Young Grunthal boy with leukemia gets new treatment in Toronto –

Young Grunthal boy with leukemia gets new treatment in Toronto –

Friends and parents of a young boy from the Grunthal region with acute myeloid leukemia (AML) are seeing great results with a new, innovative treatment.

Paul and Agnes Hildebrand, who recently emigrated from Paraguay, have five children. The second youngest, Kylian, was recently diagnosed with AML.

The father tells about his son’s journey.

“The cancer started last October and after treatment at Winnipeg Children’s Hospital failed, he was transferred to the Hospital for Sick Kids in Toronto, where he is on a new medication that is now working great.”

Three-year-old Kylian Hildebrand (Photo credit: supplied)

Shirley Hiebert, a family friend and translator, says, “This form of cancer (AML) is aggressive and difficult to treat because the disease starts in the bone marrow.”

Hiebert continues: “Kylian was treated with chemotherapy in Winnipeg from October 2023 to April of this year, but when it didn’t work, they had to stop the treatment.”

She says the family had heard about a new investigational AML drug being given to patients in Toronto, so they requested that Kylian receive it.

Hiebert says: “Waiting to see if Kylian could get the drug was stressful for Paul and Agnes. In addition, English is not their native language. Furthermore, medical terminology is not easy to understand, especially in a complicated case like Kylian’s.”

Kylian received his first Revumenib treatment in early May and doctors say he is responding very well to the new drug.

Revumenib is a targeted therapy drug because it attacks the cancer gene that stops cancer from developing. Hiebert adds that the test results so far in clinical trials have been promising. She says this type of treatment is a new and different approach compared to traditional chemotherapy, given in a 28-day cycle.

“He (Kylian) is on his second cycle of treatment and it’s working well. Just a month ago he was very sick, but now he’s active, smiling and playful.”

Hiebert hopes that regulatory approval of this drug will also benefit others struggling with AML.

“Once it is approved, it will make a huge difference for future patients. They won’t have to go through what Kylian went through.”

Meanwhile, Hiebert says there are also the daily challenges the family faces because of Kylian’s illness, one of which is distance. The Hildebrands have to travel back and forth to Toronto to be with their son, who requires 24-hour care. Sharing his thoughts through Hiebert’s translator, the father says, “It’s been tough. The kids miss having a parent in Toronto. It’s definitely put a strain on their family dynamic.”

But they remain hopeful, Hiebert adds. “Revumenib has stopped the cells from developing more cancer, but his bone marrow is still full of cancer cells. They hope he can return to Manitoba soon for a transplant. Kylian’s brother Julian is a match.”

Hiebert adds that the financial burden has been significant. “Paul has been unable to work since October, and while Manitoba Health is covering the costs in Toronto, other expenses are adding up.”

She notes that the family has a strong network of people around them. “Their family has been very supportive and there have been fundraising efforts to help with additional costs.” Some family members even traveled from Paraguay to Canada to help with the children.

Hiebert says fundraising efforts have also been started to support Kylian’s ongoing treatment. “We started a GoFundMe page a few days ago called ‘Caring for Kylian’s Cancer Journey.’”

Hildebrand notes that there have been many challenges in the past few months. “It has been a journey with highs and lows, but we are grateful for the support and have hope for Kylian’s future.”

Hiebert gives hope to other AML patients hoping to get this kind of treatment. “There’s been a rush to get this drug through the regulatory process, which normally takes two years. They know it works and they want to offer it to the general population so that in the future, when it’s approved for everyone, it will mean a healthier individual for other treatments like bone marrow transplantation, and their journey will be less arduous.”