Friends and parents of a young boy from the Grunthal area, with Acute Myeloid Leukemia (AML), are seeing great results with a new innovative treatment.  

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

The father explains his son's journey. 

"The cancer started last October, and after treatment at the Winnipeg Children's Hospital didn't work, he was transferred to Hospital for Sick Kids in Toronto where he is receiving a new medicine which is working great now.”

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

Shirley Hiebert, a relative and translator says, "This type of cancer (AML) starts in the bone marrow. It is aggressive and hard to treat."

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

She says the family heard about a Revumenib new AML research drug being given to patients in Toronto. The oncologist applied for Kylian to receive it. The drug was Kylian's last resort.

Hiebert says, “Waiting to see whether Kylian would be able to get the drug was stressful for Paul and Agnes. In addition, English isn't their first language. As well, medical terminology isn't easy to understand, especially in a complicated case like Kylian's.”

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

Revumenib is a target-therapy drug because it attacks the cancer gene which stops the cancer from developing. Hiebert adds the test results so far have been very promising in clinical trials. She says this kind of treatment is a new and different approach compared to traditional chemotherapy. The drug is given on 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 ill, but now he's active, laughing and playful."

Looking ahead, Hiebert is hopeful that the regulatory approval of this drug would benefit others battling AML.

"Once approved, it will make a huge difference for future patients. They will get the drug early in their disease. Then they won't have to endure what Kylian has gone through.”

In the meantime, Hiebert says there are also the day-to-day challenges faced by the family because of Kylian's illness, one being distance. The Hildebrands need to travel back and forth to Toronto to be with their son, who needs round-the-clock care. The father shares his thoughts through translator Hiebert saying, "It's been hard. The kids miss the parent who's in Toronto. There is definitely a strain on their family dynamics.”

But they remain hopeful, Hiebert adds. “Revumenib has stopped the cells from developing more cancer, however, a bone marrow transplant will be necessary. They are hoping that he will be able to return to Manitoba soon to have a transplant. Kylian’s brother Julian is a match.”

Hiebert adds financially, the burden has been significant. "Paul hasn't been able to work since October, and although Manitoba Health covers expenses in Toronto, other costs add up."

She notes that the family has a strong network of people surrounding them. "Their family has been very supportive, and there have been family fundraising efforts to help with additional expenses.” Some family members even traveling to Canada from Paraguay to help with the children.

Hiebert says that fundraising efforts have also been launched to support Kylian's ongoing treatment. "We just 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 months. "It's been a journey of highs and lows, but we're grateful for the support and hopeful for Kylian's future."

Hiebert gives hope to other AML patients hoping to receive this kind of treatment. "There's been a rush put on getting this drug through the regulatory process. It is expected to be approved in the US in September and in Canada after that. They know it works and they want to get it out to other AML patients so that in the future they will be able to get it early in their illness when they are not as sick."

Revumenib is currently in clinical trials for other cancers.