For those of you who skim, I’ll get to the point and implore you to check out The National Marrow Donor Program and Asian Americans for Miracle Marrow Matches. People of color are extremely under represented in the registry, specifically in the Asian American community so please take the time to consider and save a life.
Now back for those who are reading on:
As I’ve written in past blogs, the main plot of my film Sunset Stories involves a nurse who loses a bone marrow specimen that she is transporting cross-country. It was inspired by my sister, who works in a pediatric oncological hospital as a CHOC Children’s BMT (blood and marrow transplant) Coordinator. I’ve always been worried about talking explicitly about both simultaneously because I feared coming off as an opportunist from the whole film promoting aspect of it all. But after talking to a lot of people, I just decided that it is what it is and while on one hand it could be seen in a negative light, I also don’t want to miss an opportunity to use it as a positive tool.
In my film, the bone marrow specimen became a metaphor for the interconnectivity of our friends, loved ones, families, communities that go beyond blood and biology. As filmmakers, we were careful in our mix of such a serious subject mixed with the fairy tale/fantasy tone. Yes, we understood the stakes are very high – life and death, in fact. But we wanted to show the audience that they could participate in a happy fairy tale ending, that they have the power to give that happiness to someone else.
For this blog, I interviewed my sister since it was her perspective that inspired me to make my movie. Speaking of perspective – I always complain that filmmaking is OH, SO HARD, but really, in the scope of things, it is CAKE. I could never do what my sister does day in and day out. It would utterly destroy me. Just reading her answers made me bawl.
It seems like a difficult job in so many levels, how did you decide to work in a children’s oncology hospital?
I wish I could say that I became a nurse for a noble cause…to care for children with cancer and blood diseases and that this is a “calling”…but in truth, at the time, I just needed a job…desperately. After working many years as an LVN in convalescent and rehab nursing facilities, I earned my RN degree and literally did a one-eighty with my career and applied to a PICU, NICU, and OICU (Oncology Intensive Care Unit/Blood and Marrow Transplant Unit) for a children’s hospital. What started out as “only a job,” eventually morphed into a “calling”. From the very first day when a 5-year old busted my balls (if I had balls) by zeroing on me as a rookie to 14 years later having a philosophical conversation with a 10-year old about death and dying, I really don’t think I can see myself doing anything else.
What is the most difficult part of the job?
Have you heard of arsenic? Yeah…it’s a precursor or an ingredient in wood preservative, paint pigment, and rodenticide (uhhhmmmm…yeah, that’s “rat poison” in layman’s term).
Here’s the reality in the oncology world. In order for patients to survive or fight cancer, we need to fight fire with fire. Patients receive chemotherapy agents, radiation, biologics and other pharmaceuticals, like arsenic trioxide, that could potentially kill them, but hopefully it destroys the cancer first before it kills them. As for the nurses, we put on special protective equipment, we gown up, glove up, and shield up, as we give kids these toxic treatment through their central lines (tubes sticking out of their chest). Ironic really, the treatment is so toxic, we have to don protective apparel but we so easily administer the same toxic treatment to kids.
The most difficult part of the job?…
…when it was my turn to go to NICU and give a 5-day old leukemia patient his chemotherapy to potentially save his life if the complications from treatment don’t kill him first.
…when I had to advise parents to give their child one final permission, one final reassurance. And then stay with them as they tell their only child that “it’s ok to let go, it’s ok to rest, it’s ok to stop fighting. Mommy and Daddy will be ok.” Kids are amazing…they’re tough and they will keep hanging on. The thing is…most of the time, they keep fighting, keeping taking treatment not for themselves but because they think their parents will not be ok when they are gone.
…when I come home at night and see the news of people killing people, mass teen suicide pacts, kids dying from…what’s the latest thing now? Sniffing aerosol cans?…after having spent a day watching parents pray, asking for just a few more days with their child.
It’s not fair.
Over the years, the field of pediatric oncology and hematopoietic progenitor cell transplant (terminology we use to describe transplant using one of these sources: bone marrow, stem cells, or cord blood), which I will refer to as BMT from here on out, has gained so many strides to cure cancer. Being a part of these milestones, is such a great feeling.
