A Trail grandmother is spreading awareness and raising funds for pediatric cancer research to support her granddaughter’s mission.
Lynn Gould has coordinated team NRG, a collection of about 25 community members who are lacing up for the Canadian Cancer Society’s upcoming Daffodil Dash event in honour of her granddaughter Natasha Rose Gould’s fight against a rare form of brain cancer.
“Her brother (Liam) describes her well; he said, she just has this spark,” said Lynn.
The Sunningdale resident couldn’t be prouder of Natasha, who is a beam of light even through difficult therapy and news.
The 12-year-old Calgary pre-teen’s life turned sideways about a year ago when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable and incurable cancerous tumor.
On May 1, 2015, Natasha experienced a slight weakness in her left arm and leg and noticed her vision was off before a trip to the Children’s Hospital for an MRI revealed the rare tumour.
DIPG affects the pons portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing. Unfortunately, these symptoms worsen because the tumor is rapidly growing.
“There is no cure, very few people live past a year,” explained Lynn. “I don’t think there is a survivor anywhere beyond 13 months, but we’re praying.”
The family is keeping faith that Natasha will be the one who will beat the odds.
Natasha’s MRI this month showed that portions of her tumour are dying, and the family is now waiting for a radiation oncologist to evaluate the measurements and provide more detail. The young girl just completed her second bout of radiation therapy, the only proven beneficial treatment that can improve how the child feels and functions.
Other options are limited but could include seeking out other medical methods through a new wave medical trial, which is a costly route to take. The family is raising funds through an online campaign called prayfornatasha.ca, where nearly $63,000 in contributions have been made toward the $100,000 goal set to help alleviate costs.
This site and “Help Natasha Fight DIPG” on Facebook is also keeping those interested up to date on her treatment and the trials and tribulations that accompany her medical journey.
Through her blog, Natasha shares honest insight into life for a girl with cancer. She talks about her fear of radiation therapy and putting on the dreaded mask, and she jokes about having an “appetite of a full grown male water buffalo” while taking Dexamethasone (steroid) to keep down the swelling in her brain. Through all the ups and downs, she conveys her sincere love for her family and friends, some whom she just met since diagnosis.
“I have to fight, not for my sake, but for my parents’ sake,” she notes in a post about a struggle to find bravery. “Trust me, as bad as being a kid with cancer sounds, being a parent whose kid has cancer is 10 times worse.”
Her story is further conveyed through her YouTube channel, which highlights some positive experiences this past year like joining the Calgary STARS Gymnastics and Cheers team as an honorary member at a cheerleading competition, but also provides an honest look at what she has endured through radiation footage.
Natasha has also travelled to speak at events like CureFest, held outside of the White House in Washington, D.C., to educate the public on pediatric cancer through her story.
“She’s held the bar up to here, so I thought I’ve got to do something in my small way,” said Lynn.
The Canadian Cancer Society committee volunteer is like an encyclopedia when it comes to cancer and what treatments are out there. She has Natasha’s television appearances saved on her TV and photos as screen savers on her computer.
Her granddaughter’s mission set her in motion. She got in touch with the Canadian Cancer Society office in Trail and was pleased that her Daffodil Dash team’s vision for raising money specifically for pediatric cancer research was supported.
It didn’t take long for local schools to get on board too, with fundraising events to help the society raise additional funds for pediatric cancer research this month.
The NRG – “Go For Gold” team has already raised nearly $4,000 and will likely surpass its goal of $5,000 but is not putting a cap on its fundraising efforts. Lynn invites community members to join the team or support them online or by getting in contact with her directly at 250-368-8375 or via email at firstname.lastname@example.org.
“I think she’s so special and if she has been selected to do this then we want to help her accomplish her goal and her mission to spread awareness,” she said.
Lynn picked the Trail area as a place to raise her three now adult children, including Natasha’s dad, Bill, who now lives with his family (wife Saskia, son Liam and daughter Natasha) in Calgary but still is deeply rooted in the local area.
The family has learned first hand that pediatric cancer is by no means rare, and more research is needed.
“You see the children on TV at BC Children’s Hospital and the Sedin (family is) visiting and the kids are all smiling, and they have no hair, but they’re happy,” Lynn added. “And you think, ‘Oh isn’t that cute.’ But when you live it, it’s not cute.”
Trail’s first Daffodil Dash, which is replacing the Relay for Life event that had 15 successful years in Trail, is focused on honouring those who’ve passed and celebrating those who have survived cancer.
The family-friendly event is set for April 24 at Gyro Park, with registration opening at 8 a.m. before the dash takes off at 9 a.m. The dash is comprised of a 3 km walk or 5 and 10 km run and also includes a 100-meter dash for little ones.
All money raised will be donated to the Canadian Cancer Society, with a special category of pediatric cancer research set for NRG’s efforts. Participants are asked to raise a minimum of $150 for the cancer-fighting cause, and those successful in that mission receive a swag bag filled with local goodies.
Participants can sign up as a team or individually at cancer.ca/daffodildash. Registration fees are $15 for youth and $30 for adults and up to $20 for youth and $40 for adults on event day. Kids 10 and under are free.
Runners and walkers are encouraged to dress up, as there will be prizes for wackiest, craziest and “yellow-est” costumes.
To volunteer for the dash, contact Allison McCarthy at 250-364-0403 or via email at email@example.com
To support team NRG (or any others), visit www.cancer.ca/daffodildash and select Trail and search