Having a child diagnosed with cancer is an emotional roller coaster at best, but the Krawczyk family has just reached an unexpected high.
Monday afternoon, Dec. 7, 12-year-old Halle Krawczyk’s Vancouver oncologist informed the family that the Medical Services Plan (MSP) has reversed its decision to not fund Halle’s surgeries for ‘poorly differentiated chordoma,’ a rare and deadly cancer that affects one in 20 million people.
Although Carolyn and Matt initially expected the three required operations with a world-renowned surgeon in Pittsburgh would be more than $100,000, they learned Dec. 4 that the surgeries would actually cost a minimum of $325,000 Cdn.
With associated bills in Canada while not being able to work, along with hotel accommodation, transportation, medical insurance and more during the six months in the U.S., the family was looking at a total cost of at least $500,000.
They are thrilled with the news.
Although the Krawczyks are still left with at least $150,000 in immediate expenses following the MSP’s change of heart, Carolyn and Matt’s first concern was about those people who have been or will be donating money.
“We do not want anyone to be misled in their giving!” Carolyn wrote in an email to the Observer as soon as she received the news.
Leading up to this, the family had been told that the doctor and his team in Pittsburgh are best qualified to perform the rare pediatric surgery. However, MSP had told them that the surgery can’t be funded because the Canadian policy is that if a doctor in Canada can do the surgery, then it won’t be covered in the United States, Carolyn said.
Although that might be a good policy for some surgeries, this one is different, she had said, noting that Canada just doesn’t have the experience. The U.S. sees many more cases of chordoma, with just five per cent of them pediatric. Halle’s form of chordoma is even more rare.
As well as two surgeries removing the rapidly growing tumours on two upper vertebrae and on the clivus behind her nose, she must also have a spinal fusion. Proton beam radiation following the three needed operations could then prolong her life indefinitely.
“We’ve got one chance, we don’t want to mess it up,” Carolyn said.
She explained that she and Matt have been focusing so hard on advocating for the surgery for Halle that tallying all the additional upcoming costs has been secondary.
“We’ve been in total fight mode to just try to get Halle help that we haven’t been able to focus on all the things we need to. Hopefully we can do that now.”
Right now, gratitude is the prevailing emotion: “The great news is we know Halle gets her best shot at beating this!!!”