I find that I work with some of the most brilliant, compassionate, and dedicated doctors, nurses, social workers, pharmacists, therapists, social workers, psychologists and many more that make up our healthcare team. Collaborating with them to reach the same goal is an amazing experience.
I had a patient once, outgoing, popular, scholar, athlete, singer, just a big ball of energy. Two days before her 16th birthday, she was diagnosed with Acute Myelogenous Leukemia (worst of the 2 acute leukemias) and has also gone to the central nervous system. She celebrated her 16th birthday in OICU with a brand new central line (tube sticking out on her chest so we can give her chemotherapy), a shaved head, and a new normal (one filled with many hospitalizations and chemotherapy treatments, missed high school activities). Most rewarding about this job…watching her graduate high school two years later, married another five years later, and a visit with her son another two years later.
Most rewarding…I come home at night, knowing that I’ve made a difference that day.
Have you read “The Fault in Our Stars” by John Green? You have to, it such a humbling read. It’s a story of adolescents with cancer and how they deal with death and dying. It sounds really sad, but you will be amazed that these characters…I’ve seen them, everyday, and they are amazing.
How did you get involved in the transport of bone marrow or stem cells?
In the BMT world, volunteerism is really big. The donors donate their bone marrow or stem cells and their time without compensation. The couriers volunteer to transport the cells to their final destination. The couriers must be trained to handle airport security requirements, international travel, changes in flights, and so on.
The staff from the transplant center (this where I’m from), donor center, collection center or coordinating center are usually asked by the National Marrow Donor Program registry to volunteer to courier. If we can’t, then a courier is chosen from a pool of trained volunteers. I used to have the time to accept a few courier runs every now and then, but now I concentrate on finding donors and getting patients and their families for BMT.
Can you describe your experience as a courier?
Being a courier is far from being glamorous or exciting. Sure, you get to travel to many places, some of them even exotic, for free…but you really don’t get to see much. Domestic courier runs are only 2 days long and international are 3 days, which means enough time to fly there, pick up and fly back. Unless you really like to fly, hang around airports, and hassle with airport security, it really is no fun. But we do it because we want to see that very precious cargo safely to its destination.
There was this one time…on my way back from Germany and this was post 9/11 (so security was tight). It is always preferred that the product doesn’t go through x-ray, so I had asked for a manual, visual inspection instead. I handed security the proper paperwork and with gloves on, I proceeded to remove the bone marrow product (which by the way, looks just like blood) from the cooler to show them. I didn’t know what happen exactly but the next thing I know someone had called a “code” because one of the guards fainted from the sight of this big bag of blood. It was pretty comical actually.
As a courier, I had to carry around a cooler everywhere that includes the bathroom. It has to be within arm’s length from you at all times. Losing this precious cargo is so not an option. So when I heard the background story to your film, I was mortified to say the least.
What are the statistical odds to finding donor matches?
Statistical odds are very complicated. I was taught to look at statistics this way: it either works for you, 100% or it doesn’t, 0%. Let me explain. Let’s say that you are the only potential donor for a patient. Theoretically, that person has 100% odds of finding a donor. Let’s say that you are not in any of the bone marrow registry located around the world. That’s right…the patient has no chance of finding an appropriate donor.
So, in reality, the chances of finding an appropriate donor for a patient are as good as having that donor in the registry.
How can readers help?
There are many ways a person can help patients needing a BMT.
Join the registry – increase the odds of finding a donor for a patient in need of BMT. The push right now is to encourage the age group 18-35 years old and minorities to join.
Donate funds or help raise funds.
Donate cord blood.
Learn more on how you can help by checking out: Be The Match
After reading this I’m almost embarrassed at what I actually do with myself, but leave it to my Ate (that’s big sister to you non-Filipino speakers) to cheer me up, when she asks me – “Have you ever seen one of these kids when they watch a Harry Potter movie, how their faces light up? You do what you can do. Even if one person signs up for the registry, you done good.” Thanks , Ate Edna, for being who you are and doing what you do.
Again, I urge everyone to join the registry and consider being a future donor. To all the Asian Americans out there, especially the younger generations, let’s break through the reticence of being donors. The Japan registry, I hear, is one of the most prolific in the world so let’s follow their example.
And a big shout out to Offender Phil Chung, who I just learned was an actual donor in the past. Way to go, Phil!