Jeremy Kong Needs You – Drive October 7, 2012, 1pm-4pm at Chinese Community Church of Greater Washington

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Jeremy Kong is a two-year-old Chinese-American superhero out of California. With Jeremy’s Acute Myelogenous Leukemia (AML) diagnosis in June 2012 and impending bone marrow transplant in the next several months, Jeremy’s parents, family, friends and community out in California (with help from the Asian American Donor Program) has been leading a very strong campaign to find him a bone marrow match. There is currently no available match in the registry.

Jeremy Needs You has created a social media page at the Jeremy Needs You Facebook Page, which is a steady stream of drive announcements, updates on Jeremy’s condition, and resources to become registered as a donor.

Jeremy Needs You has been successfully creating drives on the East Coast, and I’ve been in contact with Jeremy’s aunt Yvonne to attempt to get one started in the DC area. She will be flying out to DC on October 7, 2012 to run a drive at Chinese Community Church of Greater Washington in Silver Spring, Maryland.

Swab for Jeremy Kong

Location: Chinese Community Church of Greater Washington (web)
Address: 7716 Piney Branch Road, Silver Spring, MD 20910 (map)
Date/Time: Sunday, October 7, 2012 from 1pm – 4pm

Please help spread the word about this drive and help save Jeremy’s life!

Calling all HS/College students: DoSomething.org’s Give a Spit Campaign Launches

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DoSomething.org is an awesome organization that seeks to empower teenagers to actively participate in campaigns to create social change. They currently have several active campaigns listed across a variety of topics: voting, animal adoption, poverty, texting and driving, bullying, and more. They also offer a number of contests, scholarship opportunities, and resources to mobilize America’s youth. I wish I had known about a similar organization when I was in high school, as everyone I’ve been in contact from the organization has been responsive and extremely dedicated to their mission.

Today’s particularly awesome because it’s the launch of their Give a Spit campaign (fantastic name, BTW), which seeks to coordinate bone marrow drives on college campuses across the country. From the DoSomething.org staff:

DoSomething.org’s Give A Spit Campaign Is Back

This year, DoSomething.org’s Give A Spit About Cancer campaign is back, bigger, and better than last year. In partnership with Be the Match we will seek to mobilize college students to run bone marrow donor registration drives on their campuses. College students are the most in-demand donors on the registry. The 2012 program aims to launch drives on over 200 college campuses and sign up 15,000 new donors.

There’s a real need for registered bone marrow donors in the US. Why?

  • Leukemia kills more children every year than any other disease
  • Only 30% of patients in need of a bone marrow can find a match within their family. The other 70% rely on complete strangers.
  • 60% of patients never receive the donations they need

But we can Do Something about it.

  • Donors age 18-24 are in the highest demand. Donations are most successful when the donor falls within this age range
  • All it takes to sign up for the bone marrow donor registry, and potentially save a life, is a cheek swab

Young people need a concrete action they can take that doesn’t require donating money or fundraising. Give A Spit About Cancer is simple, free, and potentially life-saving.

  • College students lead local donor registration drives on their school campuses
  • DoSomething.org and Be the Match help the students organize their drives by shipping free of charge swab kits containing all of the materials needed to register 200+ new donors
  • Be the Match provides free-of-charge bone marrow typing for all participants

The campaign runs from September 24 – November 15, 2012, and results from the different college campuses will be announced officially in December. Drive participants are eligible for prizes which will be announced soon!

To get involved,

#170in7, A Bone Marrow Cyberdrive in Loving Memory of Janet Liang

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From this post at http://reappropriate.co:

Janet made it her mission to register Asian American bone marrow donors, and thanks in part to her efforts, at least 18 bone marrow matches were made to recipients nationwide. However, last week, Janet passed away without finding a perfect match for herself. Today, many other Asian American leukemia patients are still waiting to find their perfect match, like 2-year-old Jeremy who was recently diagnosed with leukemia. To celebrate Janet’s life and her legacy, we want to register 170 new potential bone marrow donors in Janet’s name in just 7 days.

