty girl, Lisa said. She was also a bit of a girly-girl who was in love with horses, but also very opinionated and determined.
“I think that’s truly what kept her alive for so long,” Lisa said. “She was determined to never give up in anything she did.”
The family’s ordeal started in 2004, shortly after Kali turned three on Aug. 21. Lisa said Kali had started complaining of pain in her neck while she was playing on a swing set.
A few days before they went to the doctor to get her neck looked at, Kali started throwing up. Lisa said she didn’t draw a connection between the two events, thinking Kali was just coming down with a flu bug.
When they got to their pediatrician, he decided to send Kali to the Stollery Children’s Hospital for an MRI to get a better idea of what the problem could be.
It was that test that finally shed light on what was ailing Kali.
“When you bring them in they say one parent can bring them in and when she wakes up one parent can get her,” Lisa said. “It was taking a very long time and then they came out and they told both of us to come in. They led us to a little room and informed us that they had found a brain tumour.”
The doctors were not able to say much more at that point, other than it was necessary to operate on Kali to remove the tumour.
“Being in shock, I was like ‘When do we bring her back?’” Lisa said. “Then they’re like ‘No, you don’t get to take her.’”
That was Sept. 3, 2004.
Stollery doctors brought in a surgeon from Vancouver the next day to perform the surgery. Kali was in the operating room for more than eight hours, and when the surgery was complete, the doctors had removed a tumour, specifically an ependymoma, the size of a Christmas orange from her brain stem.
The doctors found the problem and acted just in time, Lisa said, as the tumour had only just started to attach itself to Kali’s brain stem.
“If the doctors had said ‘No, she’s fine, it’s just a headache,’ and they did not send us, it would have attached to the brain and they wouldn’t have been able to remove it,” she said.
Lisa said the doctors were unable to wrap their heads around how Kali could have had almost no symptoms from a tumour that size when she was so young. Even their pediatrician said he had thought what was wrong with Kali was a small problem; it never crossed his mind it could be so serious because she had no outward symptoms.
After the surgery, Kali spent the next two weeks in the hospital recovering and doing “phenomenally well,” Lisa said.
It was at that point when doctors determined Kali needed radiation treatment, which brought with it a 60 per cent survival rate because of the damage it can cause to the brain.
What also needed to be worked out was how the treatment would work because, at three years old, Kali was at a hard-to-treat age. Had she been younger, there would have been one protocol to follow, and if she were older another protocol would have applied.
The next six-and-a-half weeks saw Kali receive radiation treatment daily at the Cross Cancer Institute in Edmonton.
The CCI is a “really horrible place,” Lisa said, but the doctors there made it fun for Kali by creating a chart for her to track her progress and let her choose her own stickers to mark the days. As a horse lover, naturally she chose pony stickers.
Each treatment was a two-and-a-half hour ordeal. Because Kali was so young and small and had had a tumour on the brain, the doctors put her to sleep before the procedure. Once she awoke she needed to be monitored for a while to make sure she was OK.
The radiation treatments continued until December 2004, at which point Lisa said Kali was doing quite well.
Kali’s good health continued until the summer of 2005.
“I started to notice some signs of something just not being right,” Lisa said.
Having gone through surgery to remove a tumour, Kali was being monitored every three months to keep track of her health.
In September, Lisa took Kali back to the hospital.
“I knew that there was something wrong and they came in and they said that they had found another tumour, but it was in a completely different spot,” she said.
This meant another surgery was required, but since Kali had already done radiation treatment, it was not possible to radiate the brain again.
For Lisa, it brought out a whole new set of worries.
“As soon as it happens, I had so many questions,” she said. “They don’t have a lot of answers because the day they take it out they don’t know what kind of tumour it is. They don’t know what kind of treatment it will be. But the one thing they told me was, what happens if it comes back? They said you don’t want to think about that because there’s not much we can do.”
Unfortunately, shortly after Christmas, it became something the family had to think about when doctors found a third tumour in a different place on Kali’s brain.
“It was at that spot when I guess she got diagnosed as being terminal,” Lisa said.
That determination presented Lisa with another challenge she needed to face.
“When you find out your child’s terminal, you have to make a choice how you’re going to tell them is what I thought,” she said. “I really thought ‘How am I going to tell her?’ But I didn’t need to, because she knew. No one ever told her, and yet one day when she was sicker, she just looked at me and said ‘Mommy, will you miss me when I’m in heaven?’ and that was very hard obviously.”
In February 2006 doctors found a fourth tumour.
“Then, miraculously after that, from about March till about July, she was like the best she’d ever been,” Lisa said.
During that time Kali got a pony to ride, arranged by the nurses at the CCI, and spent the entire time happy.
However, in July she started to need morphine to deal with the pain she was experiencing.
Still, despite the pain, Kali continued to show the fighting spirit she had maintained since day one, Lisa said.
“She would be in a lot of pain and then a song would come on that she loved and she would get up and dance and then she’d be like ‘Mommy, I’m tired,’” she said. “She still had that energy just for that few minutes to dance, which is one thing that amazed me. She had so much strength.”
