'We don’t have options here': Ottawa family seeks out-of-country cancer treatment for daughter
An Ottawa family is facing a daunting challenge in their search for a treatment for their nine-year-old daughter with cancer.
In order for Lara Reis to receive an experimental treatment to help fight an aggressive and inoperable brain tumour, the family says they must travel outside of Canada, which comes with a huge financial burden.
Family time is fun time for Lara. On a warm sunny Wednesday, she, along with her younger brother Lucas and cousin Clarice, who is visiting from France, climb onto the swings in her backyard, to catch a breeze and some smiles too.
Watching Lara play brings joy to her parents Christiane Wiefels Reis and Roberto Reis.
"She has always been the laughing girl even when she was a baby," says Roberto. "Lara is nothing short of a blessing."
Christiane says these days; she is taking many photos and enjoying every single minute of each day. Because behind those smiles is fear and pain. Back in May, Lara’s vision changed.
"Lara had a squinty eye and she looked at me and I saw her eye moving inward and I got scared," says Christiane, adding she immediately emailed their family doctor and brought her to an optometrist.
"The optometrist did a full assessment and at the end he told me it was probably a lazy eye but I got the impression it was getting worse and I spoke to some colleagues that are physicians and they told me to take her to CHEO."
An MRI revealed a worse case scenario. Lara was diagnosed with an aggressive and inoperable brain-stem tumour known as Diffuse Intrinsic Pontine Glioma (D.I.P.G.).
"Make memories; you know we heard that so many times from our doctors," says Roberto. "We have to take this time we have with Lara because the prognosis is so poor. Normally, the kids live from nine months to a year after the diagnosis."
Roberto and Christiane commend the immediate and exceptional care the team at CHEO provided to Lara, who has undergone six weeks of radiotherapy to stall the tumour’s growth.
"She handled that bravely, she did very well during the treatment," says Christiane. "She had no major symptoms."
Lara says while she’s at CHEO, the people are nice and make her laugh .
"They play games with me and talk to me," she says, adding that UNO is one of her favourite games. "And I win every time."
The family say D.I.P.G. treatment in Canada is limited and they must turn to the United States for more options.
"There are studies in Canada but normally they are not intervention studies, they are more observational studies," says Roberto. "All the new trials that could provide some hope for a better quality of life or an extension of life, they don’t talk about cure, they are only available in the United States.
"Our provincial plan does not cover this, so we have to pay out of our pockets and we heard studies can cost from $150,000 to $1,000,000."
An expense Christiane and Roberto cannot afford to pay, but also cannot afford to dismiss.
"Canada has such great resources, it’s hard to understand why we don’t have one centre here being part of this study," says Roberto. "We have studied a lot about the possible trials and the one that we decided to pursue is in New York. We’re still waiting for an opening in that trial and we heard that maybe we could enrol her in September."
A GoFundMe campaign has been started in order to help raise funds for the multiple other expenses that come with out-of-country treatment such as travel, accommodations, and time away from work.
Until the day arrives where Lara can seek new treatment, making memories is what matters most for her parents and brother.
"We have Make A Wish Foundation helping us, we were granted to travel really soon," says Christiane. "Next week we’re going to Disney World. It was her dream, we have never been to Orlando before. There is so many parks, so many things she would like to do."
For Lara, speaking about her vacation next week, brings a smile to her face and is excited for her breakfast with a princess.
"We’re going to the Magic Kingdom," says Lara. "And they told us that we are going to have ice cream for breakfast."
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