Sisters Hunter and Halle Krawczyk share a hug. The Salmon Arm family is grateful that a drug geneticists have indicated might help nine-year-old Halle in her fight with a rare and vicious form of cancer has been made available through the BC Cancer Agency’s Compassionate Access Program. (Photo contributed)

Sisters Hunter and Halle Krawczyk share a hug. The Salmon Arm family is grateful that a drug geneticists have indicated might help nine-year-old Halle in her fight with a rare and vicious form of cancer has been made available through the BC Cancer Agency’s Compassionate Access Program. (Photo contributed)

Update: Drug for young Shuswap girl with cancer to be made available

Salmon Arm family is grateful for the drug geneticists believe could help, but hope it arrives soon

The BC Cancer Agency has granted nine-year-old Halle Krawczyk another tool in her fight with a rare and deadly form of the disease.

The young Salmon Arm girl has poorly differentiated chordoma, a form of cancer that hits only one in 20 million.

On Aug. 28, a year to the day Halle was first diagnosed with the medically incurable cancer, an MRI revealed the cancer was back and more virulent than before.

The news was a blow to her parents, Carolyn and Matt, who believed she was doing well and life would be getting back to some semblance of normality.

After treatment that included four rounds of six of the most gruelling chemotherapy agents, Halle was shown to have had a 95 per cent or better response in all the tumours in her body. An MRI in late June revealed that tumours in all places in her body were nearly non existent.

“This has been remarkable in itself as I don’t believe any case of the 12 identical cancers in the world a Boston doctor has treated has seen such significant response,” says Carolyn, pointing out she and Matt researched the disease thoroughly and also worked with a naturopath. “I thought we were doing so well.”

Related: Cancer returns to young Shuswap girl with a vengeance

But symptoms returned in the past couple of weeks and, on Aug. 28, an MRI indicated Halle’s tumours had grown.

“The metastasis to the lungs is also back and larger than previous as well, and the tumour is now infringing on her spinal cord and she is showing beginning signs of this tumour impeding her spinal cord,” said Carolyn. “It would appear that these tumours are growing at an unprecedented pace.”

With $60,000 in funding through POG (Personalized Onco Genomics), geneticists tested the tumour in search of other available treatments.

“Navolumab/Opdivo was the one drug that came back as a potential help,” says Carolyn, noting she and Matt were panicking about the speed with which the cancer was advancing.

Doctors at Children’s Hospital in Vancouver had indicated they were willing to treat Halle with the Navolumab/Opdivo and the sooner the better. But the process required for getting the drug hinged upon approval through the BC Cancer Agency’s Compassionate Access Program.

A spokesperson for the Provincial Health Authority, under whose mandate the program operates, says drug treatment choices must be evidence-based, and must be safe. But this alone does not guarantee CAP approval.

“The CAP policy includes what information must be taken into consideration by Tumour Groups, which approve the use of a drug from a safety and efficacy standpoint, as well as what must be considered by the systemic therapy leader, who has the responsibility to balance efficacy and financial and resource concerns,” reads a Sept. 11 email.

Related: Scientist wants risks of kids’ cancer drugs tested across the country

In an effort to speed up the approval process as quickly as possible, the worried couple established a petition pushing for agency approval on Sept. 5. It garnered 3,281 signatures within a few days.

An email to Halle’s oncologist granting approval through the Compassionate Access Program was received at 5:30 p.m. Friday, Sept. 7.

On Tuesday morning, Matt said Halle’s oncologists had indicated the youngster will receive her first treatment as soon as the drug arrives, and will receive the drug every two weeks in Vancouver, which Matt believes will require them to stay there for about two months at least.

Treatment has been approved for three months, after which Halle’s condition will be re-assessed. If treatment is showing promise and Halle continues to do well, the BC Cancer Agency may approve further treatment with the drug.

A young boy with the same cancer in California has reacted well to the drug, which gives Matt and Carolyn hope.

But, in the meantime, the couple will continue to research the disease and possible options for their “bright, vibrant, girl with a passion and exuberance for life…” and a goal of becoming a gymnast, a sport in which she has already shown an incredible talent.

“I think we’re in fight mode,” says Matt. “The fear is massive but you can’t let it overtake you.”

A GoFundMe account set up last year indicates $51,647 of a $100,000 goal has been reached, but those funds have since been exhausted and the family will need financial support for Halle’s latest battle.

To donate, go online to www.gofundme.com and enter Halle Krawczyk in the search link. Those who prefer to donate directly to Halle’s battle may do so by an email to Matt at mkrawzendako@hotmail.com.