Throughout the entire experience, Lisa said Kali never once complained or questioned why she was being put through all the pain and suffering.
“It almost seemed like when she got diagnosed, she had this little personality of somebody much older than she was and she completely accepted it,” she said. “She never ever complained. I really think she felt like she had to protect everybody.”
As July rolled into August, Kali’s condition continued to deteriorate. She had been on medication the previous two years to stop her from throwing up regularly, but it stopped working and she started throwing up again.
She spent a lot of her final days at home, which Lisa considered a blessing because of the support available from family and friends, including a nurse friend who stayed at the house.
“One thing people said when they came to our home was that it actually seemed like a very pleasant place,” she said. “There was just really good energy; it was just very calming.”
Eventually Kali’s body started shutting down, Lisa said, and she started seizing off and on for two weeks. During this time, all she would say was ‘I love you.’ It was mumbled, Lisa said, but you could tell what she was saying.
Around October, Lisa said the end started to look closer.
“She ended up seeing angels, which was actually very comforting for me because she’s telling us all about this and she’s not scared,” she said. “She was super excited to see the angels and she heard bells. The first time she heard bells my heart dropped, because that means you’re leaving today.”
Instead, Kali continued to hear the bells for almost a month before she died, Lisa said, adding that in her final two weeks, Kali became incoherent.
On Nov. 3, 2006, Kali passed away at home, with her mother at her side. The hospital staff cautioned Lisa she might not have the chance to be there when Kali died because a lot of people don’t want to die in front of loved ones, but she was determined to be there.
“It was just a very unique experience because I couldn’t ever sleep because she was in our room and I was really scared she was going to die while I was asleep,” she said.
“The night that she actually passed away I was lying with her and I had the best sleep ever,” she said. “The nurse woke me up and said I think Kali just took her last breath. So I got up and I sat by her bed and my husband was there and she starts breathing again.
“So then you’re struggling for so long you just really want her to be at peace at this point … so I laid right beside her and then she just stopped breathing.”
In the more than five years that have passed since Kali passed away, the Boulerice family has been able to cope and move on with their lives as best they could.
“I don’t know what the word would be. We’ve managed is all I think you could say,” Lisa said. “No matter how much time passes, there’s still a hole and you can never replace it and you can never replace her. When we’re all together sometimes it’s hard because you’re much more aware that there’s a part of your family that’s not with you.”
She tried to start the grieving process early, before Kali died, but that did not work out as she had hoped.
“I believed that, because you knew she was dying, that I could grieve before and I’d be OK after,” she said. “But that’s not the case. You know, but you don’t really know. It’s like being pregnant, you don’t know how much you’re going to love the baby until it’s actually born.”
The first month or so things went well, Lisa said, because she knew Kali was no longer in pain. However, after that it became harder because she started to want to give anything to have Kali back.
“I think that when someone you love is dying you want them to not suffer out of love for them, so you want them to pass away without all that suffering,” she said. “But then your mind has a way of working and you just want them back and you forget how much pain they’re in and selfishly you just want them back.”
The grieving process, as well as the entire experience, was even more challenging because the Boulerices also had two other children – a son, Carson, who was five months old when Kali was diagnosed with the first tumour and a daughter, Hailey, who was 20 months older than Kali.
It’s been a challenge, she said, because it’s difficult to balance grieving for one child while continuing to mother two other children. It got to the point where she couldn’t pretend she was fine, but at the same time she needed her kids not to see her crying and know that she loves them as much as she loved Kali.
One thing Lisa and Cory did to help Hailey and Carson cope was involve them in the process. They were never prevented from learning what was happening, which Lisa said she thinks will make them not be afraid of death.
“I don’t regret any of that,” she said. “I think it was really good for them.”
It gave them the opportunity to learn about the natural process of dying, plus they will carry with them good memories of their sister.
To parents who may be going through a similar trial with a sick child, she said there’s not much she can offer by way of advice.
“Even now, I don’t know what to say to parents only because it depends on what mood the parents are in,” she said. “It honestly does, because somebody could say something to me today and the same thing the next day and I would take it totally different.”
However, to people who try to offer suggestions to grieving parents, she does have some concrete advice.
“Unless you’ve experienced it, you have no idea at all what they’re going through,” she said, adding what they really need is support without any expectation of reciprocation.
She had many people call her, but she never called them back. They kept calling, however, because they understood what she needed most.
“I didn’t want to talk, but I needed to know that they were thinking of her or us,” she said.
Perhaps Lisa’s greatest sorrow about losing Kali is not for what she has lost, but for what her daughter will never become, she said. Kali would have been 10 this year, and Lisa will never know what Kali would have been like, nor will she see her graduate.
However, since Kali’s death, Cory and Lisa have had another son, Ryer. She said Ryer looks and acts like Kali at times, and people have remarked how similar they look.
“When he was a baby, my husband and I would whisper ‘What is she telling you?’ to him,” she said. “I think it’s neat that he holds some of her traits.”