Defying the odds: Princess Emma’s tumour is stable months after being given weeks to live

In August 2018, three-year-old Princess Emma was diagnosed with a rare inoperable brain tumour called DIPG and given up to a month to live.

With limited time, her adoptive parents Cathie-Leigh and David Humphreys got married, rushed Emma’s Make a Wish trip to Disneyworld, and pulled her off most of her medications.

Emma was not doing well.

Cathie-Leigh says she had lost the ability to walk, was losing her communication skills, and had to be on oxygen almost 24/7.

The steroids weren’t helping either, as Cathie-Leigh suspected they were diminishing her quality of life and made her anxious and lethargic.

Despite some positive changes during their Disneyworld trip, no one foresaw what was coming with such a looming timeline.

Incredibly, over a year after her diagnosis and nearly eight months after she was pulled off her medications, Emma is alive and her tumour is stable.

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“The only thing we can say is we’re defying the odds every single day. We’ve been praying for a miracle since her diagnosis. They come in many different forms and ours is that she is still here. We don’t know what’s going to happen in the future. She’s still terminal. But we’ve beaten all the odds,” said Cathie-Leigh Humphreys.

“We’ve gone for two MRIs since, both for qualifications for a clinical trial to check on her tumour and how it’s doing. In order to be qualified for this clinical trial she has to be in a state of progression, we’d have to see some tumour growth before she received a second round of radiation. But as of right now there is no growth in her tumour.”

DIPG research has hardly advanced in the past forty years. Only 10 per cent of patients live two years after their original diagnosis.

It remains the bleakest of all pediatric cancers.

“The believe is there that if they can find a cure for DIPG they’ve found the cure for every cancer for every person and to know we get less than one per cent of that funding is very sad and a change does need to come with our government funding and where it’s going with the various cancers,” said Humphreys.

Emma’s story gained a lot of attention on social media last year, with donations and support pouring from across the globe, and following their Princess Emma Facebook account.

The princess aspect of Emma also came to light last year.

The doctors are baffled with her recovery, especially since Emma’s symptoms had progressed before. They suspect the symptoms are delayed.

“We have graduated from going to MRI’s every 3-4 months to we don’t have to go back until she starts showing significant signs of progression. They don’t have any explanation for us and we’re alright with that, as long as she keeps fighting the good fight.”

Emma has lost 50 pounds since last summer, is constantly moving and playing and communicating more.

In the fall, Emma will hop on a school bus and go to Kindergarten at Duclos School. When wintertime comes, a family Mexico trip is planned.

“We are still busy with some appointments with Emma, especially occupational physiotherapy and speech therapy and trying to get her up to a level she would be on with her peers in Kindergarten starting school.”

Instead of pursuing clinical trials, Emma’s parents will look at another round of radiation when her symptoms progress, but Cathie-Leigh is adamant that she will not be put on steroids again.

“I believe firmly that it was the steroids that almost took her last year. We had become so passive that she had given up and she still suffers from anxiety from it a little bit. But we’re working past that. Since she’s come off she’s made a remarkable recovery. If we didn’t tell anybody she had DIPG, not a single soul would know.”

“Throughout the year we still received so much support from the Lakeland. The amount of community spirit and community love that this community has shown for Miss Emma has been incredible and we can’t thank everybody enough for the love and the support,” said Cathie-Leigh Humphreys.

However, Cathie-Leigh revealed that their youngest daughter is also suffering from health issues and awaits a diagnosis.