Janet Liang passed away last week.

I’ve put off posting my thoughts on her passing until now because I wasn’t sure what my thoughts were. But with this new cyber initiative adopted by several leaders in the Asian American online community to register donors this week in Janet’s honor, I think it’s an appropriate time to share about Janet’s impact on my life and on Cheekswab.

I didn’t personally know Janet, but our paths crossed a little. I heard her voice on a White House conference call and she heard mine. I sent her a message on Facebook that understandably never got a response. I commented from time to time on her Facebook status updates. She liked Cheekswab on her Facebook account.

For someone I’ve never met, Janet had a very strong impact on significant aspects of my life. The launch of Janet’s viral video on reddit coincided with the launch of Cheekswab, and I received emails from people wanting to donate because of Janet’s plea. I ran two drives in Janet’s honor earlier this year, as people who saw her video became convicted to give part of themselves in hopes of saving her.

She struck a chord in the consciousness of thousands of people across the Internet. She advocated for a cause more personally and successfully than anyone who came before her. Team Janet registered over 10,000+ new donors from high-need ethnic groups in this year alone. She will save hundreds, potentially thousands of lives through those registrations.

She just couldn’t save her own.

When I speak at drives, I use the line that “Janet is you, Janet is me, Janet is your best friend, daughter, child, parent, spouse.” But Janet was literally me. She was a 25 year old Asian American leukemia patient. She wanted to positively impact the world by being a teacher. She was deep and reflective and eloquent, per her blog. She was confused and angry but ultimately optimistic.

I will remember you, Janet Liang. I will remember you because you are me. You are Andrew. You are those sitting in the beds right now, not believing what they’re going through. You are those sitting in the waiting rooms, hoping for a miracle.

The world shines a little less bright today. But Heaven rejoices.

Rest in peace, friend.

Cured

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August 20, 2012: My Final Oncologist Appointment

Five and a half years ago I was diagnosed with cancer. Acute myelogenous leukemia (AML), to be exact. I went from being a stressed-out-of-my-mind junior year engineering student to a quietly terrified but strangely placid 20 year old cancer patient. It was, and in some aspects somewhat continues to be, surreal.

For the last five years I’ve lived under the fear of relapse, a word which I would go out of my way to avoid using in conversation, even in unrelated contexts. Within the first year out from chemotherapy, the chance of relapse is highest; making it to the second year without incident is a significant milestone. Each subsequent year up until five years is an additional milestone, with the odds of relapse decreasing substantially each year. After the fifth post-chemotherapy year, if your body tests with normal blood levels then you are medically “cured.” For all intents and purposes, the medical likelihood of relapse is effectively zero.

Six months ago we set the five year appointment date for August. On Monday I went to my oncologists office for the last time.

I am cured.

I’m not a very outwardly emotional guy, but I was overwhelmed as I left the oncologists office that afternoon. Down the same steps I’ve walked hundreds of times, often with a face-mask on as to prevent infection in a post-chemotherapy neutropenic state. Into the same garage I parked in every day during the early months of 2007 in order to get my blood counts checked.

Through treatment and interacting with various people via this site, I know how fortunate I am to be able to see today. The last five+ years have been a long, life-altering road, full of experiences and life lessons I didn’t expect to encounter until much later. But despite the anguish, struggle, and negatives of being sick and having cancer, it’s absolutely changed my life in positive ways. It’s taught me to appreciate the moment, to count my blessing everyday, and that there are reasons to keep going when the world appears to crumble down around you.

I’m so thankful for the support of so many people throughout my sickness. I owe so much to the love and support of my mom, my sister and her husband, my family, my girlfriend, my friends, and my church. I owe so much to the diligence and knowledge of my doctors both from U-Penn Hospital and Virginia Cancer Specialists (Dr. Dipti Patel-Donnelly is wonderful) and the number of awesomely patient and supportive nurses I had throughout my hospital/outpatient stays.

