Nearly ten months ago, the Fowler family received news that changed their lives forever.
At a regular Sunday family dinner last year, Mandy Fowler was pushing her five-year-old son Kayge on a swing set when she noticed his mouth had suddenly drooped on one side of his face. Kayge’s condition progressively deteriorated as his vision became obstructed and he lost the ability to use the left side of his body.
Within a matter of weeks after a number of emergency room visits and what seemed to be false diagnoses, an MRI revealed that Kayge had diffuse intrinsic pontine glioma, an incurable and terminal type of brain cancer.
Each year, 30 children in Canada are diagnosed with DIPG. The disease has a zero per cent survival rate, which is due to the delicate location of where the tumour grows in the middle of the brain. DIPG tumours cannot be surgically removed because the process would damage the brainstem that controls necessary functions like breathing, heart regulation and movement. Radiation is the treatment path most often taken in order to prolong lifespan.
Doctors told the Fowlers, who live in Sault Ste Marie, Ont., that they could put Kayge through 30 rounds of radiation to buy them some time, but they would be lucky if their son made it past nine months.
“They told us to go home and make memories because of how far the tumour had progressed by the time they had caught it,” said Mandy Fowler. “That was really hard to hear, but we weren’t willing to give up on Kayge.”
Fowler said her husband did a lot of research to find alternative treatments for Kayge. Eventually, they learned about two types of chemotherapy — intra-arterial and intrathecal — which are offered in Mexico.
Intra-arterial chemotherapy uses a catheter to deliver the drugs into the tumour through an artery and can limit the negative side effects of chemotherapy. Intrathecal chemotherapy is a method that targets the spine.
The family started traveling to hospitals in Mexico two months after receiving the diagnosis, flying there every 28 days to get these treatments. Including travel time, the trips have taken them anywhere from seven to nine days.
Fowler said both methods have been successful in shrinking the size of the original tumour, but have also given Kayge the ability to live his life more comfortably.
“As much as we are trying to save his life, we don’t want to make it that he can’t live his life while he’s here,” said Fowler. “Everything we’ve done so far has improved his quality of life.”
The treatment comes with a hefty price tag for the family of seven, costing $25,000 each month because of the extensive traveling. In 2017, Canadians made more than 217,000 trips to other countries for healthcare, spending $690 million, according to a recent report by SecondStreet.org.
Despite the treatment, the family received news that a second tumour had developed in Kayge’s brain in October, 2018.
Kayge had to undergo an additional operation in Mexico to insert a device under his scalp to treat the second tumour. Fowler said the three procedures combined amounted to more than $40,000 in expenses.
The boy has undergone more than eight treatments since his diagnosis. Fowler said her family has only been able to afford them with the financial support of residents in Sault Ste Marie.
“There are no words. Kayge wouldn’t be here if it wasn’t for our community,” she explained. “My husband has been off work since May 24. I only work four or five days a month. We don’t have savings. We don’t have anything.”
Community fundraising events such as garage sales have allowed Fowler and her husband to travel fully subsidized with Kayge each month. A close friend of the family also started a GoFundMe page, which had amassed just over $42,000 out of their $500,000 goal by Tuesday morning.
The family has also been in the process of starting a foundation called “Kayge Fighters Against DIPG Foundation.” Fowler said she hopes it will create greater awareness about disease, help connect other families to alternative treatments and raise money for research.
“Nobody should have to go through this,” she said. “This has torn our family apart.”
And while Fowler said she would continue to do everything in her power to keep her son alive, both her and her husband know they have to be realistic.
“It’s scary to feel hopeful. We’re not oblivious to the statistic,” she said. “We know that the chances of him surviving this are very slim, but we are hopeful that a cure might come while we have been able to keep him alive. For now, we’re just trying to make the best of the time we have with him while he’s here.”