Family of 5-year-old girl battling cancer planning amazing summer trip

Jun 28 2019, 5:39 pm

“When time is Short, make it Sweet.”

That’s from a blog post titled “50 Nights In A Tent” reads, which is dedicated to a little girl in Alberta named Arya who is battling cancer.

The post also details her family’s plan to take the five-year-old on a road trip across central Canada to see relatives she hasn’t yet met.

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According to a GoFundMe page that was started to raise $25,000 for treatment, doctors found that the little girl had aggressive brain tumour after she turned three years old, “a diagnosis that changed our lives forever,” wrote fundraiser coordinator, Petra Lynne.

There is no known cure for her cancer and the family is now pursuing clinical trials and novel immunotherapy treatments in an attempt to maintain a good quality of life for Arya and to help find a cure, according to the blog post.

“While Arya’s initial treatment here at the Alberta Children’s Hospital in Canada kept her cancer stable for 11 months, she then relapsed with metastatic tumours in her brain and spine. Since June 2018, Arya has had treatment for a further four tumours,” the GoFundMe page reads.

“We are incredibly fortunate that Arya’s quality of life has been fantastic throughout the past year (apart from the regular, sometimes daily, appointments and treatments, which she attends with a smile and good spirit!)”

The post notes that in the past two years, Arya has undergone five surgeries, 14 MRI’s, three lumbar punctures, and 63 rounds of radiation to the brain and spine.

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Arya/GoFundMe

It said treatment options have now run out in Canada for Arya’s specific type of tumour — but the little girl qualifies for two clinical trials south of the border: “a CAR-T cell trial in Seattle, and a T-cell vaccine trial in Washington, DC. Unfortunately, the CAR-T cell trial is currently waitlisted for children of Arya’s age, and for international patients, so we are pursuing the T-cell vaccine trial first.”

“We have been in discussion with both trial investigators and have been told that participating in one will not exclude Arya from the other if/when she relapses again,” adding it’s likely relapse will happen sometime in the next six months based on past recurrences.

However, these trials are not funded by Canadian Health Care, and for Arya to continue treatment, the GoFundMe states that self-funding is needed — so now the family is seeking financial support to cover medical costs, airfare, accommodations, and transportation for Arya’s time at Children’s National Hospital.

Now the clock is ticking — Arya’s team is anticipating further tumour growth by Christmas time, “the vaccine will also take approximately eight weeks to create once Arya had completed her two blood draws. The trial doctor, therefore, advised acting as quickly as possible so that she will hopefully still be stable when she receives her first two infusions.”

The family blogged that they feel fortunate that the little girl has been, “happy, energetic, and full of life” during the time that she has been fighting her cancer.

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Arya/GoFundMe

“Unfortunately, we are aware that our time with her may be limited,” the blog reads, “we are therefore aiming to have as much fun, adventures, and memory making as possible in the time we have left!”

The blog explains that, to the family, “nature heals” and camping will provide an opportunity for them to feel like a “normal family: a family that can go for extended periods of time without treatments, appointments, hospital visits, or those ever-lingering thoughts about ‘cancer.'”

A few bucket list items on the blog for Arya: To go on a big zip line, meet an elephant, and swim under a waterfall.

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Arya/GoFundMe

“For those of you that do get out camping, please consider helping us to spread the word about Arya’s Journey by including the hashtag #UnderTheStarsForArya with your social media posts about camping!” the family wrote on the blog.

Donations to Arya can be made at her GoFundMe page here.

The family’s blog also left a message to readers, urging them to take a camping trip sometime this summer as well, stating “get out Under The Stars and Enjoy Life!”

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