Carolyn and Matt, Halle and Hunter Krawczyk from Salmon Arm are grateful a drug that might help nine-year-old Halle in her fight with a rare and vicious form of cancer has received approval through the BC Cancer Agency’s Compassionate Access Program. (Photo contributed)

Cancer returns to young B.C. girl with a vengeance

Shuswap family is grateful a drug geneticists believe could help will be made available

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: Coast to coast for cancer

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.

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.

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

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

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Jocelyn’s Jottings: Scared by my latest hydro bill

Luckily I have set up an equal payment plan with BC Hydro… Continue reading

Snow, snow and snow for Revelstoke

The white stuff will continue to fall into next week

Revelstoke already double last year’s snowfall

The city is just below halfway to the snowiest winter on record

Have your say on what it takes raising toddlers in Revelstoke

The study started collecting data last summer and is expected to continue until at least May

Canada to bolster screening of central China passengers for virus at 3 airports

Additional measures will include messaging on arrivals screens in Toronto, Montreal and Vancouver

Prince Harry, Meghan to give up ‘royal highness’ titles

‘Harry, Meghan and Archie will always be much loved members of my family,’ says Queen Elizabeth II

Photo reminds Salmon Arm resident of connection to former drama teacher Justin Trudeau

Prime minister remembered as being as a funny, larger-than-life person

Province says it is monitoring AIM’s road maintenance

The provincial transportation ministry is working closely with new road contractor AIM,… Continue reading

B.C. society calls out conservation officer after dropping off bear cub covered in ice

Ice can be seen in video matted into emaciated bear cub’s fur

Calls for dialogue as Coastal GasLink pipeline polarizes some in northern B.C.

Coastal GasLink is building the 670-kilometre pipeline from British Columbia’s northeast to Kitimat on the coast

Coquihalla, Highway 3 to be hit with freezing rain, sparking warning to commuters

Hard to say when the freezing rain will turn to regular rainfall, Environment Canada says

‘Lift for Wills’ community fundraiser to support Penticton boy fighting cancer

This Sunday, stop by World Gym Penticton for by-donation drop-in classes, a silent auction, more.

Closed mills, housing surge support a positive forecast for lumber industries

B.C. lumber producers have closed mills accounting for 18% of province’s capacity, RBC report says

Most Read