Nine-year-old Halle Krawczyk is fighting for her life.
The young Salmon Arm girl has “poorly differentiated chordoma,” a rare form of cancer that hits one in 20 million.
On Aug. 28, a year to a day Halle was diagnosed with the medically incurable cancer, her parents, Carolyn and Matt, believed she was recovering well and life would be getting back to some semblance of normality.
The initial diagnosis last August indicated cancer had already spread to Halle’s lungs in two places.
With $60,000 in funding through (Personalized Onco Genomics) POG, geneticists tested the tumour in search of available treatments.
Related: Scientist wants risks of kids’ cancer drugs tested across the country
“Navolumab/Opdivo was the one drug that came back as a potential help,” says Carolyn, noting while testing was underway, Halle suffered through four rounds of six of the most gruelling chemotherapy agents to treat her cancer.
She had a 95 per cent or better response in all the tumours in her body.
“This has been remarkable in itself as I don’t believe any case of the 12 identical cancers in the world our 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.”
An MRI in late June had revealed that the tumours in all places in her body were nearly non existent. But symptoms returned in the past couple of weeks and on Aug. 28, an MRI indicated Halle’s tumours are back, bigger and more virulent than ever.
Halle’s doctors have indicated they are willing to treat the young girl with the Navolumab/Opdivo as soon as it becomes available.
But the process required for getting the drug seems to be wrapped up in red tape and Matt and Carolyn are panicking about the speed with which Halle’s cancer has returned.
“The tumour is now infringing on her spinal cord and she is showing early signs of this tumour impeding her spinal cord,” says Carolyn.
In order to push through the bureaucratic process, the couple has established a petition at https://www.thepetitionsite.com, under ‘health,’ which has already garnered 2,475 signatures.
“It would appear that these tumours are growing at an unprecedented pace. We have no time to waste or to lose which is why I ask you to sign my petition,” she adds.
A GoFundMe account set up last year, under Halle’s Medical Fund, indicates more than $40,000 has been raised, but those funds have since been exhausted and the family will need financial support for Halle’s latest battle.
@SalmonArm
barb.brouwer@saobserver.net
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