Help Vinay & Sameer

The same day we found out that those blasted blasts were back, we also learned something quite encouraging: A potential donor just entered the registry and looks like a possible match for me!

For full effect, I have to share the context in which I learned about this development. My search coordinator at the Hutch called me very guarded and suspicious and said, “Someone possibly matching you on at least 9 of 10 antigens just appeared in the registry yesterday. Do you want to tell me what’s going on here?”

She suspected that I must have had something to do with this last-minute development! Was this one of the family members typed through our efforts on my father’s side of the family (from where I have inherited an unusual allele which has proved almost impossible to match)? But after I’d answered a bunch of questions - to prevent donor coercion she isn’t allowed to share any information - she concluded that this was truly an anonymous donor who might be my unlikely match!

So what does this all mean? For starters, it means that all of you CRAZY people out there who probably did have have something to do with this are to blame! You’ve been pushing hard to register donors may have found me a match! You guys are all nuts, and I have to thank Robert, who convinced me to go public with my case to drive registrations; Priti and all of Team Vinay for their groundbreaking efforts; and Melindah and all of the countless volunteers in Seattle, New Jersey, California, and all over the country who have been organizing drives and building awareness for this cause. There are literally hundreds of you, some who don’t even know me or Vinay, but we know who you are. As Reena loves to say, you guys ROCK! Two new desi patients have already found matches from your efforts in registering 23,000 South Asians. Can you imagine how many more lives could be saved if we could get 50,000 donors registered?!

But let me catch my breath. This potential match is not yet confirmed; more typing and information is needed still. And, as per my earlier post, our community has a horrible track record in stepping up when called upon to donate stem cells. Even though it’s almost as easy as a blood draw, only 30-40% of us are willing to do that to save a life. I am hoping that this is changing with our generation and our campaign.

Even if this match doesn’t come through, I am blessed to live in a time where a new source of stem cells has become available: umbilical cord blood stem cells. For those of you mothers out there - do you remember how you were given an opportunity to bank your cord blood for a fee? Well, I hate to say that most of you were probably not even told that you could have donated that cord blood to potentially save a life! It’s another one of the tragedies we’re uncovering as we go through this process - new mothers are not told that their cord blood could be just as valuable to a patient in need as bone marrow from a donor.

That cord blood contains very naive stem cells, albeit not very many of them. Since they are naive, they are much easier to match (and you don’t have to deal with a donor who may or may not step up when called upon). One cord unit is not useful for adult recipients given the low volume of stem cells, but researchers have begun refining techniques taking two different cord blood units and transplanting them simultaneously. The result with two cords? Basically the same as a bone marrow stem cell transplant! Engraftment, chimerism, and long-term cure in the majority of cases!

Amazingly, this option was not available anywhere for adults until about 5 years ago; even then, the results were very uncertain. The Hutch has been conducting dual-cord blood transplants for only 1 1/2 years now (isn’t that amazing - 18 months ago, I potentially would have had zero options….let that sink in for a minute). Although the data are still limited, science seems to suggest that cord blood stem cell transplants may be the transplant norm of the future. So tell all expecting mothers - especially ethnic minorities - to insist on donating their cord blood if they don’t want to bank it for themselves! The docs may not tell you about this option, but it doesn’t cost you anything to do and you just might be saving a life.

And to my bone marrow match, if you’re out there, I hope you are free from negative family pressures and that you also joined the registry voluntarily and with the intention of being a hero. This might be the chance both you and I have been waiting for!