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Olympian’s baby with rare cancer in remission

There's been a "huge win" for the baby daughter of a local family who's battling a rare cancer.

CANMORE – For Frankie Butler’s first birthday on March 23, colourful balloons floated around her room and loved ones brought wonderful presents and enthusiastically sang "happy birthday" for the special occasion.

Most of the singers celebrating the little girl's big day had been strangers to the Butlers last year, but the front-line health workers at Alberta Children’s Hospital in Calgary have become like close relatives over the past six months during the Canmore family’s biggest fight.

One year ago, Frankie’s birth at Canmore General Hospital came with lots of joy for the young family of Nordic ski racers, but medical facilities have become an undesirable yet necessary front for the small child fighting against a rare cancer.

Frankie started chemotherapy last November after being diagnosed with Atypical Teratoid Rhabdoid Tumour (ATRT), an uncommon and aggressive form of cancer, which is difficult to cure and its outcome remains poor.

“The first time we got a diagnosis in October, we didn’t know if we’d make it to her first birthday,” said Amanda Butler, Frankie’s mother, a two-time cross-country Olympian at the 2006 and 2014 Winter Games.

But cooped up in hospital or not, Frankie’s miraculous perseverance when facing the odds deserved some balloons and celebrating.

“Most people are like, ‘I’m so sorry you had to spend her first birthday in the hospital,' but to honest, we had a great day,” Amanda said.

The mama bear sees a lot of feistiness and fight in Frankie, but also her playful side.

"She’s funny and not easy to get to giggle or smile, but if I do something ridiculously silly I can get a smile or giggle, but she has a different sense of humour, I think. It's little bit drier," Amanda said with a laugh.

Frankie’s party was a rare time in her young life where she experienced a little bit of normalcy.

For many months, Amanda and Chris, Frankie’s father, didn’t have much to celebrate. Doctors performed emergency brain surgery in October on the then seven-month-old baby, removing a six centimetre long tumour from Frankie's cerebellum, located on the lower back of the brain.

It was the start of a hectic schedule, living out of the Ronald McDonald House, new apartments, and the hospital for Frankie’s treatment.

The aggressive cancer hit hard and fast, and left the Butlers broken during the first two months of treatment.

“We didn’t want to talk to people and we just didn’t want to be around people,” said Amanda.

The surgeons removed about 85 per cent of the tumour last October and what followed for baby Frankie were high doses of chemotherapy. Each round of chemotherapy usually is around a month long and leaves Frankie exhausted and nauseated.

“Frankie’s on the most potent chemotherapy there is; it’s just really hard on the system and she needs to be constantly moderated,” said Amanda.

Due to the relentless cancer, a second brain surgery was scheduled for earlier this year.

But something happened that nobody expected in early February. An MRI scan revealed the tumour on Frankie's brain couldn’t be detected, also known as a remission, which can be temporary or permanent.

The news was a "huge win" and means better odds that Frankie can defeat the grim outcome.

She even started putting on weight, which she hadn't been able to do since October.

"Anytime we see her develop we are so stoked," said Amanda. "She had gone months with the same weight and finally she's gaining weight, and seeing her want to eat some food, it's just good to see some development and see her progress.

“Although this cancer is extremely rare, there was another family in the hospital and their kid had the same cancer and they did not get the same news we did, so we know how fortunate we are and to have made this far."

Frankie's fight is not over.

She recently started her sixth round of a heavy dosage of chemotherapy and doctors will reassess afterward.

Although, the process is still ongoing and uncertain, when the Butlers can celebrate the big victories, even if it's just for one day, it's worth it.

“[The doctors and nurses have] become her family, so her birthday was really special still; a perfect day,” said Amanda. “The hospital just spoiled us rotten and came and they all sang took pictures. It was really special.”

The fight for Frankie back home

When Frankie's horrific diagnosis was announced, friends and family acted fast, and the community stepped up.

Vanessa Joosten, a family friend, wanted to give Amanda and Chris the opportunity to be with their daughter as much as possible and not have to worry about housing and meals.

The Fight For Frankie initiative was born and is being carried onward by Joosten and other close friends.

"There’s not a lot you can do to help them besides raise money and provide meals and that sort of thing," said Joosten. 

"It gives you a sense of community and power toward fighting for Frankie."

In it, there's a meal delivery program, help to rent out an apartment near the Calgary hospital during the first few months, and a GoFundMe online fundraising account that's raised nearly $95,000 for the family.

The Fight For Frankie design of a unicorn skiing has been printed on buffs, T-shirts and fanny packs, which have been turning up on supporters from Main Street Canmore to those wearing them while knee-deep in snow in the wild backcountry.

The community 's response and unequivocal rallying behind the Butlers has been "unreal".

"It's almost overwhelming in a sense of how proud you are to be such a phenomenal community," said Joosten.

All the love from the hearts of the Bow Valley and beyond hasn't gone unnoticed by the Butlers, who've been blown away by the support and are forever grateful.

"It’s unbelievable,” said Amanda. “We’re in a really tough situation where we don’t know the future of our child and it keeps us up at night a lot and the road is hard, but everyday we’re just so grateful for the community and friends and family that are supporting us.

“It’s beautiful that during this tough time we have so much to be grateful for and we’re so thankful for everyone who’s helped us and its given us more time with our daughter and that’s what’s most important right now."

Jordan Small

About the Author: Jordan Small

Jordan Small joined the Outlook in 2014 and covers the vast world of sports in the Bow Valley. A Barrie, Ont. native, he also wrote for RMO's Mountain Guide section and the MD of Bighorn beat.
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