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.”
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.
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 firstname.lastname@example.org.