Toronto family in urgent need of stem cell donor
Boy, 3, battling leukemia struggling to find ethnic match for transplant
On Jan. 11, the Pesito family received heartbreaking news that would change their life forever.
What started as a regular pediatrician appointment for a fever turned into a visit to Sick Kids Hospital to get blood work. Their three-year-old son, Xavier, was diagnosed with juvenile myelomonocytic leukemia (JMML), a rare form of blood cancer that affects young children.
“I was FaceTiming my husband from the hospital and the first thing the doctor said was, ‘Xavier has blood cancer,’ and I cried. You hear the word cancer and you think the worse,” said Xavier’s mother, Cynthia Ngo.
Occupied with routine hospital visits at Sick Kids, Ngo says the pandemic has made it harder for their young family to cope, with finances already being limited.
“I don’t think he understands the severity of the diagnosis at his age, we just told him that he is sick and would need to go to the hospital to get better.”
JMML occurs when the bone marrow produces white blood cells called monocytes and myelocytes do not mature normally, causing the cells to grow too quickly, reproduce and take up too much space.
According to St. Jude Children’s Research Hospital in Michigan, one to two children out of a million each year are diagnosed. JMML occurs most often in children younger than four years, and 10 per cent of all cases develop in infants younger than three months. The disease accounts for 1.6 per cent of all blood-related cancers.
With a stem cell transplant the only successful cure, Xavier’s chances of survival depend on finding a match. While there is a 25 per cent chance of finding a donor within his own family, none of his immediate family members are a match. His one-year-old sister, Lily, is only a 25 per cent match.
“It’s really sad and alarming. I like to think my son needs a donor, and the chances of him having a really good match are scary,” says Ngo. “Knowing this, it makes me worry. What is it going to be like for him in the next weeks or months?”
Xavier would need someone who is also half-Vietnamese and half-Filipino, between the ages of 17 and 35 and in good general health without any infectious diseases or underlying conditions.
The chances of finding a match are higher if a donor shares the same ethnic background, but finding a match can be difficult considering the lack of diverse donors in the Canadian stem cell registry.
According to Canadian Blood Services, Southeast Asian stem cell donors make up two per cent of the Canadian stem cell database. Mixed race donors make up 3.6 per cent of the database. That compares to an overwhelming 68 per cent of stem cell donors being Caucasian.
“I think part of the reason why we have a huge need for more Indigenous Asian, South Asian, Hispanic, Black and mixed race donors is that we have such a hard time recruiting donors of diverse backgrounds,” says Dr. Heidi Elmoazzen, director of Cord Blood Bank and Stem Cell Manufacturing at Canadian Blood Services.
“For a patient like Xavier, we would not only search our own Canadian registry of about 460,000 people, but also search the global registry with about 38 million potential donors that we have access to.”
According to Canadian Blood Services, Southeast Asian stem cell donors make up two per cent of the Canadian stem cell database
According to Elmoazzen, roughly 80 to 90 per cent of Canadian patients receive transplants outside of the country.
However, international transplants are becoming increasingly difficult because of border restrictions brought on by the pandemic.
And the need for domestic donors is increasingly urgent considering stem cell recruitment has dropped by roughly 70 per cent due to the cancellation of many community swabbing drives.
Despite everything, the Pesito family remains optimistic, crediting the power of social media for sharing their story and spreading awareness for juvenile leukemia and diverse stem cell donation.
Local initiatives such as OtherHalf also bring awareness to the need for diverse donors, dispelling myths regarding stem cell donation among the Chinese-Canadian population and encouraging potential donors to get registered.
“Xavier has been really brave and strong throughout this journey. You don’t see a threeyear-old take the news well or handle it like he does; he is very inspiring,” Ngo says.
Anyone between the ages of 17 and 35 interested in registering as a potential stem cell donor can register online, request a swabbing kit, and send samples through the mail.
The family has also set up a GoFundMe page to cover the costs of transportation for hospital visits and living expenses.