A Surrey surgeon is desperately hoping someone will materialize who will be able to help save his wife’s life.
Out of 29 million people on the international bone marrow registry, not one matches Dr. Ronald Lett’s wife Elsa Nega.
In February of this year, Nega was diagnosed with Acute Lymphoblastic Leukemia.
“One day she was fine, the next she was in ICU,” said Lett, who works at Surrey Memorial Hospital.
Nega began chemotherapy immediately and unlike some patients who go into remission after the first round of chemotherapy, she did not.
After three rounds of chemo, it now looks like a bone marrow transplant is her only hope of recovery.
Her brother and sister in Ethiopia have been tested, but are not matches. Neither are the 29 million people in the international bone marrow registry.
“She is now on what’s called bridging chemotherapy,” explained Lett, “which is hoped to keep away the leukemia until a match is found.”
Lett said the problem is that the international registry is not ethnically diverse.
“It’s largely Caucasian,” he said.
Being African means that she has a slim chance of finding a match on the registry, noted Lett.
Caucasians have a 75 per cent chance of finding a perfect match in the worldwide registry while Africans have just 19 per cent chance. The best chance of finding a donor is with someone of a similar ethnicity.
Meanwhile, Nega’s outlook is unknown and urgent.
“The doctors don’t say much,” said Lett. “They comment on what her blood count is today, does she have platelets, white cells and red cells, and if she doesn’t, they transfuse her.
“They basically say her outlook, if she got a bone marrow transplant, she would have a 50 per cent change of a cure. With leukemia, there’s no such thing as with other malignancies, like five-year or 10-year survival, it’s either yes or no. You’re cured or you’re not.”
The family has started the #Match4Elsa campaign, in hopes of finding someone to save Nega and to increase the number of people on the international registry.
For now, Nega is in a holding pattern, getting less aggressive chemotherapy than before, while they wait to hopefully find a donor.
Lett said her physical condition changes “not day to day, but hour to hour.”
But, he added, “she’s a lot tougher about it then I would’ve been.”
Nega said “every minute is important” to her while she optimistically awaits a donor.
‘This is like a lottery,” she said slowly.
“I don’t want to die,” Nega added. “I want to live for my kids. My kids need me. I realized that after I was diagnosed, how much they need me, how much they miss me, all the house gets upside down.
“I don’t want to show my pain,” she continued. “I want to fight. I want to do what I have to do for my kids.”
Many people don’t realize how easy it is to register and donate, said Nega.
It’s not as invasive as one might assume, she explained.
“Seventy-five per cent they take from the arm, from the blood. Twenty-five per cent for related donors they take from the bone,” she said. “Bone marrow donation is easy. It (can be) similar to donating blood. But it’s very important for human who have leukemia.”
She stressed it’s not just her, but “many, many people in the world” who are in need.
“Even if I can’t find a match, you might save someone else,” she added.
The couple is set to celebrate their 10th anniversary this October.
They met while Lett was teaching in Africa, which he does through the non-profit Canadian Network for International Surgery(CNIS) he founded more than 20 years ago that has trained more than 30,000 healthcare workers there.
Lett urged people to get tested.
“It’s not like you have to give up a kidney or something like that. But bone marrow is an organ and we all need them to survive,” he said. “We need bone marrow to produce our blood and our immune system. Without that we’re in trouble.”
To sign up you can go to a drive or sign up online for a cheek swab kit. All it takes is a simple swab check.
For more information visit onematch.ca. One Match says to be eligible, you must be between 17 and 35 years of age and certain health criteria.
Read more about Nega at match4elsa.com.
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