Timothy Song

From Alice Song’s blog:

It is confirmed. 9/10 match. Not perfect, but may be good enough. I am trusting God this is His leading and guidance. We need to meet with the BMT department. I have a LOT of questions and concerns that I want to ask and bring up. This also means, we are going to try to fly out to Children’s Hospital of Texas to get a 2nd consult on the transplant. It’s unbelievable, at the same time what it’s suppose to be. My mind is racing with things I need to do, people I need to email, logistics of possibly relocating to the fears of transplant risks.

Thank you for your prayers. I have been encouraged beyond words from people close and far, even from people I have never met. THANK YOU. Your prayers have been my strength when doubts cloud over me. Please continue to do so as we make many life-changing decisions for our family.

Please continue to spread the word about bone marrow registry. This prospect of hope can be given to another family…

Lastly, would you lift up a prayer for Timothy’s health today? He had a fever today. He hasn’t had a fever in a long time, since April. I am hoping it’s just viral and will go away soon. He was pretty cranky today :(. Anytime he has a fever, it’s nerve-wracking for Daniel and myself.

First Official BeTheMatch Drive

Greater Little Zion Baptist Church

I just got back from the first official drive I’ve participated in as a level two volunteer with the National Marrow Donor Program.  The other NMDP volunteer and I manned a table at a health fair at Greater Little Zion Baptist Church in Fairfax, VA.

I was eager to get this drive started because while I did participate in the drive at my church last Sunday, I’ve yet to observe/participate in an “official” NMDP/BeTheMatch drive.   The NMDP really is an incredible organization.  They perform 99% of the legwork when it comes to registering donors: they provide all the materials, all the training, all the coordination, and all the processing.  They just lack that extra 1% of in-the-flesh volunteers to oversee the filling out of forms and swabbing process.  After a drive we make sure the forms are filled out properly, go to Fedex, and the NMDP already has the postage paid for returning completed registrations.

The health fair at Greater Little Zion was awesome.  It’s such a great service to not only their congregants but the community at large.  There were tables for blood pressure screenings, diabetes screenings, breast/cervical cancer awareness, free health checkups, Fairfax County public resources information, environmental awareness, financial counseling, psychological counseling… the list goes on.  The people were incredibly nice, curious, and willing to help in whatever way they could.

We registered three donors today, which at first glance looks small but I’m extremely pleased with.  Every new person represents a chance at life; the numbers game isn’t what’s important.  It was also partly due to Greater Little Zion’s involvement with causes like bone marrow registration in the past, as we actually had a lot of people tell us they were already on the registry.  It really is a testament to the social awareness of the church and their willingness to engage people beyond their walls.

Continue reading “First Official BeTheMatch Drive”

35 Donors!

Sunday was awesome.

Working with Grace (the main organizer of the drive), we were able to register 35 new donors to the bone marrow registry. With a congregation of about 100, I think 35 was a fantastic and surprisingly large response. When Grace mentioned to her contact at A3M that we had roughly 100 congregants, he told her that a response of 10 or less was a realistic number. To see so many people walk up to the front of the room immediately after service ended was really amazing. The generosity and willingness of people to help others while expecting nothing in return is a humbling and restorative experience.

I had the opportunity to speak briefly on Sunday for about 8 minutes. It was difficult for me to prepare exactly what I wanted to say during the week beforehand, but by the time Sunday came around I felt like the words and points were right. My “strategy,” if you want to call it that, isn’t very complicated. I think if you’re able to present the numbers and facts in a clear way, they speak for themselves. But cancer begins to lose its meaning when you boil it down to focus solely on statistics and numbers. There’s a deeper identity to health, loss, love and family that cancer creates and that’s what I want to help people understand in whatever amount of time I have to speak. It’s something that I think everyone is able to understand, because it’s not an exclusively “cancer” thing. It’s a humanity thing. Anyone who has loved or lost in any capacity (and we all have) can understand. And regardless of your medical history, I think those experiences bind us all together. At the core we’re more alike than we think we are, which is why when we’re honest with ourselves, we want to be there for each other.

For some other exciting news, Timothy Song may have a match on the registry! Awesome, awesome, awesome. Alice Song is an amazing woman. Not only is she going through such great lengths to save her child, but her efforts will go a long way towards saving the lives of others long into the future. Despite the darkness surrounding her son’s sickness, she’s still able to bring light into the world that far outreaches her present circumstances. Deciding to do good in the face of struggle — there’s no better testament to the determination of the human spirit than that.

4 Months Later

It’s been a long time since I’ve written here.

While it’s hard for me to remember exactly what’s gone on in the past four months, I’ll sum up the major points as they come to mind:

  1. I’ve had more conversations and emails with Juliette Williams from the NMDP, received a background check and completed the online training courses for both Level 1 and Level 2 Volunteers. I am now a Level 2 Volunteer/Ambassador for the National Marrow Donor Program, which means I can coordinate and run drives on my own.
  2. So while I can coordinate and run drives on my own, I’ve still yet to see one in person. The training was thorough, but I have a feeling it won’t really compare to the real deal. I need to make it out to a real drive sooner rather than later. I have a lot of questions as to how to scale a drive and optimize it to accomodate a large number of people.
  3. The training (an online tutorial) was honestly kind of intimidating. I didn’t know there were so many steps and volunteers needed to coordinate a drive. I was genuinely surprised as to how involved a process it is, from marketing/awareness, processing kits, confidentiality concerns and fundraising.
  4. When I take the time to reflect, I feel enormously guilty for not doing more with my time with regards to this initiative. I can generate legitimate-sounding excuses to appease others (work was busy, life was busy, etc.) but they don’t appease myself. If I really wanted it, I’d work harder at it. That’s the bottom line. And I do really want it. I’m not sure what gives.

I don’t know what it is that I’ve been waiting for. I have the time and the resources to move forward. What am I looking for? The seas to part, a burning bush, a vision in a dream? Grandiose has never really been my style. A generic church newsletter, perhaps?

Two weeks ago I was skimming my home church’s e-newsletter and saw the words “Bone Marrow Drive” appear as a header. Here’s the text included in that newsletter:

Continue reading “4 Months Later”