Back in 2009 when my cousin Tami was diagnosed with a blood cancer called MDS I turned to the internet to try to help her. I don't recall who found whom but somehow Matthew Nguyen, who had Leukemia and lived in Los Angeles, and I connected online. We stayed in touch especially early on when he was still searching for a matching marrow/stem cell donor.
As I recall a match was found for him a few months later but that potential donor declined to donate to him. That meant he had to wait months longer, allowing his disease to progress, until a second match was found. This time the potential donor, Diep Dao, went ahead with the process and donated her stem cells to help save Matthew. But because she was (I think) an 8/10 match the odds against a complication free transplant (Is there such a thing?) would be lower than if a 10/10 or 9/10 match had been located and had been willing to donate.
Matthew and Diep meet.
Diep's donation cured Matthew's Leukemia.
It allowed Matt to marry his fiance Chloe.
It gave him two and a half more years to be with his family and friends.
But his recovery turned out to be a continuous struggle as his body was never able to be fully accepted by the transplant. His donor's cells didn't realize they had been moved from Diep's body into Matthew's so they attacked his tissue and caused a multitude of problems. It's called Graft vs. Host Disease when a marrow or stem cell transplant's donor cells attack the patient's body after the transplant. To a degree it's normal and to be expected. But for some patients the GVHD can do serious damage and can even be life threatening.
For Matthew it was a constant battle to try to beat back the GVHD. He persevered, fighting against chronic pain and discomfort first in his mouth, then his eyes, and later his skin. Matthew began suffering from scleroderma which means his skin became both thick and hard making it so that he could no longer bend his body or move freely. Still, he soldiered on, occasionally taking time to update his blog with status reports. Despite his suffering I can't recall ever feeling that he regretted having the transplant. He was never anything but grateful to Diep. She is an incredibly selfless person who not only donated to Matthew but a second patient as well.
With each post it became apparent his quality of life was diminishing but at the same time his positive attitude and gratitude, seemed to increase.
Matthew in 2009
For me, his suffering and death makes me both sad and angry. Sad because he was in a lot of pain and discomfort. And I'm angry, not at the universe but at the person who had been his first match and declined to donate which is probably unfair of me but it's how I feel. Even if they had donated perhaps things would have turned out the same. But if they were a closer match, and even if they weren't, receiving the transplant when his body would have been stronger would have been better. All patients have a better chance of survival the earlier after diagnosis they can receive a transplant.
So please, I'm begging you: Do not join the national marrow donor program to help the one patient you know. PLEASE HELP ANY PATIENT YOU ARE A MATCH FOR! Since 2009 I have befriended and read about patient after patient who were told there was a potential donor for them only to have that match, and sometimes even a second, decline to donate.
Here's the thing. You may join the donor program to help someone you care about. Yet the person who may ultimately end up being their match could be a complete stranger. Imagine you learn a match has been found only to later be told that person declined to donate. I can't help but imagine how that would feel because it's happened to so many patients. Now imagine your loved one's health deteriorating as they go through rounds of chemo and their body is put through treatments that take an additional toll on their health but it's the only way to stop the cancer or disease while the search continues for their marrow match.
Donating your stem cells to a patient in need is, imo, the ultimate pay it forward. You're potentially saving a life at very little risk and, thanks to modern technology, discomfort to yourself. I just can't imagine anything being more important than that.
To Matthew's family, his wife Chloe, and his friends I send my deepest condolences. I cannot begin to imagine the loss you all feel. Even though I never met Matt in person I will miss him as we had emailed early on and I'd continued visiting his blog looking for updates. I had a feeling things were not well when he hadn't followed up on his December blog post. I left a comment on his last post in February but he never published it so I realized that things had changed. The message I left then may even mean more now so I've shared it here on my blog as a goodbye and a thank you to Matt:
To join the Be The Match in honor of Matthew please CLICK HERE. And please, if you are contacted, donate. Changing your mind will be a blow to every person who loves them, and possibly a death sentence to a patient in need. That's not me trying to guilt you. It's just the reality of the situation for thousands of patients in need. And because bone marrow transplants are being used to treat more and more diseases the odds are someday someone you care about will be the one desperately searching. For some that's what it will take for them to truly understand what an incredible gift you can give if you are one of the people lucky enough to be a patient's match.
I joined the registry in 1995 and am still waiting for my phone to ring.