In memoriam: Emru Townsend

[jaderabbit]

Technology and animation journalist/editor Emru Townsend died last night. Although he was lucky enough to get a bone marrow transplant for his Monosomy 7--and his site HealEmru.com has doubtlessly helped many others to get the marrow they need--his transplant did not cure the disease.

I knew Emru only a little bit, completely through e-mail. From

Comments

[clair_de_lalune]

I'm sorry to hear about your acquaintance. Is he the same person you mentioned the other day as having gotten a bone marrow transplant, but not doing well?

[jaderabbit]

Thanks. Yes, that's the guy. Emru and his family worked hard to spread awareness and get more minority donors (he was of Afro-Caribbean ancestry), and they were very successful. They got a donor for him and who knows how many other people. But his bone marrow transplant didn't send him into remission. He was actually hoping for graft vs. host disease. It's so, so sad.

[clair_de_lalune]

--He was actually hoping for graft vs. host disease.--

Yeah...but he may be luckier that it didn't work out that way. I don't mean to sound insensitive - it's just that I've seen a lot of real misery with matched unrelated donor transplants and graft versus host disease. Maybe it's improved in the past 5-10 years, but I don't think, personally, I'd be willing to have one, even if it was certain death not to do so...

(I guess I should add that incompletely matched transplants are even worse, though.)

[jaderabbit]

I would not wish more pain on him. From what his sister said, it sounds like he had reconciled himself with life and death and was ready.

Yeah...my friend who needs a transplant has only a partial match right now. I really, really hope he gets an exact match.

[clair_de_lalune]

--From what his sister said, it sounds like he had reconciled himself with life and death and was ready.--

That's some comfort, at least.

[kino_kid]

Emru was never afraid to die. He said so for months. He was afraid of what would happen to those he left behind if he didn't make it. He really wanted to live.

He did have things he still wanted to do, but he had no regrets.

[kino_kid]

Easier said than done. Emru wanted this transplant so badly, that if no match was found he was ready to consider a haplo-transplant (incomplete match). It's much riskier, but it is a last resort. All transplants are.

Also, I know two people who have had haplo-transplants that actually went BETTER than Emru's so, yes, while the road is still difficult, there have been improvements in the last 5-10-20 years, maybe more than you realize.

I hope you are never in the position where you need to make such a choice, but if you still felt that you'd rather just die, that's your decision.

Graft vs Host Disease is something no one wants, but if you have acute myeloid leukemia that is incredibly resistant, and have a transplant, minimal GvHD might attack the last of any leukemic cells in the body.

[clair_de_lalune]

Of course, everyone has to decide for themselves whether the risks and benefits are worthwhile, so I wouldn't presume to counsel someone who had a good understanding of the risk to benefit ratio against having a certain type of bone marrow or peripheral blood stem cell transplant just because of my own feelings.* But, I am in a very good position to understand the risks and benefits, having spent several months on the BMT service during my hematology-oncology fellowship training 1999-2002. Where I did my training, matched unrelated donor transplants or 4/6 & 5/6 partial matches were the most common performed. My previous comment was based on my experiences with these patients, understanding that a graft versus leukemia effect is desirable to improve the chances of curing the cancer. My feeling was that the cure was worse than the disease; however, it's possible that the patients I saw were doing particularly badly because they were hospitalized and that there were many more patients in the outpatient setting who were doing well.

[clair_de_lalune]

In speaking of the outpatient setting I don't mean to imply that any of these transplants were performed in the clinic, but that I wouldn't have seen patients who had completed their transplants and were months-years out from their treatments, doing well, and following up in the clinic.