A Message From Lori…
For those of you that don’t know, Lori Nam is a part of the Hero family and creator of Swab and Save Someone (SASS), an amazing initiative in partnership with There Goes My Hero in search of compatible bone marrow donors for Lori and thousands of other patients awaiting transplants.
In September of 2009, Lori was diagnosed with stage 4 non-Hodgkin’s lymphoma. She received 33 rounds of aggressive chemotherapy and countless other therapies and surgeries. Despite these treatments, her cancer returned multiple times. Each time the disease returned more quickly and aggressively. In 2014, Lori’s doctors told her that she would need a bone marrow transplant to survive.
She spent months looking for a matching donor, but unfortunately was not able to because of her Korean ancestry. Instead, she received a double umbilical cord transplant on May 19, 2015 and her cancer returned a year later.
Recently, Lori announced that she is currently battling cancer for the 4th time. Lori is searching for a donor match again for a second bone marrow transplant in hopes to cure her cancer, like thousands of other patients currently waiting for a life-saver.
Please take the time to read Lori’s announcement and encourage someone you know to join the registry.
If you are interested in setting up a drive to help find Lori’s match, please send an email to email@example.com
“Back in May 2016, I posted an update after celebrating my one year post-transplant birthday at the Night of Heroes fundraising event with There Goes My Hero, DKMS US (Delete Blood Cancer) and dozens of other organizations supporting our cause. I mentioned that my 2015 transplant had failed, but that my cancer was well controlled. Unfortunately, a week later, my one year post-transplant scans showed I had relapsed again. In fact, I had stage 4 cancer, with evidence that the cancer had spread to my bones. That explained the chronic lung infections, overwhelming fatigue, severe anemia and breathing difficulties for the previous 6 months. I was forced back into survival mode and relaunching SASS took a backseat to dealing with cancer and facing more treatments.
To say that the last 4-5 months following this news has been difficult and daunting for Jon & I would be a gross understatement. After so many years, 7 to be exact, survivability becomes a blur with little to no distinction between reality and all the distractions and delusions that help us get through the motions of the day. Most days, the pain seems unimaginable, unthinkable and impossible. For so long, I have been standing at the crossroads of despair and my greatest fears; existing in limbo in that space between living and dying.
I am facing my 4th battle with this disease and with each relapse, my chances of survival diminishes significantly. Cancer has destroyed my body and sense of well-being, time and time again. To date, I have endured a total of 33 rounds of intensive chemotherapy, countless surgeries, radiation therapy and a double umbilical cord bone marrow transplant. My cancer no longer responds to conventional chemotherapy, so I am currently on alternative therapy to keep the cancer at bay while I wait for my match to step up and save my life. Every available treatment is a “temporary fix” and my only chance for a cure is a bone marrow transplant. Because I am Korean American, it is especially hard fr me to find my match. A marrow donation requires a similar genetic pool, so the closer the ethnic makeup, the greater the chances of a match. It’s often difficult for Asian patients to find their donor match because ethnic minorities or ethnically diverse groups are largely underrepresented in the bone marrow database. Only 7% of the entire US registry consists of Asians and a much smaller percentage are of Korean descent. I am only one of 14,000 patients waiting for this life saving treatment. We simply need MORE PEOPLE in the registry.
Why not start with family members first? We did. Each family member was individually tested and eliminated as potential donors. My mother was my last hope and last month, we learned that after a series of extensive tests, she was deemed ineligible to donate her stem cells to me. I cannot fathom what it is like to be a parent of a dying child, but I imagine it must be one of the worst pains that exists. My heart breaks for my parents and all those who are affected so deeply by my illness.
With chronic blood cancer, there is no hope without others stepping up and making the selfless decision to save another life. I survived thus far because the fire inside me burned brighter than the fire around me. But there comes a point when I cannot fight this alone. I need YOUR HELP and I need it NOW. SASS, in partnership with There Goes My Hero and DKMS is launching a campaign in my honor and we are all working hard to increase numbers in the registry. We need heroes to swab and join, we need volunteers, we need people to host drives and spread the word about the dire need for more healthy individuals to join the registry. Most people don’t even understand what a simple swab of the cheek could mean for a sick cancer patient. It takes ONE swab, ONE match, ONE hero to save someone’s life. I can’t think of anything more rewarding.
There is something to be said about the power of vulnerability and how it can connect humans on a much deeper level. I share my story not because it’s easy or interesting, but to shed light on this need and act as the voice for so many others in my situation. I would rather do something than nothing. Turning pain into purpose is not a novel concept. But using this platform to move people to action, create change and save lives is a unique opportunity and a true gift. It is a call to action, derived from my deepest despair. There is no greater purpose and no better way to heal from grief than to make palpable and real changes for myself and others fighting for their lives.
This is a photo taken last weekend at the wedding of one of our dearest friends, Tiffany Klinger & Matt Klinger. For a cancer patient, life comes one to two months at a time and you never know what is just around the corner. It makes planning for any event extremely difficult. I cannot express what it meant for me to be able to attend their wedding, celebrate this occasion and more importantly, what a blessing it has been to be a part of each others lives. Nothing has been more important to me than sharing these intangible moments and cherishing this time with those I love so dearly in my life. At the end of the day, the only thing that truly matters is the giving and receiving of this love- something I do not take for granted.
I hope to have the opportunity to create many more memories and I certainly hope this is my very last round with the big C. My own illness has ignited a spark within my heart where hope lives. To all those who are involved in SASS campaign or any other group(s) supporting our cause, THANK YOU FOR WHAT YOU HAVE DONE, AND FOR WHAT YOU ARE ABOUT TO DO.”
If you, or any group, would like to get more information on hosting a bone marrow registry drive, would like to order a kit online to get registered and potentially save a life, volunteer at an event, or donate any amount of money to SASS so that we can continue doing our work to diversify the registry, you can contact us on FB or email us here: