‘The spirit isn’t there’: Broken-hearted Lower Sackville parents going through the motions of Christmas

LOWER SACKVILLE, N.S. — Losing their bright butterfly Sophia, the Christmas spirit is harder to come by in this Lower Sackville home this year.

“Last year, we had about 10 blow-ups out there and now we don’t even have lights up. We got our tree last week,” said Ian MacInnis during an interview Wednesday in the family’s living room. 

Like most people, they usually love Christmas and look forward to it all year, Ian said.

“We’re not looking forward to it,” said Amy. “We have to put on a smile and we’re going through the motions, but the spirit isn’t there. We’re really trying for the kids.”

Last year, thousands of Christmas cards poured in from all over the province (and all over the world) particularly after SaltWire published a story about how Sophia loved getting cards in the mail.  They leaned on their community hard back then and they still do.

At that time, doctors didn’t think Sophia would make it to Christmas with a rare and aggressive brain tumor (diffuse intrinsic pontine glioma). 

She died on May 6.

“Forever 10,” said her mom Amy MacInnis.

When asked about their hopes for Christmas this year, they said they hope their two other daughters find some joy.

“I don’t have a lot of hope that I’ll enjoy it very much, it’s just going to be so hard,” Ian said, fighting through his emotions. “I just hope they have a good Christmas.”

When they broke out the ornaments recently, the two girls were smiling. Amy said she hopes they can keep their smiles.

“I just hope they can continue to smile throughout Christmas because I don’t want them to feel the heartbreak that we’re feeling,” she said.

Sophia’s last days

Sophia was stubborn and defied doctors’ predictions at every turn.

They said in November she had weeks. They said after an MRI in April that she likely only had hours left, but she held on and fought for 10 days longer.

“She was so strong and she was always so headstrong, always,” Amy said. “Sophia didn’t listen to anybody, ever.”

Her parents told Sophia she had a tumor but didn’t tell her about the timelines or even that she had cancer because they thought she’d be so scared of the word that she’d give up.

“For her to make it through January, February, March to May, we’re very thankful that we did get the extra time,” said Amy.

Sophia had a lot of restless energy in her last few days, said Ian.

“I truly believe she knew what was coming, she was never that restless throughout her illness,” he said.

She was having breathing problems and she was on oxygen at home. She got a bad fever that day — the tumor was on the part of the brain that controls body temperature.

“She looked at me and she said ‘Mom, I’m ready to give up now,’ and that was about two hours before she died,” recalled Amy.

They laid down with her in her bed that they had moved to the dining room to make things easier. The bed is still there.

“We were with her, we were just watching TV, and I just said ‘I love you’ and she said ‘I love you too’ and that was the last thing she ever said,” Amy said, going through a box of Kleenex in one sitting while telling the story.

Sophia’s ashes are now in a butterfly urn on the mantle — butterflies were always her favourite. Her five-year-old sister recently placed a knit cap on it because she didn’t want her to be cold.

‘When Sophia’s fight ended, ours didn’t’

In March, in their desperation, the family searched for anything that might make a difference. Nothing was available in Canada, but they found an experimental medication trial in New York state. Family, friends and the community fundraised over $20,000 for the trip.

Amy said they were frustrated that they had to find out all this information about the trials on their own and that Sophia couldn’t try anything experimental at home.

“It’s not fair that Sophia couldn’t try anything when kids all over the world are able to try something,” Amy said. 

Amy said the common treatment and outcomes for diffuse intrinsic pontine glioma haven’t changed much in 60 years and this kind of cancer receives only a miniscule amount of research funding from the government.

The treatment in New York helped Sophia, but her tumor “just spiderwebbed,” Amy said.

After Sophia died in May, they decided they wanted to help other families so they could benefit from their experience while also advocating to bring experimental trials to Canada.

Amy said she’s in the process of legally registering the Sophia Smiles Pediatric Cancer Foundation as a charity. They want it to be a support for other families and there will be bigger fundraising events when the charity is registered. The donations will help families travel for treatments and medical expenses.

“When Sophia’s fight ended, ours didn’t,” Amy said.

A new tattoo

Amy said it helps to keep busy with the foundation and she recently made Sophia Smiles Christmas ornaments to sell as a fundraiser.

It helps “to channel my pain and my grief into, OK, well, I don’t want someone else to go through this,” she said. “It makes me feel good to know we’re at least trying.”

Amy is sporting a fresh tattoo on her left arm, a collage of Sophia’s favourite things: the Disney character Stitch, a sunflower and, of course, butterflies. There’s also a replica of a note Amy came across after Sophia died.

It says: “I love my Mon.”

“It actually says Mon (not Mom),” said Ian, laughing with tears in his eyes. “She was a pretty bad speller.”