Pacific Ties features two APA Bruins fighting Mr. Luke
An article I wrote about two Asian American UCLA Bruins currently fighting leukemia, "Bone marrow drivin' to save lives," was published in Pacific Ties, the Asian American News Magazine at UCLA.
Click here to read the article in .pdf
This is my last rough draft before turning the article in. To read the article as edited by PT copy staff and printed go to the .pdf.
by Marissa Minna Lee
Fifth year UCLA student Janet Liang was supposed to spend fall quarter studying abroad at UC Center Paris. Her pre-travel physical exams led to a diagnosis of acute lymphoblastic leukemia. Instead, she spent fall quarter undergoing intense chemotherapy treatment.
As a UCLA undergrad in the late 1990s, Matthew Nguyen volunteered for Asians for Miracle Marrow Matches (A3M), spending his weekends registering potential donors to help patients in need. Years later, a bloody nose that wouldn’t stop led to a diagnosis of acute myelogenous leukemia, and he had to drop out of pharmacy school. Matthew learned that he would need a marrow donor for himself.
Leukemia can strike anyone, at any time, but when an Asian American is diagnosed, the chances of finding a marrow/stem cell donor-- the key to a lasting recovery --are especially dire.
"We really need help; there are so few minorities registered," Gloria Chi, the Chinese Outreach Recruitment Coordinator for A3M, said. "When there is a patient, it is very difficult to find a match. Just by registering, you are doing something very, very important. Expanding the registry of donors is one of the more concrete ways we can help our community."
While a Caucasian American patient might have an 80% chance of finding a match, the odds are significantly lower for a Chinese American like Janet or a Vietnamese American like Matthew. People with completely different backgrounds can match, but donors are much more likely to match recipients if they have similar ethnic ancestry, and less than 5% of the Asian American population is in the National Marrow Donor Program registry.
"I used to do this for people I didn't know," Nguyen said. "Now I'm the one in need. It could happen to anybody. What if someone you know or someone in your family needs help in the future? Wouldn't you want to know that there are people in the registry for them who can help save their lives? Instead of just trying to save my life--it's not just for me, it's for everybody."
Correcting Misconceptions
Joining the registry is as easy rubbing a few cotton swabs in the mouth. It's even possible to order a free kit online and mail in a cheek cell sample from home.
"Even with the swab, people have a lot of misconceptions about the donation process," Nguyen said. "They think it will hurt, or poke their spine, or they'll have less marrow than they had before. Technology has made things a lot easier and less painful for people who donate."
Nguyen said that Hollywood has dramatized marrow donation to make it look more complicated and painful then it actually is. According to A3M, 74% of modern marrow donations are no longer performed via surgical removal of marrow from the hip bone, but through Peripheral Blood Stem Cell (PBSC) donation, a process similar to donating blood platelets. No surgery is involved.
"The donation process is never going to be as hard as it is for the patient to receive the marrow," Liang said. "If you're ever scared, just know the patient will go through the pain for you. We will go through the thirty days post-transplant and the recovery."
Red Blood; Red Tape
In addition to fighting cancer, Janet Liang quickly learned she would also have to spend hours of energy fighting with her insurance company over policies that delayed her diagnosis and still delay her treatment.
Liang recalled an incident during summer session, prior to her diagnosis, when she was waiting to receive her first blood transfusion after her hemoglobin level fell dangerously low.
"I was pale as a vampire and I needed blood," Liang recalled. "And I get a last minute phone call from insurance saying, 'You can't get the transfusion because you need to prove you are a student.' I literally had to say, please, I am a student. I cannot hike up to Murphy Hall right now. I will faint. I can't express how much I need blood right now. I was literally begging them over the phone."
This incident was one of many conflicts Liang has had with her insurance company over the course of her care. She is even at risk of losing her coverage because she is unable to meet the condition of being a fulltime student, even though it is physically impossible for her to have a normal student schedule.
"Patients like Matthew and me cannot just sit idly by and say everything is taken care of for us," Liang said. "We have to aggressively fight for our lives, push for things-beg for things. Say 'No, we're not going to take no for an answer.' Now I know I have the right to be forceful with insurance."
