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Editor’s note: Odds are you know someone with cancer. Someone in treatment. A survivor or someone who died from it. Since statistics say one out of two Canadians are expected to be diagnosed with cancer in their lifetime, most Nova Scotians are touched by the disease. We’re sharing personal interviews of three people who are dealing with cancer at different stages of life: previous weeks we talked to a senior, a woman who was diagnosed at 46, and this week a child. Finally, Drew Bethune, head of cancer care in the province, will answer questions about treatment, new technology, prevention and how a major project is going to change care for cancer patients in Nova Scotia.
A house decorated and ready for hosting a girl’s 10th birthday party sat empty and quiet — all because of a life-changing phone call.
On the morning of July 23, 2015, nine-year-old Grace Disney had no idea hospitals and tests were in her immediate future. She was simply excited for her party that afternoon and was looking forward to turning 10 in two days. But for the past month she was feeling sick. She was throwing up about once a week and her family couldn’t figure out why. She looked small, and she had bruises on her shins that wouldn’t fade.
“I certainly wasn’t thinking sickness, I was thinking allergies and things like that,” said her mother Nicola Disney. “When you look back at it, you can see that there was something wrong.”
Earlier that month, Grace had been to the family doctor and blood work was done. When their family doctor saw the results — the dramatically low red blood cell count — she called the IWK Health Centre for a consultation. They said to redo the bloodwork to confirm. So on July 22, a day before the party, Grace went in for more blood tests.
The next morning, Grace fit in a swim before the party. But at the same time, Nicola got a call from the IWK: They were told to go to the ER straight away and pack an overnight bag just in case. They would be told more after they arrived.
“We were swimming I remember and (my mom) came over and said ‘We have to go right now’ and I was like, ‘Wait, I just want to stay swimming,’ ” said Grace. “And I was like, ‘Oh we just have to go get ready for the party’ but really I’m going to the hospital.”
This is a memory that Nicola has a hard time discussing. It’s a parent’s worst fear come to life, unfolding on a day that was supposed to be filled with laughter.
Cancer later in life is not unexpected, Nicola said. Cancer in a child is just wrong, she added.
“Children shouldn’t have to go through this, parents shouldn’t have to hear this, you shouldn’t have to explain this to young children.”
Instead of a party, Nicola and her husband Bruce dropped everything, sent their two boys (Charlie and Ben) to stay with their aunt and quickly texted all the party guests to say it wouldn’t be happening.
Arsenic and stuffed animals
“That was the hardest part for Grace initially because she couldn’t understand why we were leaving a decorated house.
“Really it’s hard to tell your child what’s going on when you don’t know what’s going on.”
When they got to the ER, doctors took them up to the sixth floor. What they told them is something Nicola said she doesn’t like to talk about.
For this interview in March, Nicola sat in her living room with her three children all piled on the sofa next to her. Through body language alone it’s obvious this is a close family.
When the story gets to when the doctors told Nicola and Bruce they believed Grace had leukemia, she puts a hand on her heart as tears run down her face. Grace, with her long blond hair in a scrunchy on top of her head, courageously picks up the telling.
“I didn’t understand it, I didn’t know what was going on. They told me it was like it was these bad cells that come into my bloodstream and they were hurting all the other ones,” Grace said. “They said they were going to give me some medicine and I was going to be there for a little while. I didn’t know that’s what leukemia meant, that that was a cancer, I just knew I had something.”
One of the doctors said Grace could truly thank her by becoming a doctor when she grows up.
The next day (July 24) she had several procedures and tests including a bone marrow test. She was diagnosed with acute promyelocytic leukemia (APL) and started treatment on July 25, her 10th birthday.
Much of the next three weeks that Grace was in the hospital was a blur to Nicola. She calls it a blessing that she doesn’t remember everything.
“I remember Grace being very confused and we decided we were going to be very honest with everything and it would be better to put it all out in the open than having to whisper in corners. At first, we did have to whisper because we didn’t know what was going on and she’d have questions and we didn’t have the answers,” said Nicola.
The family received tidal waves of support from family, friends, co-workers and their community. Grace’s friends visited and her brothers ate a meal with her nearly every day.
Nicola said distraction was a key technique.
“When we were there, Daddy decked her room out. He brought everything: her lamp, comforters, stuffed animals. And people were very generous with gifts with things to keep her busy.”
Grace’s treatment involved a form of arsenic sent via IV into her bloodstream for two hours a day and then a high-density form of vitamin A called ATRA used to treat patients with APL. She also took vitamin pills to compensate for the side effects of arsenic.
Early on, Grace discovered she was allergic to arsenic, which required more pills to quell her reaction. They only found one cancer cell, but Grace had many leukemia blasts (immature white blood cells). The arsenic treatment worked fast and was successful: Grace was cancer free in 28 days.
Ringing the cancer-free bell
But the treatment was far from over. To make sure the cancer didn’t come back, Grace took treatments over the next six months as an outpatient. She kept up her school work as much as she could. Nicola, a primary teacher, homeschooled Grace.
“Mentally and emotionally I was OK,” said Grace. “I had a lot of support and at that point when I was going to the clinic, I knew what was going on and I didn’t feel unsafe. I felt I was being cared for and I was being treated and it was working.”
Then the big day finally came: nine months after her birthday (the day she received her diagnosis) Grace finished her last treatment. As per tradition, she rang the bell with her doctors, other patients and her family cheering her on.
The Disneys were grateful to everyone. One of the doctors said Grace could truly thank her by becoming a doctor when she grows up.
“At that point in time, I was just trying to focus on the present point in my life not exactly what I would be when I was older,” said Grace. “But when she told me that I was like ‘Well, yeah, I don’t want anyone else to feel the way I have so I want to help people. I want to do what you did for me.’”
She rang the bell on Good Friday three years ago, and Grace said she’s still determined to become a doctor one day.
Until then, she’s doing what she can to help others. Grace has planned events for IWK patients, and she and her older brother Charlie are members of the IWK Youth Advisory Council.
“They started to paint the hospital this really weird colour, it was grey or something like that, and we said, ‘That’s super unfriendly.’ ”
Grace is emphatic her cancer story isn’t a sad one; it’s one of perseverance. Grace was determined to share her story in the hopes her experience and advice could lighten the load for other families.
“I’d like to say that if you find a point that’s really challenging for you right now in your journey, try to think that there’s going to be a good time after that. Every time you have a bad time there’s going to be a better time to make up for that,” she said.
“Once you’re done, it’s such a relief and it’s going to be so much better and you just have to keep moving, pushing forward. Do the obstacles and you’ll make it.”