I know that many encounter this site at various stages of someone’s cancer diagnosis. And I know they already know that in life there’s never any assurance of a happy ending. But I do want to say that if you’re fighting, keep fighting. If you’re encouraging someone else to fight, keep encouraging. If you’re getting tired, keep going. Cancer is a disease beaten one day a time. If you get past one day soon you’ll get past a week. Followed by two weeks, then a month. Then a year, two, and three years. Five, ten, fifteen years. And one day your doctor won’t need to see you anymore and cancer will become a distant memory.

But you only get there one day a time. Keep pressing on.

Rest in Peace, Andrew Park

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I’ve put off writing this post for several days now. I didn’t really know what to say. Andrew’s passing has made me think and feel a lot of things that I wasn’t sure how to best articulate.

First, I’ll link to Andrew’s father’s blog: Andrew’s Fight, One Step at a Time. The last several posts dedicated to his son are particularly beautiful, although the theme of selfless and unending love for Andrew permeates all the words throughout the entire blog. As a warning, the most recent posts leading up to Andrew’s passing are very emotional.

I’ve never met Andrew or his father Joe. I was introduced to Andrew’s need for a bone marrow donor through a bone marrow drive I helped at in February, held at the VA church of Andrew’s Aunt Pam. The drive was massively successful, with 254 registered donors in a single day. To date it’s still the biggest drive I’ve ever personally been involved with.

After the drive finished, Andrew’s father Joe emailed me to express his gratitude for publicizing his son’s fight on this website. It was a gracious and unnecessary gesture from someone who was going through a lot of very chaotic events that demanded much more attention than writing me an email.

After I was diagnosed, in a particularly emotional moment my mom mentioned to me that the biggest fear of any parent is to experience the death of a child. That if she could, she would absolutely have traded places with me in a heartbeat. That for some reason, my sickness consumed her with guilt. Guilt that she couldn’t make things better, guilt that she couldn’t take my place, and guilt that she would go to the end of the world if it’d make me better but things weren’t in her control. Medicine and God were in control of my fate. It was difficult for her to come to terms with that reality.

Joe has been incredibly courageous in blogging so transparently and diligently in the midst of such an emotionally draining time period. I know what that’s like; to sit down at a computer for hours, writing about something extremely personal that you don’t want to relive. It’s nobody’s business, and you’re tired and well within your rights to forego the post entirely, but you sit down and do it anyway. You do it because maybe, someday this post will help somebody. You do it because there are so many other people out there who are wondering how things are going but can’t physically be there. So you bare your soul and deepest fears to these people and potentially thousands of strangers who happen to stumble across your blog, in faith that your words will be used in a positive manner that you cannot foresee. Blogging like Joe did was absolutely an act of selflessness and an outpouring of the love he has for Andrew.

Joe’s blog and Andrew’s memory is why it’s so important to continue to spread the word about bone marrow donors. Everyone who has read Joe’s blog now knows what it’s actually like for families undergoing treatment — the fear, the hope, the moments of despair and the moments of triumph. It’s easy to understand the kind of hope that a medical breakthrough/bone marrow match can provide not only a patient but all the loved ones connected to that patient. Although Andrew’s transplant was not successful, it was only through the altruism of a random, willing donor that the hope of a cure existed for Andrew.

Rest in peace, Andrew Park. I know you’re enjoying your new, healthy body now, and doing everything that your health limited you from here. And I know you can now see how much your father, mother, siblings, family members and community love you.

To the Park family: God bless you and keep you, especially during this difficult time. Thank you for your willingness to share your lives with us all. The drives you’ve conducted and people you’ve convinced to join the registry in hopes of finding Andrew a bone marrow match will go forth to save countless others that you’ll never meet. That is a part of your and Andrew’s legacy that I hope you never forget.

The Park family is open to receiving financial assistance, as I’m sure they are facing a lot of expenses, medically and otherwise. To give you a frame of reference, my first two inductive rounds of chemotherapy (out of six rounds total) cost my health insurance company $500,000. If you’d like to send them a financial donation, please send it to:

Joe Park
PO Box 335
Hinsdale, IL 60522