Liang finally convinced the insurance company to relent and grant her an emergency authorization. She received a blood transfusion from the UCLA Blood and Platelet Center blood bank. She would later witness countless blood transfusions for other patients during her hospital stays.
"People think donated blood is just sitting there in storage, but no, it is used," Liang said. "If you donate blood, they will use it. I bet I probably got some university student blood!"
The Search for a Donor
After two years of searching and waiting, Matthew Nguyen finally received a marrow donation on September 2009. But the search for a donor was daunting and at times discouraging.
The registry contacted the first potential donor on Nguyen's behalf in June 2009. Initially, she told the registry she was unavailable until later that summer. By August, she was no longer in the registry.
"Either she had a medical condition to disqualify her, or she withdrew from the registry," Nguyen said. "I will never know why she didn't donate. Was she just scared? Why wouldn't she do it? To know someone is out there, who you know can save your life, but they just won't do it..."
Nguyen stressed that people who register to be a potential donor should understand they are making a commitment. "People say 'if you get called, you can decide later,' but that's not a good thing to do. Then they won't be sure about it when they're called. I want to make sure [registrants] understand that this is a commitment they're making. It's better to know that they're going to do it."
Luckily, Nguyen was able to find another donor and go through the recipient process. Thanks to an anonymous 24 year old woman from somewhere in the United States, he has received a new, healthy immune system.
"As soon as I can meet my donor I'm going to give her a big hug," Nguyen said. "I'm excited and happy that she went through the process to help save my life and there's nothing I can do to repay her--because that's the biggest thing you can do, to save someone."
Post-transplant, Nguyen was closely monitored by his doctors for side effects, including several check ups and a stint living in a patient apartment on the hospital grounds. While he is still in recovery, he is growing stronger every day and already reapplying for pharmacy school.
"Every day you get happier and happier," Nguyen said, "because you're gaining your life back, and able to tell people: 'I found a donor!'"
Helping Janet
Janet Liang, her friends, and her family have kicked off a grassroots movement at www.helpingjanet.com to encourage more minorities to register with the National Marrow Donor Program.
"I need to find someone out there in this whole world, who--with some luck--can match my HLA protein markers in just the right way," Liang said. "What kind of cancer is so unique in that sense--in that it makes the whole community so aware and somewhat responsible for saving someone else's life?"
During the first week of November, Asian American fraternity Lambda Phi Epsilon and A3M held a marrow donor registration drive in locations scattered across the UCLA campus. James Vo, coordinator of the Lambda-A3M drive, said the registration process is pain free, and takes only a few minutes. The drive registered 240 people.
Interested registrants who missed the Lambda A3M drive in November can visit helpingjanet.com for details on how to register from home with the mail-in kit. The entire process is free for ethnic minorities and also free to anyone with the code TEAMJANET.
"No one should ever feel that we're wasting our time being so aggressive widening our pool," Liang said. "No registered donor is a waste. This is a group effort. If not me, it will help someone else."
--------------------
In writing the article I had the privilege of interviewing both of them over the phone for more than an hour. A lot of articles about marrow donation are short and technical but I was given free reign, so I really wanted to share the human side of their stories. I was so impressed by their inner strength and determination to beat cancer.
You can follow Matthew Nguyen and Janet Liang's progress and thoughts through their respective blogs: TeamMatthew Blogs and Autumn in January.
Matthew is currently post-transplant and while he is still being closely monitored for side effects, he's already re-applying to graduate school. This weekend, Janet was actually discharged early from the hospital since she is responding well to her most recent round of chemo. She is still looking for a match but her grassroots effort has already registered 1,389 people to help the thousands of people searching for a lifesaving donor.
If you haven't registered to join the national marrow donor registry yet, please consider doing so. Like I said in a previous post, there are a lot of discouraging misconceptions about registering and donating, so make sure you know how it works and make an informed decision. You register through a cheek swab and only if you are a match are you asked to donate marrow, oftentimes without surgery. Visit Helping Janet.com for more information and a free registration code.
