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

Just Posted

Offences occurred while Ivan Glen Winchester was living in Summerland between 2006 and 2010

A former Summerland man, wanted for historical sexual offences, has been arrested… Continue reading

Silt slide south of Summerland on Highway 97

Traffic was delayed approx. 30 minutes, not related to rock slide north of Summerland

Skier dies at Revelstoke Mountain Resort

Cause of death has not been released

Readers weigh in: Should shock collars on dogs be banned?

We asked and you had a lot to say. Here’s some of what

National Energy Board approves Trans Mountain pipeline again

Next step includes cabinet voting on the controversial expansion

B.C. Special Olympics officially underway in Vernon

Athlete’s Oath: “Let me win. But if I cannot win, let me be brave in the attempt.”

Vancouver Aquarium wants your help to name a baby killer whale

The public helped name Springer’s first calf, Spirit, and is being asked to help with the second

Kelowna subdivision slope erosion fuels landslide fears

City says up to $1.2 million in slope remedial work is required this spring

Golds basketball team tops rankings ahead of Okanagan Valley Championships

Salmon Arm team heads straight to semifinals after stellar season

UPDATE: Highway 97A reopened north of Vernon

Three people are in hospital following crash that has one in critical condition

Guards protest firing of fellow officers charged with assault at B.C. prison

Corrections officers demonstrated in Maple Ridge on Friday afternoon

Parole angers parents of Okanagan manslaughter victim

Tal Kalum LaRiviere was arrested in Alberta Feb. 18. He had previously been granted day parole

School district facing capacity challenges

Rising enrolment, outdated data and classroom changes prompt discussions

Most Read