“This weekend is kind of the first weekend we have downtime to process everything. We’ve holding up fairly good. It’s still kind of a shock we’re sitting in this situation. Everyone believes it can’t happen to them until it happens to you….we’re surviving on prayers and hopes right now,” said Cathie-Leigh Hogan, Emma Humphreys’ mom.
Since three-year-old Emma’s diagnosis of DIPG, a rare inoperable tumour, her and her parents David and Cathie spend five days a week in Edmonton for palliative radiation treatment. If Emma is feeling up for it, they come home on the weekends.
“We just let her live. And we let her enjoy the rest of her days to the best of our ability.”
David and Cathie adopted Emma when she was 15 months old. Soon after her diagnosis, it didn’t take long for the community to embrace what David and Cathie already knew about her: she’s a princess.
“She’s always been our Princess Em…it just caught on from there that she’s the Lakeland princess. And she lives true to that name every single day.”
Emma goes to her radiation treatments in her princess gowns given to her by the community. Her story has reached across the Lakeland and even spread around the world through social media.
“It’s phenomenal,” said David Humphreys. “Emma has followers in Germany, Scotland, the United States, all over the world.”
DIPG is the leading cause of death from pediatric brain tumors. Despite the vast medical advances within the last 40 years, there is still no effective treatment and no chance of survival for DIPG. Only 10 per cent of children with DIPG survive for two years following their diagnosis.
“That’s just not fair. It’s absolutely disgusting to me that in the world we live in, how we’ve come so far, that this gets researched last. That it gets the last of the research money.”
The family is always asking doctors about clinical trials for DIPG. They get turned down every time. Either it’s because Emma’s tumour is too far advanced, or it’s because they live in Canada, and the trials are overseas.
“There’s nothing worse than sitting beside a child and knowing that there’s nothing you can do. The only thing we can do is make her as comfortable as possible, and watch her die. And no parent should have to deal with that.”
This spurred the Humphreys family to fight DIPG for years to come.
On July 28, the Ride for Princess Emma fundraiser kicks off at Wal Mart in Cold Lake at 10:00 am. They will ride to Ardmore to the Community Hall for a day of activities and celebration. They hope to make the Ride for Princess Emma a yearly event to raise money for DIPG research.
“We hope in the future to provide the funding, that the researchers who are looking into DIPG, to provide them with whatever they need to provide another family in the future hope. So they don’t have to hear that there’s nothing we can do.”
The donations the Humphreys family has received so far have helped a lot. Cathie and David just bought the proper bed for Emma so she can sleep comfortably at night. But most of all, Cathie is grateful that during this stressful time, David doesn’t have to worry about work and financial constraints.
“That’s something we can never repay anybody for.”
“Thanks for loving us and caring for our girl as much as you have. There are no words to express the amount of gratitude and appreciation we have for our community,” said Cathie.
The family has received thousands of blankets and cards. They say they’re so grateful now to have many supportive people in their lives that they didn’t before.
“Emma’s miracle could very well be what she’s done so far. She’s brought a community together and shown it that this is the most amazing community that you could possibly live in. It takes a village to raise a child.
“This village is the most amazing village we could have ever asked for. Maybe Emma’s miracle is just bringing that little bit of hope together in a community when it was starting to look like it could fall apart.”
The full interview with the family can be seen here.