Helping Janet is also looking for volunteers at drives and events! You can sign up here for a local street team!
Click here to read the article in .pdf
This is my last rough draft before turning the article in. To read the article as edited by PT copy staff and printed go to the .pdf.
by Marissa Minna Lee
Fifth year UCLA student Janet Liang was supposed to spend fall quarter studying abroad at UC Center Paris. Her pre-travel physical exams led to a diagnosis of acute lymphoblastic leukemia. Instead, she spent fall quarter undergoing intense chemotherapy treatment.
As a UCLA undergrad in the late 1990s, Matthew Nguyen volunteered for Asians for Miracle Marrow Matches (A3M), spending his weekends registering potential donors to help patients in need. Years later, a bloody nose that wouldn’t stop led to a diagnosis of acute myelogenous leukemia, and he had to drop out of pharmacy school. Matthew learned that he would need a marrow donor for himself.
Leukemia can strike anyone, at any time, but when an Asian American is diagnosed, the chances of finding a marrow/stem cell donor-- the key to a lasting recovery --are especially dire.
"We really need help; there are so few minorities registered," Gloria Chi, the Chinese Outreach Recruitment Coordinator for A3M, said. "When there is a patient, it is very difficult to find a match. Just by registering, you are doing something very, very important. Expanding the registry of donors is one of the more concrete ways we can help our community."
While a Caucasian American patient might have an 80% chance of finding a match, the odds are significantly lower for a Chinese American like Janet or a Vietnamese American like Matthew. People with completely different backgrounds can match, but donors are much more likely to match recipients if they have similar ethnic ancestry, and less than 5% of the Asian American population is in the National Marrow Donor Program registry.
"I used to do this for people I didn't know," Nguyen said. "Now I'm the one in need. It could happen to anybody. What if someone you know or someone in your family needs help in the future? Wouldn't you want to know that there are people in the registry for them who can help save their lives? Instead of just trying to save my life--it's not just for me, it's for everybody."
Correcting Misconceptions
Joining the registry is as easy rubbing a few cotton swabs in the mouth. It's even possible to order a free kit online and mail in a cheek cell sample from home.
"Even with the swab, people have a lot of misconceptions about the donation process," Nguyen said. "They think it will hurt, or poke their spine, or they'll have less marrow than they had before. Technology has made things a lot easier and less painful for people who donate."
Nguyen said that Hollywood has dramatized marrow donation to make it look more complicated and painful then it actually is. According to A3M, 74% of modern marrow donations are no longer performed via surgical removal of marrow from the hip bone, but through Peripheral Blood Stem Cell (PBSC) donation, a process similar to donating blood platelets. No surgery is involved.
"The donation process is never going to be as hard as it is for the patient to receive the marrow," Liang said. "If you're ever scared, just know the patient will go through the pain for you. We will go through the thirty days post-transplant and the recovery."
Red Blood; Red Tape
In addition to fighting cancer, Janet Liang quickly learned she would also have to spend hours of energy fighting with her insurance company over policies that delayed her diagnosis and still delay her treatment.
Liang recalled an incident during summer session, prior to her diagnosis, when she was waiting to receive her first blood transfusion after her hemoglobin level fell dangerously low.
"I was pale as a vampire and I needed blood," Liang recalled. "And I get a last minute phone call from insurance saying, 'You can't get the transfusion because you need to prove you are a student.' I literally had to say, please, I am a student. I cannot hike up to Murphy Hall right now. I will faint. I can't express how much I need blood right now. I was literally begging them over the phone."
This incident was one of many conflicts Liang has had with her insurance company over the course of her care. She is even at risk of losing her coverage because she is unable to meet the condition of being a fulltime student, even though it is physically impossible for her to have a normal student schedule.
"Patients like Matthew and me cannot just sit idly by and say everything is taken care of for us," Liang said. "We have to aggressively fight for our lives, push for things-beg for things. Say 'No, we're not going to take no for an answer.' Now I know I have the right to be forceful with insurance."