@SalmonArm
barb.brouwer@saobserver.net

Like us on Facebook and follow us on Twitter

Just Posted

Armstrong Regional Co-op board members Brett Kirkpatrick (left) and Robbie Hoyte (right) flank Scott John of the Okanagan Screen Arts Society. The co-op donated $2,500 to the society for its Save the Towne Theatre campaign. (ARC photo)
North Okanagan-Shuswap cooperative contributes to Vernon theatre campaign

Armstrong Regional Co-op kicks in $2,500 for Okanagan Screen Arts Society’s Save the Towne Theatre campaign

Sicamous RCMP Sgt. Murray McNeil and Cpl. Wade Fisher present Cody Krabbendam of Ranchero with an award for bravery on July 22, 2020. (Contributed)
Shuswap boy receives medal of bravery, scholarship for rescue at Sicamous beach

Last summer Cody Krabbendam jumped into the lake to save another boy from drowning

A young Sicamous Canada Day parade-goer is awed by a colourful float filled with beloved Disney characters during the July 1, 2020 community event. (File photo)
Editorial: Now is the time for Sicamous to shine

Shuswap community might be just what people who work from home are looking for

Greyhound Canada announced May 13 it was closing operations permanently after more than a century of operation. (Black Press file photo)
COLUMN: Goodbye to a never forgotten friend

Greyhound bus trips played a big role in columnist’s life

Someone or something is vandalizing birdhouses built and erected along Salmon Arm’s Foreshore Trail, much to the chagrin of a Shuswap biologist who looks after the houses. All but one of 32 along the trail are occupied. (Facebook photo)
Ongoing birdhouse vandalism rocks Shuswap trail, groups

Eight more boxes were destroyed Saturday, May 15

Daily confirmed COVID-19 cases reported to B.C. public health, seven-day rolling average in white, to May 12, 2021. (B.C. Centre for Disease Control)
B.C. preparing ‘Restart 2.0’ from COVID-19 as June approaches

Daily infections fall below 500 Friday, down to 387 in hospital

File photo (Aaron Hemens/Capital News)
Overturned kayak in Kelowna creek prompts police response

Kelowna RCMP is looking to speak with anyone who may know the individual associated with the kayak

Penticton city parks staff were busy this week using the beach grater to sift through sand, getting the shores ready for beach season. When it comes to beach clean up they are collecting run-off debris, pulling weeds and picking up litter. (Penticton photo)
Hottest day of the year, so far, in the South Okanagan

Penticton city park staff cleaned up the beaches getting ready for the season

This is what the glowing boulders look like at night at 28 Huth Ave. (Submitted)
PHOTOS: Glowing boulders popping up in the Okanagan

Local landscaper Brandon Messier also brought the Lost statue to its new home

Coldstream Fire Department is on-scene Sunday, May 16, battling a fire in a Matner Lane orchard just up the hill from the firehall on Aberdeen Road. (Jennifer Smith - Morning Star)
Okanagan fire crew tackles orchard blaze

Fire broke out just before 2 p.m. on Matner Lane, which is just up the hill from the Coldstream firehall on Aberdeen Road

A drug bust on Government Street in Duncan on Tuesday, March 30, led to a "substantial seizure" according to the North Cowichan/Duncan RCMP. (File photo)
Search continues for diver who went missing in Okanagan Lake

Emergency crews continue to search for the 52-year-old who didn’t resurface Saturday

A vial of AstraZeneca vaccine is seen at a mass COVID-19 vaccination clinic in Calgary, Alta., Thursday, April 22, 2021. Dr. Ben Chan remembers hearing the preliminary reports back in March of blood clots appearing in a handful of European recipients of the Oxford-AstraZeneca COVID-19 vaccine. THE CANADIAN PRESS/Jeff McIntosh
Science on COVID, VITT constantly changing: A look at how doctors keep up

While VITT can represent challenges as a novel disorder, blood clots themselves are not new

Poached trees that were taken recently on Vancouver Island in the Mount Prevost area near Cowichan, B.C. are shown on Sunday, May 10, 2021. Big trees, small trees, dead trees, softwoods and hardwoods have all become valuable targets of tree poachers in British Columbia as timber prices hit record levels. THE CANADIAN PRESS/Jen Osborne.
Tree poaching from public forests increasing in B.C. as lumber hits record prices

Prices for B.C. softwood lumber reached $1,600 for 1,000 board feet compared with about $300 a year ago

Most Read