“Those are her best days, when she gets to give to other people”

Livia Coles-Frank and mom Gayle Frank staying positive at the B.C. Children's Hospital while the nine-year-old battles a rare cancer.

Image Credit: Facebook

February 28, 2014 - 8:30 AM

NINE-YEAR-OLD GIRL BATTLES RARE CANCER

KAMLOOPS — Livia Coles-Frank's happy, creative childhood and love of animals is threatened by a rare form of muscle cancer in her head and 54 weeks of chemotherapy and radiation treatments.

The Grade 4 Beattie School of the Arts student and Tk'emlups te Secwepemc band member was admitted to hospital the last week of January with a prediagnosis of cancer after more than two months of breathing problems and losing almost a pound a week.

“After numerous visits to her family doctor in which her health was dismissed, an emergency doctor finally took her health seriously and referred her to a pediatrician,” mom Gayle Frank says. “It was from this point that things moved very quickly.”

Doctors found a large tumour in her head, later diagnosed as rhabdomyosarcoma that obstructs her breathing, especially when she sleeps. She had a tracheostomy (a breathing tube is inserted into a surgically created hole in the windpipe through the front of the neck), which will remain in place as long as the tumour is obstructing her breathing. She will remain in the Intensive Care Unit until the trach is removed.

A feeding tube will stay in throughout the treatment to make sure she is getting enough calories and nutrition. Liv started week four of chemotherapy treatment this week.

“We are hopeful Liv will have free days or weeks where she will be able to travel home for a bit,” Frank says. “Understandably, this won't be for a bit.”

Frank has been at the B.C. Children's Hospital in Vancouver with Liv since she was first admitted over a month ago and dad Todd Coles was there almost the whole time as well, often spending the night at the hospital. While a lot of family members have visited the hospital, both daughter and mom haven't seen much of Liv's older brothers Quinton, 15, and Jeremy, 13, in the past month.

“Life has definitely changed for our entire family, I barely get to see my two older children and Livia finds this change the hardest,” Frank says, adding she is trying to find ways “to create a little bit more normalcy in our lives.”

GOING FOR THE CURE

Frank says she tries to be strong for her daughter but also wants to make sure she understands she is sick, will lose her hair and that she is where she needs to be to get better.

“She doesn't have a grown up fear of cancer. In that way her innocence is helpful,” Frank says. “She still cries everyday, mostly because she is missing family or because of the... bloodwork she has to have.”

Frank says staying positive for Livia has been important, but it's not always easy.

“We find that we live day by day, hour by hour and sometimes even by the minute,” she says. “I go back to my room at night and have a good cry because I can't do that here.”

To help Livia, who will most likely spend her 10th birthday in hospital this July, feel more comfortable, her hospital room is plastered with artwork and family portraits. She gets to wear her own clothes and also has her own bedding. She even has a bunch of Lego in her room.

When not busy with daily testing, Livia makes 'thinking of you' cards for family and friends and the nurses have given her baking supplies to make cookies and muffins. She also uses Facetime to talk to family and friends and has a teacher helping with school so she doesn't fall too far behind.

“She loves going for walks, but she doesn't get to go outside all too often. She's pretty good at keeping herself busy.... She's made a lot of cards, with thank you and smileys, a whole slew (of cards) for family—aunties, uncles and cousins,” Frank says. “Those are her best days, when she gets to give to other people.”

Frank says doctors are 'going for the cure' which means extensive treatment right now. Talk of surgery is down the road. So far the cancer seems to be localized and at week six she will be re-evaluated. Frank has already used up her sick and vacation days but her work place, Aboriginal Mentoring and Training Association, has been very understanding and helpful. They have even set up a fundraising page to help the family financially.

Many other #TeamLiv fundraisers are also taking place in Kamloops and Lillooet, including a dance and family fair this weekend at Moccasin Square Gardens at the KIB old gym from 3:30-9 p.m. There will be magic, games, crafts, a cake walk, food and entertainment. Entrance is by a minimum $2 donation.

A Facebook page has also been set up to keep family and friends up to date with Livia's treatments.