Meet Heidi

Meet Heidi

Dreaming of Disney Adventures!

Heidi lives up in Gnadenthal, a 15-minute drive South-East of Winkler, with a family that knows how to love each other. Heidi, an 11-year-old, was born a twin, has a younger sister, as well another set of younger twin siblings.

To really know Heidi’s story, we have to look back to a few years ago.

When she was just eight years-old, Heidi was excelling at school and living a pretty normal life for an eight-year-old girl, until she started getting constant headaches. Her parents took her to an ophthalmologist for an eye exam where they got some frightening news—Heidi wasn’t able to see out of her left eye.

After having an MRI and biopsy done, Heidi found out that she had a rare form of brain cancer: a chiasmatic optic pathway glioma.

A clinical trial at CancerCare Manitoba opened up, and Heidi began taking chemotherapy treatment, since radiation and surgery were out of the question because of the location of the tumor.

Every other week for the next year, Heidi and her mom Rachel would make the almost two-hour-long trip from Gnadenthal to Winnipeg, for the life-saving chemotherapy treatments that Heidi desperately needed.

At first, the medicine was a success. Heidi’s tumor had shrunk by 25 per cent after the first three months.

“When she was first diagnosed she saw herself as different from her classmates because of her cancer, but after her diagnoses was explained to her classmates, they showered her with love and support, and it made a big difference for Heidi. ”

After about one year of taking the medicine though, Heidi started experiencing bad headaches again and was losing vision in her eye. Her team of doctors pulled her off the medicine she was using and changed her treatment protocol before things got any worse.

It turned out to be helpful, because Heidi’s tumor began to shrink back down, eventually to roughly the same size as it was before it had grown back.

“The goal is to ween her off of the meds one day, because she can’t be on them forever,” says Heidi’s mom Rachel.

Heidi currently goes in for treatments once a month and got news from her doctor at her last visit that he is looking into a new drug in the U.S. to see if they would be able to try it for her.

Coping with cancer and the challenges it can bring has been tough for Heidi, especially when it comes to school. When she was first diagnosed she saw herself as different from her classmates because of her cancer, but after her diagnoses was explained to her classmates, they showered her with love and support, and it made a big difference for Heidi.

With regular trips to the hospital, it has almost become a second home for Heidi, and there are many people there she considers part of her family.

It’s that new family that began asking Heidi and Rachel if they had reached out to The Dream Factory. “It was such a long journey, we didn’t feel like there was any rush,” said Rachel, and not long after she finally reached out to The Dream Factory.

Heidi and her family met with The Dream Factory in December of 2018, and the “Dream Ideas” have been flowing ever since!

Heidi’s dream is still up in the air—Paris was her initial dream, a dream she had since she was in the third grade, but that would be a tough trip for such a large family, especially one who hasn’t travelled very much.

More recently, Disney World has quickly come to the front of her mind as a possible Dream Trip. Heidi and her family would stay at Give Kids The World – an incredible village designed specifically for kids battling illnesses who are visiting Florida. It’s an experience that is truly unforgettable for families that visit.

Pictured: The incredible village at Give Kids The World (image via www.gktw.org)

Heidi’s family has stood by her every step of the way, but they also feel the struggle. Heidi’s twin sister, “struggles the most on treatment days, going to the bus alone, going to school alone,” says Rachel.

It affects the younger siblings too. With five hours at the clinic and the long drive to the city and back, treatment days can take up a whole day, and that’s time the parents don’t get to spend with the kids.

The younger set of twins have a hard time seeing mom taking Heidi into the big city and not getting to go along with them, and her twin sister would do anything to be able to go with Heidi and support her.

But, as Heidi says, “I’d rather go to school with you instead.” She’d prefer the chance to go to school over being poked with needles, but Heidi does a great job at keeping up with her schooling by taking along work the teachers have assigned.

These days the greatest struggle for Heidi is not having an end date for her treatment. But her prognosis is good, providing treatment can keep her tumour dormant. For now, Heidi and her family are spending time thinking about her upcoming Dream Trip. It’s an opportunity to spend some quality time together as family and – for just a few days – leave the world of tests and treatments behind. For Heidi and her siblings, they can look forward to a whole week of focusing on what’s really important: just being kids.

Thanks to Andrew Lysack from Red River College’s Creative Communications Program for his help with this story – it is truly appreciated.