Liang finally convinced the insurance company to relent and grant her an emergency authorization. She received a blood transfusion from the UCLA Blood and Platelet Center blood bank. She would later witness countless blood transfusions for other patients during her hospital stays.
"People think donated blood is just sitting there in storage, but no, it is used," Liang said. "If you donate blood, they will use it. I bet I probably got some university student blood!"
The Search for a Donor
After two years of searching and waiting, Matthew Nguyen finally received a marrow donation on September 2009. But the search for a donor was daunting and at times discouraging.
The registry contacted the first potential donor on Nguyen's behalf in June 2009. Initially, she told the registry she was unavailable until later that summer. By August, she was no longer in the registry.
"Either she had a medical condition to disqualify her, or she withdrew from the registry," Nguyen said. "I will never know why she didn't donate. Was she just scared? Why wouldn't she do it? To know someone is out there, who you know can save your life, but they just won't do it..."
Nguyen stressed that people who register to be a potential donor should understand they are making a commitment. "People say 'if you get called, you can decide later,' but that's not a good thing to do. Then they won't be sure about it when they're called. I want to make sure [registrants] understand that this is a commitment they're making. It's better to know that they're going to do it."
Luckily, Nguyen was able to find another donor and go through the recipient process. Thanks to an anonymous 24 year old woman from somewhere in the United States, he has received a new, healthy immune system.
"As soon as I can meet my donor I'm going to give her a big hug," Nguyen said. "I'm excited and happy that she went through the process to help save my life and there's nothing I can do to repay her--because that's the biggest thing you can do, to save someone."
Post-transplant, Nguyen was closely monitored by his doctors for side effects, including several check ups and a stint living in a patient apartment on the hospital grounds. While he is still in recovery, he is growing stronger every day and already reapplying for pharmacy school.
"Every day you get happier and happier," Nguyen said, "because you're gaining your life back, and able to tell people: 'I found a donor!'"
Helping Janet
Janet Liang, her friends, and her family have kicked off a grassroots movement at www.helpingjanet.com to encourage more minorities to register with the National Marrow Donor Program.
"I need to find someone out there in this whole world, who--with some luck--can match my HLA protein markers in just the right way," Liang said. "What kind of cancer is so unique in that sense--in that it makes the whole community so aware and somewhat responsible for saving someone else's life?"
During the first week of November, Asian American fraternity Lambda Phi Epsilon and A3M held a marrow donor registration drive in locations scattered across the UCLA campus. James Vo, coordinator of the Lambda-A3M drive, said the registration process is pain free, and takes only a few minutes. The drive registered 240 people.
Interested registrants who missed the Lambda A3M drive in November can visit helpingjanet.com for details on how to register from home with the mail-in kit. The entire process is free for ethnic minorities and also free to anyone with the code TEAMJANET.
"No one should ever feel that we're wasting our time being so aggressive widening our pool," Liang said. "No registered donor is a waste. This is a group effort. If not me, it will help someone else."
--------------------
In writing the article I had the privilege of interviewing both of them over the phone for more than an hour. A lot of articles about marrow donation are short and technical but I was given free reign, so I really wanted to share the human side of their stories. I was so impressed by their inner strength and determination to beat cancer.
You can follow Matthew Nguyen and Janet Liang's progress and thoughts through their respective blogs: TeamMatthew Blogs and Autumn in January.
Matthew is currently post-transplant and while he is still being closely monitored for side effects, he's already re-applying to graduate school. This weekend, Janet was actually discharged early from the hospital since she is responding well to her most recent round of chemo. She is still looking for a match but her grassroots effort has already registered 1,389 people to help the thousands of people searching for a lifesaving donor.
If you haven't registered to join the national marrow donor registry yet, please consider doing so. Like I said in a previous post, there are a lot of discouraging misconceptions about registering and donating, so make sure you know how it works and make an informed decision. You register through a cheek swab and only if you are a match are you asked to donate marrow, oftentimes without surgery. Visit Helping Janet.com for more information and a free registration code.
Helping Janet is also looking for volunteers at drives and events! You can sign up here for a local street team!